2008

WEDNESDAY, DECEMBER 31, 2008 06:03 PM, PST

Well, we got the xray. But we couldn't get it at Great Basin Imaging~~~as of 2 weeks ago they no longer take our insurance. So the drama continues. We had to go to Carson-Tahoe hospital and have the xray done. We felt better about GBI doing it, they did David's very first MRI and xray. We trusted them more to get the xray to Dr. Hastings~~oh well. It is out of our hands. There is nothing we can do now but wait. We looked at the bone scan when we got home (didn't expect a problem, so didn't really look at it yesterday) and we can see the spot they are looking at. We can also see it on the xray. It is a spot that is making the bone 'stick out' abnormally. We don't know what it is, but hopefully they will tell us soon. Please pray for David, he is understandably scared. Thank you for your prayers.

Well, I will let you know what we find out. Please, please pray for all of us. We just don't know how much more we are supposed to take. Thanks for checking in on David. God bless you. We love you.

Kristi and the Koury Klan

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WEDNESDAY, DECEMBER 31, 2008 12:27 PM, CST

Pray, pray, pray!! I just heard from Connie~~~CT looks good. However, the bone scan doesn't. There are two spots; one is his left knee, but they are attributing that to weight-bearing and 'over use' of the left leg. The spot of concern is his left foot at the base of his big toe. We are going to be leaving soon to go to Great Basin Imaging for an xray of his left foot. Hopefully we will hear on Friday the results of that. Ok, so 2009 isn't starting out too good!! We have to get through tomorrow not knowing anything. Please pray that the spot is not osteo. Thank you for your prayers. God bless you. We love you.

Kristi and the Koury Klan

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WEDNESDAY, DECEMBER 31, 2008 09:04 AM, PST

Good morning. I am sorry I didn't update yesterday, it was another one of 'those' days. David woke up in pain yesterday, and very nauseous. We went to the hospital at 9:35 (we were a little late), but we didn't have to register on the 1st floor like originally told. So we went straight up to the 2nd floor to the lab to have David's blood drawn. He doesn't have the broviac anymore, so they had to draw from his arm. He said it wasn't as bad as he thought it would be. They are checking for the 'normal' stuff, plus his vitamin B12 levels. While we were waiting for them to draw his blood, Bryon went and registered him for his CT and bone scan. After his blood was drawn Christine, in nuclear medicine, injected the contrast into him (for the bone scan). He had to have another 'poke', poor kid. Then we went straight to the CT scan. Then we went up to the 5th floor to visit, and we saw Autumn! Hi, again, Autumn! It was great to see her. We miss some of the people at Children's, but we do NOT miss being there!! Hey, Autumn, could you please tell Chuck 'hi' for us? Thanks. Anyway, David was in pain and feeling very nauseous the whole time. I forgot to bring zofran with me~~~bad mom! We saw Connie, and she said no PT this week. Let David lay low and recover from this surgery. Yes, Vicki, it is an operation to lengthen his leg. I know some kids, Mattie included, have the kind of prosthetic that is lengthened by magnets; not Davids. It is surgery with an incision and general anesthetic to lengthen his leg. Anyway, so we then went down to the cafeteria and David laid on one of the benches for awhile. He didn't eat because he was nauseous; I am giving him the percoset every 4 hours on his empty stomach; which makes him nauseous; so he won't eat; but he needs the pain meds; etc. I can't tell you how sick and tired we are of watching our baby suffer!!! We have been watching him be in pain and suffer for almost 16 months now!! Enough! But what do we do? We just keep on going, day after day after day after day........Sorry. Anyway, then, at 12:30, David had the bone scan. Please pray! I will not 'bleed until I am shot,' but they had to take extra photos of his ribs because there is some concern there. One of the spots of concern is his broken rib from the right thoracotomy; not sure about the other spots of concern. So please continue to pray that the scans come back clear. I am going to call Connie today and see when we will know the results. Scanxiety sucks! Ok, then we left the hospital, had to repack the car, and then get some food. Of course, not everybody could agree on where to eat (I hate fast food anyway), so we went to 4 different places. David wanted Taco Bell (then didn't eat it); Rachel wanted Jack-in-the-Box (major yuck); Jennifer wanted Subway; and Bryon and I went to Mr. Pickles. So by the time we got home, it was 8:30. I was too tired to update. So that is the story of yesterday. By the way, we still have snow! I was afraid it would all be gone by the time we got home~~~but nope! And it is supposed to snow on Friday! Woo-Hoo! But we are sooooo glad to be home!!

Well, I need to go get David's medicine ready. You all have a good day. Please continue to pray for David. Thank you for checking in on David. God bless you. We love you.

Kristi and the Koury Klan

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MONDAY, DECEMBER 29, 2008 08:40 PM, PST

Good evening. I am so sorry it has taken me so long to update. The doctor came and talked to us about 10:45 and said that David was in the recovery room (PACU) resting comfortably. Then they came and said one of us could to back, so I went back about 11:00am. He was still asleep. He finally woke up around 12 or so; in a lot of pain. They gave him some fentanyl before he came out of surgery, but he still woke up in pain. They said he did have a breathing tube~~~for about 45 minutes. Anyway, they gave him some more pain meds in his IV, and he kinda went in and out of consciousness for quite a while. We were told he was okayed to stay the night, but he didn't want to. I told him that if he wanted to go home he needed to wake up and stay awake. So he finally woke up and we left around 1:30. They gave him a percoset before we left. Then we went to Walgreens and filled the prescription for more percoset. Moving him was pretty painful for him. I am giving him the percoset every 4 hours, so we have been able to stay ahead of the worst of the pain. His knee is wrapped; and has to stay wrapped for 4 days. He has an appointment with Dr. O on January 8th to get the staples out. The thing I am the most worried about is that his knee is bent again. Hopefully it will straighten again soon. He has PT on Wednesday, please pray his pain is better. Right now I guess it is manageable; but that is about it. He woke up in the PACU in pain, tired, and grumpy. Poor kid. I am so tired of watching them take my child away, and allowing someone to cause pain to him. That is very hard as a parent! My job is to protect my children, and I can't protect him from pain and cancer! Only someone who has a child with cancer can totally understand what I mean by that. But, anyway, Dr. O said the surgery went well. He said the spot to crank was easy to find, and he is lengthened a good centimeter. David's pain is in his knee, by the way. The pain is not in the muscle where the 'stretching' is being done. We will be back in 6 months to do it all over again! Grrrr! After we left we spent over 2 1/2 hours getting back to the hotel~~a 20 minute trip!! I know I have said it before~~~we hate San Francisco!! Actually, we hate California and the traffic! Yes, we live in podunkville! I like the slow pace of Carson City. So right now David is playing Game Boy and doing ok; but he is still in a bit of pain. Please pray that he feels better tomorrow. Having his scans with him in pain is really going to suck. Plus, we didn't think to bring his crutches! We brought his wheelchair, so that will have to do. He can put weight on his leg, but he is afraid to right now. The directions say 'as tolerated,' so we will see when he is ready to put weight on it. We are keeping his leg elevated, so hopefully that will help. The incision on his knee we haven't seen yet, but I think it is about 2" long. I will let you know when I see it. He can't get it wet, so that is a bummer. I wanted him to be able to go swimming in the hotel pool~~~~~maybe some other time.

Well, that is about it. Please continue to pray that his pain goes away, and he heals fast. Thank you for your prayers today. Please pray that the scans tomorrow go smoothly for him. Please pray that the bone scan doesn't cause pain for him. And, most of all, please pray that the scans are clear. I don't know how much we can take of seeing him in pain. We do NOT want to have to put him through another thoracotomy!! Anyway, gotta go. Thanks again and again for your prayers. Thank you for checking up on David. God bless you all. We love you. ((HUGS))

Kristi and the Koury Klan

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MONDAY, DECEMBER 29, 2008 09:57 AM, PST

Good morning. David is in surgery right now. They took him in about 9:10, and I will let you know what time he gets out, and what they say. The doctor did tell us that he does the lengthenings every 6 months~~~too often can cause stiffness in the knee, and other problems. He can only do 1 centimeter at a time, and David is, best we can figure right now, about 4 centimeters shorter in his right leg. So, providing he doesn't do any more growing, he will have a couple years of these surgeries! UGH! I am really tired of watching my baby be wheeled into surgery! *sigh* Keep up the prayers.

I will post again when I know more. Thank you for your prayers and for checking in on David. God bless you. We love you.

Kristi and the Koury Klan

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SATURDAY, DECEMBER 27, 2008 11:11 PM, PST

Good evening. It is still beautiful and white here in Carson City, Nevada!! We are still really enjoying this wonderful snow. We have to leave it tomorrow morning, though. And by the time we get back, it might be all gone. *sigh* I guess this is just the beginning of winter, so we will get more, I am sure.

Today was a pretty good day. We celebrated Jennifer's birthday together, since only the 5 of us will be together tomorrow. But we had fun today.

Please pray for our safety tomorrow as we drive to San Francisco. Then please remember to pray for David on Monday morning when he has the surgery. He is so tired of surgeries~~~who can blame him?!?! Some people are under the impression that this is a surgery done under local anesthetic. Well, it isn't. David will be put to sleep for this surgery. That is one thing he is really tired of. I am tired of the general anesthetic and all the risks that go with it. This is supposed to be a short surgery; they told us that the operating room is reserved for one and a half hours for the surgery. I will post as soon as I know anything; or as soon as I can. Please pray beginning at 9am for him. Thank you. Then on Tuesday we will have the bone and CT scans. We have to register at 9:30am; don't know exactly what time everything will take place. I know that the contrast that they inject into him takes about 2 hours to work. So he will have the CT scan while he is waiting for the contrast to work, then he will have the bone scan. Please continue to pray that the scans come back clear. We are pretty nervous about these scans~~~he has been off chemo for 3 months; plenty of time for the cancer to have spread! We really covet your prayers. Thank you so much.

Well, I need to finish the laundry and packing~~~yes, it is late! Thank you for checking in on David, and thank you for your prayers. God bless you. We love you.

Kristi and the Koury Klan

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FRIDAY, DECEMBER 26, 2008 08:42 PM, PST

Good evening, everyone. I hope you all had a wonderful Christmas. We had a good day. It snowed!! We had 3", and it was wonderful. That was David's Christmas present from God; he really wanted a white Christmas, and he got one. We were thanking God all day for the snow. And it was so wonderful to be home this year, and all be together. Jeremy and Lucy spent the night Christmas Eve, so we were all together from the time we woke up! Silly David set his alarm to wake him up at 5:55! I told him he is more than welcome to just sleep until he woke up naturally......yeah, right! He would have none of that! So we were all up and downstairs by 6:30. We had a rather small Christmas, so it only took us about an hour for all 7 of us to open all our gifts. There have been years in the past that it took us 3-4 hours! But it was a nice Christmas. Instead of focusing on the material aspect of the day, we focused on Jesus' birth and the fact that we were all together and David is doing ok. That made it a great day. Then I made the traditional breakfast burritos, coffee, orange juice, and hot chocolate for breakfast. Then we just fellowshipped and enjoyed being together until the turkey dinner was ready. It really was a wonderful day.

Today we got some more firewood; thanks CVC and Alan for the delivery! It is still very cold, and still wonderfully white outside. I love the icicles hanging from our eaves. We are cozy warm in the house, and thoroughly enjoying the snow. Thank you, Jesus, for the beautiful blanket of white covering our home and yard.

David had physical therapy today. Bryon got to go, too, to see how David does. He got to see how hard David works at getting better. David did very well today. It isn't easy, but he doesn't complain. He still has his 'crunchy' knee, and Linda was trying to manipulate the knee cap to break up the scar tissue causing the noise. Well, it was causing David too much pain, so she stopped. Besides, David likes freaking people out with the weird sound his knee makes. But Linda doesn't want the scar tissue to get so bad that the knee cap adheres to the artificial knee. We will see what happens as time goes on.

We will be leaving Sunday to go to San Francisco. Bryon would like to leave by 9am. We know that the traffic will be horrible; all the holiday travelers going home. Sunday is our daughter Jennifer's birthday, so we will celebrate it tomorrow night. Jeremy and Lucy aren't going with us to S.F., so we want to celebrate Jennifer's birthday before we leave when all 7 of us can celebrate. That is perfectly fine with Jennifer!! We wish Jeremy and Lucy could go with us, but they can't afford it. Plus, Lucy has her post-op doctor appointment on Monday afternoon. So, we will miss them. Please pray that we have a safe trip. Thanks.

Ok, we are really feeling the scanxiety! I try not to think about the "what if's" and just trust God for the outcome of David's scans. It is so easy to say that God is in control (and of course He is), but it is really hard to remember when your baby is looking at his cancer coming back! Please pray that David's scans come back clean and clear. I am not as concerned about the bone scan as I am about the CT scan. If the cancer came back in his bones, we would know it; he would have pain. But not so with the lungs. We never knew he had the 10 lesions in his lungs! So that is why I am more concerned about the CT scan. We can't tell you how much we appreciate your prayers. They mean a lot to us.

Well, I gotta go. I need to get David's medicine ready. You all have a good evening. I pray that you all have a great 2009! Thank you again for all your prayers. Thank you for checking in on David and the Koury Klan. God bless you all. We love you. ((HUGS))

Kristi and the Koury Klan

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WEDNESDAY, DECEMBER 24, 2008 09:08 PM, PST

MERRY CHRISTMAS! GOD BLESS YOU ALL. WE LOVE YOU.

Kristi and the Koury Klan

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TUESDAY, DECEMBER 23, 2008 07:24 PM, CST

Good evening. How are you this beautiful evening? It snowed last night, so we woke up to a winter wonderland! David is totally loving it! And it is supposed to snow tomorrow night into Christmas! YAY! We are so happy. Please pray that the storm doesn't peter our before it gets to us! Thanks.

God does have that sense of humor! Remember I mentioned how ironic it is that now that we are traveling less the gas prices go down? Well, guess what?!?! We have to travel to San Francisco and Oakland, and lo and behold, the gas prices are going up! I guess we should have seen that coming! Oh well. It is what it is; nothing we can do about it. Well, I can complain, but that doesn't change anything. *Sigh*

David is doing ok. He is still nauseous, so I am still giving him the zofran. Usually he complains if I ask him to take medicine other than his normal medicines. Well, lately he hasn't complained when I give him the zofran, so I know he isn't feeling well. Poor kid. He is getting nervous about his surgery on Monday. Poor guy, he has had more than enough surgeries, and he doesn't want anymore. On that note, he has admitted that he is sometimes sorry he didn't have the amputation. He sure wouldn't have to be looking at a few years of surgery (every few months), or the retraining of his quad muscles, or all the physical therapy he has to go through, or all the limitations he has on his activity (for the rest of his life). Him feeling that way upsets us because, #1 we wanted him to keep his leg, #2 we thought we were doing what was best for him, and #3 we want him to be happy and have a great quality of life. It is so hard to be a parent and have to make such a life-changing decision for your child! We can't go back; we made the decision that the surgeon recommended; and we still think he should have his own leg. We prayed a LOT about it, and it is still in God's hands. If He wants David to lose his leg, that is still a possibility. Please pray for us; Bryon, David, and I; that we can have peace about the decision. Please help David get a great quality of life with his leg so he won't regret keeping it. Thank you so much for all your prayers.

David has PT again tomorrow. He is doing very well. Linda, his therapist, said he is doing quite well. She is very happy to see how well he is progressing so far. He doesn't complain about anything she asks him to do. We are there for almost an hour and a half, and he works hard. Thank you for your prayers for him as he does PT.

Well, that is about it for now. I pray you all have a wonderful evening. Thank you for checking in on David. Thank you for all your prayers. God bless you all. We love you.

MERRY CHRISTMAS!!

Kristi and the Koury Klan

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SATURDAY, DECEMBER 20, 2008 07:55 AM, PST

Good morning. My household is still asleep, so I thought I would take a few minutes to update you.

It is an absolutely beautiful morning here. We are in a heat wave~~it is 15* outside! Yesterday it was 2*, so this morning is much warmer. I am sitting here in front of the cozy fire drinking my coffee. There is still snow on the ground, and we are still praying for that white Christmas. It looks like we will get it, happy us! All the forecasters say snow on Tuesday and Thursday~~~we will see. We sure hope they are right!

David is doing ok. He was a little sore yesterday from the PT he had on Thursday; but he still did his 'homework' yesterday here. We need to get him a small 'medicine ball' so he can do all his at-home exercises. We have the treadmill for him to use, but not a stationary bike. Oh well, he can only do what he can do. But he does do most of them, so that is good. The Physical Therapist also told him that she would like him to use his cane (or one crutch) when he is walking until that leg gets stronger. She said that because there have been a couple of times that he has fallen because his fake knee gives out on him. He doesn't have enough muscle around the implant and knee to stabilize it. That will come in time. The surgeon had to remove so much muscle, and then staple the rest back together, that it doesn't 'fire' in the normal way. He has to train that muscle to work in a different way. But it will happen; again, in time. He is working hard, and I just can't express enough how proud of him I am. He is still getting nauseous, so I am giving him the zofran in the morning and that is seeming to help. I will get some pictures of him with hair so I can update how he looks now. He is so excited that school is out for Christmas break. Two weeks off! Of course, he has surgery in 9 days, and scans in 10 days; which means we will be gone for 3 of the days he is off, but that can't be helped. Please continue to pray for him (and us) as he has this surgery and scans. I know the surgery is necessary, I am just tired of my baby having surgery! This will make surgery #8 in just over a year. Way too many! Anyway, please pray for him.

Well, that is about all. Please remember to keep the Koury family in your prayers. Thank you for checking in on David. Thank you for your prayers. God bless you. We love you.

MERRY CHRISTMAS!

Kristi and the Koury Klan

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THURSDAY, DECEMBER 18, 2008 07:27 PM, PST

Good evening. It is still really cold here, and will be for quite some time. But, from the forecast, it looks like we will have a white Christmas!! Yay! We are sure hoping and praying for that!

David had his Physical Therapy today, and he did great! He will probably be sore, he worked harder today. He even rode the stationary bike for almost 15 minutes! Linda also had him on the treadmill; walking frontwards AND backwards. She said it takes more quad muscles to walk backwards, so that is why she had him do that. She said if we had had him in PT sooner his muscles wouldn't have atrophied so badly, but what is done is done. She also said, after reading the surgery report, that usually people with as bad of a flexion contracture as he had do NOT get their leg straight! She said his surgeon did a fantastic job on him. But his hamstrings are tight from not having PT sooner. He is just going to have to work hard. He is a tough kid, and he will do it! Thank you for your prayers for him and his PT, it went very well today. He even kind of enjoys it. The staff is wonderful there; very sweet. One of the therapists (Linda) is a survivor of thyroid cancer, and the other one is a 7-year breast cancer survivor! They can sympathize with what David has been through with all the poison they call chemo. Anyway, it was good for him, and he did great!

I asked you yesterday to pray for Travis. Well, he died today. He was from Arkansas, and he died at 1:50pm his time. So please remember his family in your prayers. He has 2 brothers and 3 sisters, in addition to his parents. Thank you.

Well, that is about all for now. Have a good evening. Thank you for your prayers. Thank you for checking in on David. God bless you. We love you.

MERRY CHRISTMAS!!

Kristi and the Koury Klan

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THURSDAY, DECEMBER 18, 2008 11:37 AM, PST

Thank you for your prayers about a hotel for us, we are looking at options. I should let you know that we have to have 2 rooms, there will be 5 of us. That is part of the reason it is so expensive. So....... gotta run take David to Physical Therapy. Please continue to pray for him. I will update later. God bless you all. We love you.

MERRY CHRISTMAS!

Kristi and the Koury Klan

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WEDNESDAY, DECEMBER 17, 2008 04:04 PM, CST

Sorry about the 2nd update~~~please pray that we can find an affordable hotel while we are in San Francisco. We are looking, and we can't afford the $400 for the 2 nights that we were quoted. The Family House is closed the week between Christmas and New Year's (of course) so that is not an option for us. We are going to look in Emeryville next. We don't want to be too far from SF, we have to be at the hospital at 7:00am on Monday morning! Please pray we can find something we can afford (that will take a miracle, we can't afford much at all!!!) Thanks!

Kristi and the Koury Klan

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WEDNESDAY, DECEMBER 17, 2008 02:56 PM, PST

Good afternoon. I have a few minutes to update. It is still cold, and beautiful here.

David is feeling ok. Still nauseous in the morning, but otherwise ok. I am going to start giving him zofran if this doesn't stop. He is not sore from PT at all, thank you Jesus! He is still doing ok in school. He wishes it was Christmas vacation already. Friday will be his last day for 2 weeks. He is so excited to have the 2 weeks off from school. No vacation for him, tho. He will still have to have PT. But he did admit it wasn't as bad as he feared. Please keep up the prayers.

I am feeling very down and depressed today. I have learned of another osteo boy who is dying. He was diagnosed back in 2006, at the age of 12. He did not have lung mets or skip lesions or anything like that at diagnosis. Then a year later the cancer metastasized to his lungs. Then a year later it metastasized to his brain (that is common, too). They removed all the metastatic lesions from lungs and brain; but it has returned for the 3rd time to his brain; and now he is on life support. I guess I should clarify that it metastasizes to skull/brain. It is all 'stuck' together there. Anyway, they don't know how long he has. The most recent metastatic brain tumor removed was just this past August. Please pray for this family. The child's name is Travis. I just can't believe this. I hate this so much! I am still praying that David will be a miracle, and survive this, but the odds are not in his favor. I know that God doesn't care about the numbers..............but this is still scary! We are just praying that David lives long enough for the Lord's return. Then we can all be raptured together, and all this won't have mattered!

I am also feeling down because it has been a week since Lucy's surgery. I try to talk to them daily, I will either call or text them, and she did say the future looks a little brighter every day. I am so proud of those 2!! They are fantastic kids (ok, ok, adults!). Remember I said I had a dream the baby was a girl? Well, my daughter, Jennifer, had a dream the baby was a girl, too. Lucy said they had a feeling it was a girl, too, so they named her Amelia. Isn't that a pretty name? I told them it was a baby, not just a blob of tissue, so naming it helps healing (we named our miscarried baby Amanda). So Auntie Amanda is taking care of Amelia. Please don't forget to keep praying for Jeremy and Lucy.

Well, I gotta run. Tonight is the Christmas party at Renown for the Oncology patients and their families. You all have a good evening. Thank you for checking in on David and the Koury Family! God bless you all. We love you.

MERRY CHRISTMAS!!

Kristi and the Koury Klan

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TUESDAY, DECEMBER 16, 2008 07:02 PM, PST

Good evening. It is still beautiful and white here in Carson City, Nevada!!! We are loving it! The sun came out today and dried up the roads, but there is still snow on the grass and houses! Yay! Tonight it is forecasted to be a bit chilly~~2*!! It is about 23* right now as I write this. We are warm and cozy in our house; going through a lot more wood, though. But we love the cold, so it is all good. We are just praying that we have a white Christmas this year.

We had a little change of plans with David's physical therapy. He went today at 3:00. He will still go on Thursday; but we got things started today. He is very weak in the quads, tight in the hamstrings, weak in his right hip with the hip rotation, yada yada yada. He has quite a bit of work to do. One major thing he does NOT have is foot drop! Praise God for that! He has work to do, but he is willing to do that work. He wants his quality of life to improve. He will be going to PT 3 times a week; twice this week, tho. My life just got a LOT busier, but that is just fine. I will be so glad to see my son be as close to normal as possible. Connie was wondering why Dr. O didn't prescribe PT; and our theory is that Dr. O didn't (doesn't) think David will survive, so why waste time and money on PT. Well, I know they only give David a 20%-30% 5-year survival prognosis; but I still refuse to put God in a box!! Only God knows how long David will live, and whether or not this cancer is going to take his life. And even if it does, until then David needs a better quality of life. He gets bored playing video games (to the total surprise of his friends), and he wants to be outside! Not now while there is ice and snow on the ground, but Connie wants to see him being a 'normal' teenager by summer. Hey, sounds great to me! Sounds like a plan I can get on board with!! So that is the plan. Please pray that David can 'handle' the PT well, and we can get that leg working at it's best. They said his legs are about 1 1/2" different in length, so it is going to take several surgeries to get him even. He keeps growing (he has grown 1/2" the past year) so the difference just keeps getting worse! But on Dec. 29 the difference will be less!! Anyway, I wanted you to know that his PT went well today.

Well, that is about it for now. You all have a good evening. Thank you for your prayers and love. Thank you for checking in on David and the Koury Family. God bless you. We love you. ((HUGS))

MERRY CHRISTMAS!!

Kristi and the Koury Klan

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MONDAY, DECEMBER 15, 2008 11:32 AM, PST

Good morning. How are you all this beautiful morning? We are enjoying the white world we see outside. It is absolutely gorgeous! Thanks, Debbie, for sending us some, lol. It is snowing as I write this.

We didn't go to church yesterday. Our church is about 30 minutes away, and I didn't feel comfortable taking David out in the snow. I know his ANC is ok and all that; but I am still anal with him, and I do NOT want him getting sick. He has surgery the 29th, and he needs to be healthy. Also, with slippery walks and such I wasn't comfortable with him walking around outside. I guess we could have brought his wheelchair........we just stayed home. We stayed warm and dry.

David is all set up for physical therapy, finally. He will go on Thursday (12/18) for his first visit. I am sure that will be just an evaluation to see what he can and can't do. Then they will set up a 'game plan' for him. When I called and gave her David's name she said, 'oh, we already have a bunch of information on him.' So they are aware of who is coming in and what his needs are. He is not looking forward to it; but who can blame him? He is worried that the PT will cause pain; and he is soooo done with pain!! Please pray for him on Thursday. He goes at 12:15pm. Please pray that he is not too nervous and they will get him as close to normal as possible. Thanks.

It was good to see Jeremy and Lucy yesterday. They are doing ok. It will take some time for them to heal, but they are doing ok. We had a good time visiting with them. I made sour cream chicken enchiladas, and they were good. I thought Jeremy didn't like them, he doesn't like chicken, but he told me a couple months ago that he does like them; so that is what I made. Lucy is so cute; she said, 'and why is this the first time I have had these?' So my lunch was a hit! I like making things that everybody will eat and enjoy. With the 7 of us that doesn't happen all that often. There seems to always be one person who doesn't like something! *sigh* Such is life! Oh well.

Well, gotta run. As usual I have a million things to do. Thank you for stopping in to check on David and the Koury Family. Have a good day. God bless you. We love you.

Merry Christmas

Kristi and the Koury Klan

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SATURDAY, DECEMBER 13, 2008 08:13 PM, PST

Good evening. I hope you all had a good day today. Guess what?!?! It is snowing!! YAY!! It was super windy last night (it always is when a storm is 'blowing' in) and today it has been snowing on and off all day. The ground is white now! Woo-Hoo!! We are happy about that. And, Debra, I didn't even have to park your car in front of my house, ha-ha!

David is doing ok. He is still getting nauseous; I guess that is just another cross he is going to have to bear for awhile. He is getting nervous about his surgery at the end of the month; and we are getting nervous about his scans at the end of the month! Please remember to keep praying for him, and us. Thanks. We went to CVC again tonight; we missed you, Bob. We saw Laura, and it was great to see her, but we missed seeing Bob. Church was really good. The pastor is doing a series on finding peace at Christmas. We have had such a sucky year, that we need peace this year. It is great to go on Saturday night and Sunday morning (Sunday to our church). We still haven't gotten David plugged into the youth group yet, hopefully soon, tho.

Please keep praying for David. We just found out that there is another boy (young man) with osteo that has been given 2-3 months to live. And a girl David's age that is just about out of options. She had a thoracotomy in October, and just this past week a CT scan showed more lung mets. This is such a nightmare!!!! We just don't get much good news about this blasted cancer! I am getting so discouraged, and depressed about this. It seems like every time we turn around another child is either dying, or has died, or has just about run out of options. Dr. Hasting did tell us that if we can just get David to next October cancer-free, it will be good. But these kids have been fighting for 6 & 3 years, respectively. David has only been fighting for one year! Please, please don't ever stop praying for him! At least right now he is holding his own, and is doing ok. He has lost a couple of pounds, though. Go figure, he is nauseous quite frequently. All I can say is pray, pray, pray! Thanks.

Well, I need to go. You all have a good evening. Thank you for checking in on David. Please continue to pray for Jeremy and Lucy. They are doing ok, and I can't wait to see them tomorrow. I will post again soon. Take care and God bless you all. We love you.

Merry Christmas

Kristi and the Koury Klan

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THURSDAY, DECEMBER 11, 2008 07:52 AM, PST

Ok, here is a P.S. from yesterday. I said we were done traveling. Well, I should have said we are doing less traveling. We are FAR from done traveling!! I only wish! But at least it isn't 2-3 times a month anymore!

Please continue to pray for David's basic health. He is still getting nauseous quite often; almost every morning. I am so tired of my baby being sick. I thought we were pretty much done, for the time being, with him being sick all the time. Please pray he feels better. Thanks. Also, please continue to pray for his upcoming scans. The time is coming up so fast! This month is just screaming by! I would like time to just slow down. Last year I wanted to go by fast, and it didn't! Oh well, I guess it is all perspective! Thank you for your prayers for all of us.

I will post more later. Have a good morning. God bless you. We love you.

Merry Christmas!

Kristi and the Koury Klan

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WEDNESDAY, DECEMBER 10, 2008 05:49 PM, PST

Good evening. I just want to post and let you know how much I appreciate those of you who read this. Thank you so much. I hate to say it, but it is a true fact that when bad things happen to you, you lose friends, family, etc. They just can't handle it so they just abandon you. Sometimes it is deliberate, sometimes not. Sometimes they just get so wrapped up in their own problems that they abandon you in your time of need. So to those of you who are still there, thank you for being there. I have learned a lot about what kind of person I do NOT want to be! I want to be there for my friends and family (like Jeremy and Lucy now) when they need me. Even if it is a quick note, or email, or phone call. I don't want to treat others the way I have been treated. Please pray that God can use me to be there for others. Thanks.

Lucy is doing ok. She had the D&C this afternoon. They were pretty much right on time! They took her in to surgery at 12:05!! David and I got there around 11:00, so we were with Lucy and Jeremy the whole time. Well, we were with Lucy until they took her off to surgery, and then we stayed with Jeremy. I am so glad he wasn't alone during this time. They let her go around 1:45 or so. She said other than some cramping, she was feeling ok. I gave her a book that I had, and read years ago, called "I'll hold you in Heaven" and she started reading it. It is a book for parents who have lost a child through miscarriage, abortion, stillbirth, or right after birth. It is a wonderful book. It is by Jack Hayford, and I recommend it to anyone and everyone who is in one of those categories. It answers a lot of questions you don't even know you have! Anyway, Lucy is ready to take some time to heal, and then put this behind her and move on. Please pray that she will be able to get pregnant again soon, and will have a healthy pregnancy and baby. Thank you so much for all your prayers.

On a side note, we think God has quite a sense of humor. Or something like that. We are soooooo glad to see the price of gas go down, but the timing is kinda funny. When we were traveling to the Bay Area 2-3 times a month, gas there was almost $5.00 a gallon! Now that we are done traveling, gas is less than $2.00 a gallon! Kinda frustrating. Jennifer couldn't really afford the gas in her Jeep, so she traded it in on a Honda Civic. Now we are a family with 2 Honda Pilots (mine and Bryon's); 2 Honda Civics (Jennifer's and Lucy's); and 2 Toyota Tacoma Pick-ups (Jeremy's and Rachel's). When David is driving, in 1 1/2 years, we will see what he gets to break the 'ties' of our vehicles.

Well, I better go. You all take care and have a great evening. Thank you for your continued prayers. Thank you for checking up on David. God bless you all. We love you. ((HUGS))

Merry Christmas!

Kristi and the Koury Klan

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TUESDAY, DECEMBER 09, 2008 10:41 PM, PST

Good evening. We just got home from Jeremy and Lucy's house. I asked if we could come over and Lucy requested I bring some stew~~~she loves my stew. I was glad that I could do something for them. I have been where she is, I miscarried my second child, and I knew she wouldn't feel like cooking. So I made some stew and we brought that over along with some rolls, butter, brownie bites and vanilla ice cream (and chocolate syrup). It was quite the tasty dinner, and we had good fellowship, too. Please continue to pray; she goes in tomorrow for a D&C at noon. They have to be there at 10:45, and David and I are going to go be with Jeremy. We will probably get there around 11:00 or so. I just don't want Jeremy sitting there in that waiting room all alone. Lucy said she would love it if I came, so that is what I will do.

This is sooooo hard. We are tired of watching our children in pain. First we have to watch our younger son go through cancer; and now we have to watch our older son go through the death of his pre-born child. THIS SUCKS!! I am sorry, there is just no other way to say it. We parents hurt to have to watch our children go through pain. We are in our own pain, and then the pain of watching them be in pain!! Arrgghh! I want to just throw my hands up and say 'I give up' but I know I can't!! But can I cry 'uncle' and be done?!?! I want to say thank you again for understanding that this site is about the Koury family. I know I said it before, but it bears repeating that what affects one of us affects ALL of us! Some people don't get that, but those of you who are dealing with cancer know the truth in that. CANCER IS A FAMILY DIAGNOSIS! And my family, the 7 of us, have all been affected by it. Sometimes it can make otherwise 'trivial' things seem soooo much worse. The outside world will never understand completely, and that is ok, we don't expect them to. Thank you for being there for us. Thank you for understanding. Thank you for your prayers. Your prayers mean a lot to us because sometimes we just can't pray and we need others to do it for us (I hope that makes sense). So I just want you to know how much I appreciate you all. Even the ones I have never met, I still appreciate you. Thank you again and again for being there for us.

Well, I am tired. It has been a VERY emotional day. Please don't stop praying for us! And please just say an extra prayer for Jeremy and Lucy tonight. Thank you so much. God bless you. We love you. ((HUGS))

Kristi and the Koury Klan

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TUESDAY, DECEMBER 09, 2008 01:24 PM, PST

Quick update~~~pray for Jeremy and Lucy. They went in to have the ultrasound and the doctor couldn't find a heartbeat. So, the baby died sometime in the last two weeks. They are obviously devastated, as we all are. We are just wondering how much the Koury family is supposed to take. Please keep all of us in your prayers. I will write more later. Thanks for the prayers.

God bless you all. We love you.

Kristi and the Koury Klan

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MONDAY, DECEMBER 08, 2008 04:46 PM, PST

Vicki~~David is a Sophomore (at 14) in High School. Just wanted to clairify that. Thanks for reading and writing to him (and us). I want to thank everyone who writes in the Guestbook. Thank you for checking in on David. God bless you all. We love you.

Kristi and the Koury Klan

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MONDAY, DECEMBER 08, 2008 11:17 AM, PST

Good morning. It is another beautiful day here. Over the weekend our low's were in the low teens, and it was COLD! But I love the cold. It is supposed to snow on Sunday; David said he is happy!! He really wants snow. Right now it is cold and windy. And cloudy; darkish clouds. David said it is beautiful outside.

David is doing ok; I guess as well as can be expected. He was not feeling well again this morning, but he says he is 'ok' now. He is still plugging away with school. He is such a trooper. He has been a trooper this whole year. He did chemo when he didn't want to; put up with all the nausea and vomiting; tried to walk the halls at UCSF while he was dying (we didn't know that then); has put up with more pain than most people see in a lifetime; still does his schoolwork; I could go on and on, but I am sure you get the idea. And 99.9% of all these things he did without complaining!!! Let me tell you, he is one amazing child! He has more bravery and courage in his little pinkie than 99% of the people I know! I am so proud to be his mother. I am just sooooo sorry he has had to go through what he has been through; and will continue to go through. But I know he will get through it; with God! Whatever the future holds, God is on our side and He will work it out for David's best. Like I have said before, it is VERY scary putting my child in God's hands, daily, but at the same time; there are no better hands to put him in! It just isn't easy not knowing what that means. Please continue to pray for David and his health. And please continue to pray for his scans on Dec. 30; yeah, we are getting 'scanxiety' about them already.

Please continue to pray for Jeremy and Lucy; they have another ultrasound tomorrow at 8:30am. Lucy is feeling sorta blah, but otherwise ok. The kids are putting their precious new life in God's hands, and trusting Him to take care of that baby. NOT EASY!! I feel like the Koury family has been through enough! But satan is attacking our family big time (we must be doing something right?), and he will lose, no matter what! So I just wish he would get that through his thick head and BACK OFF!! Oh well. God is still on the throne, and He is still in control! *sigh* We are just so tired of fighting; but we know we can't give up. We can't get too tired and let our guard down. Please pray that we are able to continue this fight, no matter how long it takes. Thanks.

I want to say another 'Thank you' to CVC for the load of firewood. With these bitter cold nights, we need it! Thanks again. We went to church at CVC on Saturday night, and it was great! We still go to our 'home' church on Sunday mornings, but we want to get David plugged in to a youth group; and our church doesn't have one. He needs to be around more High School kids. He has his friends, but we figure you can't have too many friends, right? We have been wanting him to be a part of a youth group for some time, but the last year it was impossible. Our other 3 kids made great friends and had some great experiences with church youth groups; and we don't want David to miss out on that. Please pray that he will not have a difficult time 'breaking in' to a new group of High School kids. Pray that they reach out to him, too. He is a shy child; and he is willing to make the 'first step,' so we need the other kids to meet him halfway. Thanks for your prayers.

Well, that is about all for now on the Koury Cancer Front. I pray you all have a wonderful day. And if you have snow where you are, could you please send us some? We would really appreciate it. Thanks. God bless you all. We love you. ((HUGS))

Merry Christmas!

Kristi and the Koury Klan

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SATURDAY, DECEMBER 06, 2008 01:57 PM, PST Happy 5th Anniversary to my wonderful son Jeremy and my wonderful daughter-in-love Lucy!!

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THURSDAY, DECEMBER 04, 2008 09:07 AM, PST

Good morning. It is cold here, and we love it! David is praying for snow, please pray that we get some. We would really like a white Christmas this year. Like I said before, we had a lot of snow last year and we weren't here to enjoy it! We want some snow!

David is feeling ok. His hair is growing rapidly now. It took a while to start, but now it is really coming in! It is coming in a little lighter than it was before he lost it. So far we can't tell if it is curly or straight, that remains to be seen. But he is doing pretty good. School is going ok. We got his report card for the subjects he just finished, and he got a 91% in Geometry! We are happy with that. J He did better than he thought he would do. He is doing good, considering what he has been through the past year. We aren't pressuring him, he is doing the best he can, and we know it. Please continue to pray that he is able to continue doing so well. Thanks.

I have been pondering what we learned in church Sunday. I will be paraphrasing and inserting what I have learned. Our pastor was talking about forgiveness. I guess God really wants me to understand forgiveness! Anyway, he was saying that God forgives us, we just have a hard time forgiving ourselves. When we don't forgive ourselves, we are saying that God's forgiveness isn't good enough. Or when we say things like, 'but I have sinned so much,' we are saying that God's grace has limits. God's grace covers ALL sins. God says in His Word that He removes them as far as the East is from the West!! BUT satan likes to remind us of our sins to keep our minds off God and on ourselves. If satan can keep us remembering our sin, we become crippled in our Christian walk. God doesn't remember our sin, why should we? And when other people remind us of our sin, they are nothing more than tools of satan himself! And to have your sins and my sins thrown in our faces by satan (sometimes through other people), that is straight from the pit of hell!!! So, when I get reminded of my sins by others (believe me, that has happened recently), I have to realize that they are being used by satan, not God! God would NEVER do that, not even to prove a point about how much I have been forgiven. I want God to use me for His glory, and that means not letting satan get a foothold in my life. The past is in the past; I am forgiven; and I praise and thank God every day for what He has given me. Sorry, didn't mean to 'preach' at you, I am just regurgitating what I have been learning. Thanks for listening.

Well, that is about all for now. Please continue to pray for David and the Koury family. Thank you for checking up on David. God bless you all. We love you.

Merry Christmas!

Kristi and the Koury Klan

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WEDNESDAY, DECEMBER 03, 2008 06:54 PM, PST

Good evening. It was another beautiful day here, in the low 50's and partly cloudy. Our house is nice and warm, though.

There has been a change of plans with David's scans; of course!! Connie couldn't get David in on the 29th, so his scans will be on the 30th. So we will have 2 days in San Francisco. We are leaving Sunday morning (the 28th) to go to S.F. We don't want to leave early on Monday morning, so we will go the day before. And that is Jennifer's birthday, so she gets to spend the day in S.F. She is very excited about that. The only down side is Jeremy and Lucy won't be able to come, so that is a bummer. But the 5 of us will have fun. So the plans are to go to S.F. on Sunday, have a fun day there, and spend the night. Then we will go to UCSF in the morning for David's surgery. It is a quick surgery, but they will have to monitor him for a couple of hours after surgery. Then we will spend some more time in S.F. Then we will go to Oakland sometime that evening. Then David checks in at 9:30am for scans. After check-in he will be injected with the contrast, then as that is courseing it's way through his body he will have his CT scan. Then we will go upstairs to the 5th floor and visit his old nurses. Then, I think around 1:00 or so, we will head back down to the 2nd floor to nuclear medicine for the bone scan. Then we will go home! Then we wait for the results of the scans. The waiting will be the very worst part. We are praying that the scans come back clear. Please join us in that prayer. Thank you.

Well, that is about all I can think of right now. Please keep praying for Jeremy and Lucy and our little grandbaby. She goes back to the doctor next Tuesday, the 9th. Please keep praying that the baby is ok. We, as a family, have been through so much this past year, I am not sure how much more we can take!! As I have been saying for the past year, this kind of stuff happens to 'other people'; and when you are those 'other people' it REALLY sucks! Thank you so very much for your prayers for us as a family. Also, thank you for understanding that this site is about David AND his family! What happens to him affects the rest of the family, and vice versa. Some people just don't get it; and I guess they never will. That is, unless they are in our shoes! Anyway, thank you for your prayers.

I pray you all have a good night tonight. Thank you for checking in on David. God bless each and every one of you. Thank you for caring about and loving David. We love you.

Merry Christmas!

Kristi and the Koury Klan

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TUESDAY, DECEMBER 02, 2008 10:08 AM, PST

Good morning. It is a beautiful morning here; too beautiful! We are really wishing for some snow. It is rather frustrating to us. We love the snow; and last year we had tons and we weren't here to enjoy it! Now this year, so far there is NONE! Grrr. Very frustrating!

Anyway, David is feeling pretty good. We went to Renown yesterday for his doctor's appointment. It went quite well. Connie said that David is doing well. We had some questions answered, too. We are pretty new to this whole cancer thing, so there were some things we didn't know. Like, for example, we didn't know if David would have to change oncologists when he becomes an adult. We were told that since he has a pediatric cancer, and was treated as a child, he will always have the same oncologists (and surgeon). We were very pleased to hear that. If he should recurr as an adult, he will go to an adult hospital (there is NO way he would want to go to Oakland Children's) but his oncologist now would oversee his treatment. So it was reassuring to us that he won't have to change doctors, that is such a pain! Besides, they said they really like David, and no one else can have him!

They don't really know why he is still getting nauseous at times. His weight is now at 121, and we are so happy about that. All his vitals are good, and he is now almost 5' 7 1/2". He is growing, and not just hair, lol! Connie said he needs to keep a casual eye on his knee; parts of it are still numb. We will find out from Dr. O what he thinks about that, will the nerves ever regenerate? But Connie wants David to keep an eye on it in case he gets a scratch or cut or anything. He won't be able to feel it if he hurts it, so he needs to check it regularly. Other than that, he is doing quite well. His next appointment is Jan 12~~we like the appointment when Connie is there.

Please keep praying for David's surgery coming up Dec. 29th. Also, the plans are to go to Children's after his surgery and have his scans done that afternoon. That way we won't have to make a separate trip to Oakland. We are starting to get some 'scanxiety' already. We are praying that the scans come back clear. He has the bone scan and the CT scan. The echo and chest xray are not for another year. Please keep David 'prayed up' before we go to surgery. Thanks.

Well, David is busy with school, and I have the usual housework to do. You all have a good day today. Thank you for checking in on David. God bless you all. We love you!

Kristi and the Koury Klan

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THURSDAY, NOVEMBER 27, 2008 10:28 PM, PST

Good evening. I hope you all had a wonderful day. We had a great day with our children. It was a very peaceful day. I had done quite a bit of baking. I told everyone that maybe I 'overdid' on my baking (LOTS of leftovers), but that is probably because I wasn't able to do any last year! So I made up for it this year, and then some! I sent Jeremy and Lucy home with a lot of food, and we still have lots here. Good thing I love to cook, and bake! But we really had a great day of fellowship and togetherness. I so enjoy being with my family. I am so thankful. So, the 7 of us had a blessed Thanksgiving. This time next year there will be 8 of us!! To the person who is tired of me 'always saying the 7 of us,' get over it! Too bad! I am a proud mother of 4 wonderful children; plus I have a fantastic daughter-in-love; and I am extremely thankful for my family. So there!

David was soooo glad to be home today. Just a year ago we were in the hospital, and he was having chemo. He was so glad to eat and enjoy his Thanksgiving dinner today. He asked me to make homemade pumpkin pies this year. Usually, I just buy them from Costco. You see, making pumpkin pies was something my dad and I did together. I had so much fun with him in the kitchen making pies together. Ever since he died, it just isn't the same doing it by myself, so I usually buy them. This year David wanted me to make them, so I did; for him. I figure he has missed out on so much this past year, that if I can grant simple pleasures for him, I will. So he was thrilled to eat my homemade Thanksgiving feast! Well, actually, Lucy made the green bean casserole; and David had TWO helpings of that! He ate ok. I was hoping he would eat better, but I am happy with what he did eat. He has been feeling nauseous every now and then; don't know when that is going to end! Hopefully soon. He has another doctor appointment in Renown on Monday, I will talk to them about that. But otherwise, he is doing ok.

I want to publicly thank my daughters, Jennifer and Rachel. We have cut as many corners as we can to try to dig ourselves out of the financial hole we are in, and one of those corners was my nails. You see, I have had my nails done for about 6 years. I had to stop doing them because we couldn't afford it. Well, my daughters know how much I loved having my nails, so now they pay for them. They have taken the 'burden' on for me, and I am so thankful for that! Thank you girls!!! I LOVE YOU!!

Well, that is about all for now. I hope you all had a great day. Thank you for checking up on David. God bless you all. We love you.

Kristi and the Koury Klan

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WEDNESDAY, NOVEMBER 26, 2008 12:51 PM, PST Happy Thanksgiving!! I hope you have a blessed day. God bless you all. We love you.

Kristi and the Klan

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TUESDAY, NOVEMBER 25, 2008 11:05 AM, PST

Ok, I just heard from Jeremy and Lucy. Please, please pray. And pray hard! They had the ultrasound. The baby is measuring small, which is not really a big deal; David measured small (and was only 6pounds 7ounces). That is not the concern. She has to go back in two weeks because the doctor is concerned about the baby's heartbeat. He said it should be around 150bpm, and it is only 100bpm. So............I am just requesting, on their behalf, for lots of prayers. Pray for them, they are concerned, of course. They are wonderful kids (ok, adults) and they know that it is all in God's hands, and it is God's baby, but that does NOT take away the human fear!! I, of all people, know that; first hand!! Anyway, that is where we are right now. Thank you for your prayers. I appreciate it more than you know. We cherish the friends we have made through this 'blog' and we love each and every one of you. Even though we don't know you all personally, God does! Thank you again. God bless your day. I have errands to run. Gotta go...............

Kristi and the Koury Klan

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MONDAY, NOVEMBER 24, 2008 05:34 PM, PST

Good evening. Can you believe Thanksgiving is almost here? Wow! It seems like time is just slipping away. This time last year we were in the hospital, and David was trying to clear the Methotrexate from his body. Then, a year ago Thanksgiving he had chemo. In some ways we can't believe that was a year ago, and in some ways it seems a lifetime ago. But, we are happy that this year we are home for the holidays. There is a lot of truth to the phrase 'There's no place like home!' And we couldn't agree more.

We do have a lot to be thankful for this year. Our son is alive, and (so far) cancer free. He is not in remission, technically, but there is No Evidence of Disease in his body, and we are thankful for that. We are all healthy, all 7 of us. We have a warm house, and food on the table. We might not have the best food, but we don't go hungry. We have no money, but we have each other. I was watching the news, and they were talking about reducing stress in our lives over the holidays. One thing to do is remember what is important. And we consider our family to be the most important! So we are so happy that we will all be together for the holidays. They also said that it is the time to 'let things go,' and sometimes let people go! So, I am doing that. They were basically saying (I am paraphrasing a little) that it is more stressful when we have 'toxic' people in our lives. Sometimes we need to just let them go. We can take them aside and ask them to 'bury the hatchet' (the psychologist's words, not mine) (and not in the other person's back); but if they refuse, then let them go. If you have done your best, then the problem is theirs. The holidays are the times to focus on what's important, and surround yourself with the people who REALLY care. So, that being said, I am thankful for the relationship the 7 of us have. Do we always agree? No, we are 7 individuals. But there is a LOT of love in the room when we are all together. And I thank God for the children he has given me, and for my Daughter-In-Love; and my new Grand baby on the way!

David is doing ok. I ask him how he feels, and he says, 'Ok.' I guess that is better than feeling yucky. He is eating pretty good. He is up to 120 pounds, or so. We are pleased with that! This is the most he has ever weighed. He is still a thin child, but we know he is eating. His hair is still growing. He is shaving now, sad. Yeah, when a child goes through something like this, it grows them up WAY too fast. But he will always be my 'baby.'

Please pray for Lucy tomorrow. She is going to the doctor for her first ultrasound. Please pray that everything is ok with the baby. She is feeling ok, just the normal tired and emotional. Please pray for a healthy pregnancy and delivery of the baby. I had a dream about a baby girl, so we will see what she has. They don't want to know in advance; and that it perfectly fine. I didn't want to know with my first one, either. But I would appreciate your prayers for a healthy baby. Thanks.

Well, I need to go make dinner. Have a good evening. Thank you for taking the time to check up on David; and the Koury Klan! God bless you all. We love you.

Kristi and the Koury Klan

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SATURDAY, NOVEMBER 22, 2008 08:46 PM, PST

Good evening. David had a pretty good day today. We had to go to Reno for the day. We have a new Sporting Goods store in Sparks, so we went there. It is called 'Scheels' and maybe some of you have that store where you live. Ours just opened on my birthday! It is so huge! David, Jennifer, Rachel, and I rode the Ferris Wheel that is on the first floor of the store. It was fun! David was a little freaked out when it was stopped at the top, but overall he had fun!

An interesting thing happened, tho. As we got off the Ferris Wheel, (Bryon waited on the ground with David's wheelchair) a lady asked us if David's shirt was true. He was wearing a shirt that says 'Bone Cancer Survivor' and we told her yes it is true. We sure wouldn't lie about that! I was a little confused that someone would ask that; then I remembered that there was a news story about a woman who faked having cancer to get money from people. That made me sick when I heard that! How low can a person go?!?! Let me tell you, cancer is not a 'money making' illness! Just the opposite! We are 'out' double-digit thousands of dollars in the past year. But there are some really sick people in this world! The Make-A-Wish people told us that they have to have a doctors 'proof' of cancer because some parents shave their kids' heads and say they have cancer so the kids can get 'free' stuff! I say again~~~how low can a person go?!?! Sick, sick, sick! If they want to have cancer, they can have David's! I will more than gladly give it to them, if that is what they truly want. But, on the other hand, I wouldn't wish this on my worst enemy! Having a child with cancer is a parent's worst nightmare! Anyway, that was our day today.

David is doing pretty good. He is looking forward to Thanksgiving. He is so happy to be home this year. We will have a nice quiet Thanksgiving; just the 7 of us. Of course, next year will be different with a newborn joining us! We do have a lot to be thankful for this year, and we are very thankful!

Well, gotta go get David's medicines ready. Poor child still has a lot of medicine to take. You all have a great evening; and a wonderful rest of your weekend. Please continue to pray for David. His leg is giving him a bit of trouble; please pray that it is just weak muscles. Thanks. God bless you all. We love you.

Kristi and the Koury Klan

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SUNDAY, NOVEMBER 16, 2008 11:37 AM, PST

Good morning. We are home. I lied; hee-hee. We were only 45 minutes away from home. I didn't know we were so close to home! We went to Squaw Valley, the home of the 1960 winter Olympics. It is only 45 minutes from home; but feels soooo far away. It was a beautiful weekend. We stayed at the Village at Squaw, and it is literally right at the slopes. There was a little bit of snow there, but not enough for us! They really need some snow. They are opening for the season next weekend, and they will be making snow this week. But it isn't the same as God-made snow! But we are home now. Check-out is early, and we were so close, so we are home already. We have things to so today, so it is ok that we are home.

The girls took good care of David. The house is still standing, and they had fun. Jennifer took David to sushi, Rachel made cookies........they had a good time.

Well, that is about it. Thank you for checking in and thank you for your prayers. God bless you. We love you.

Kristi and the Koury Klan

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THURSDAY, NOVEMBER 13, 2008 03:11 PM, PST

Good afternoon. I hope today finds everyone happy and healthy! David is doing good. He is busy with school, as usual. His head is getting more hair, and it is still as soft as a newborn baby head! I love it! He is really looking forward to the holidays this year. He knows he won't be in the hospital this year, so he is really looking forward to them. We are looking forward to them, also. Just to be able to stay home and relax and enjoy them just sounds so wonderful!

I won't be able to update this weekend. Bryon and I are getting away (just 2 hours away) to spend some MUCH needed time alone. We have had such a horrible year, and we need to 'rekindle' our relationship. We need to just be alone together. We have spent more of the past year apart than together, and we need this time. Can we afford it? NO! Is our relationship a priority? YES!! So we will do what we have to do. Please pray for our safety, and please pray for our other children who will be home. I am so glad that Jeremy and Lucy are so close by~~~they will be there for the other 3 children. Thanks for your prayers.

Well, that is about it. You all have a good weekend. If anything earth-shattering happens, I will have one of my daughters update. Thank you for your prayers. I will post sometime after we get home. God bless you all. We love you. ((HUGS))

Kristi and the Koury Klan

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WEDNESDAY, NOVEMBER 12, 2008 09:01 PM, PST

Good evening. I just wanted to update you on Mattie. They were able to remove all three remaining tumors! Praise God! It was a very long surgery for Mattie, but apparently he did fantastic! He is such a brave little boy. Please continue to pray for him as he deals with the pain after this very extensive surgery; actually 3 surgeries! He is such an adorable little boy, and none of these kids deserve the crap they have to go through! Please pray for physical comfort for Mattie, and peace for his family. Also, please pray for >90% necrosis on his tumors. Thank you. I am sure his parents appreciate your prayers; I know I sure do!!

Continue to pray for David. Continue to pray for his healing. I know I have to daily put him in God's hands; and though I now they are VERY capable hands, it is still scary for me! Thank you for your prayers.

You all have a good night tonight. Thanks for your prayers and for checking in on David. God bless you all. We love you. ((HUGS))

Kristi and the Koury Klan

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WEDNESDAY, NOVEMBER 12, 2008 08:06 AM, PST

Good morning everyone. How is everyone this morning? We are doing pretty good. David is still asleep, so I have a few minutes to update.

David is doing quite well. The broviac site is healing nicely. There is a bit of scar tissue at the top of where the hole was, but that is no big deal. His skin is still pretty itchy, but we know that will subside as the site heals. It is strange getting used to his chest without the 'cord' hanging out of it! I mean, I know it was only there for a little over a year, but still. He just has way too many scars on his young body. *sigh*

I asked you a while back to please pray for a little boy named Mattie. Well, he needs your prayers again today. As I write this he is in surgery on the 3 remaining osteo sites. Here is what they are doing, from his mom; "On November 12th, Mattie will have the remaining three tumors removed.

The tumor in the Left Humerus (upper arm bone) will be replaced with a Repiphysis prosthesis (same type that went in the right arm). This will require a reconstruction of the shoulder joint with the hope that Mattie will get to keep most function in that arm.

The tumor in the Right Femur (leg) will also be replaced with a Repiphysis prosthesis. This will require a reconstruction of the knee joint including loping off the top of the Tibia (one of the lower leg bone) so that the artifical knee joint may be mated with the lower leg bone. The knee cap will be preserved.

The tumor in the Left Radius (near wrist) will be replaced by a bone graft taken from the Right Fibula, the secondary bone in right leg between the knee and the ankle. A portion of the Fibula (a non-structural bone) will be removed and will be put in place where a portion of the Radius will be removed. The bone will be screwed/plated/cemented together to the remaining portion of the Radius. The remaining Fibula will be left in place in the right leg.

Mattie's left arm will be in a sling, his left wrist will be in a cast (to protect it) for a month, and his right leg will be placed in a brace to immobilize the leg for several weeks making him wheelchair-bound for at least a month." Please pray for little Mattie. Also pray for his parents. It is so hard to have your baby be in surgery; as we parents of these children know! Thanks.

Well, that is about it for now. You all have a good day today. Thanks for checking in on David. Thanks for all your prayers. God bless you all. We love you.

Kristi and the Koury Klan

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SUNDAY, NOVEMBER 09, 2008 12:46 PM, PST

Good afternoon. How are you all this afternoon. We are sitting here enjoying our nice warm fire. It is a very cold day today; and beautiful! We went camping this weekend, it was fun. It was cold and breezy, but we had a blast. The trailer heater works great! We were actually too warm at night. But that beats being too cold. But this morning we were cold because we ran out of propane so the heater wouldn't work. But we were going to come home anyway, so that is ok. It rained on us this weekend, and the sound of the rain was cool on the trailer. The kids really enjoyed it. Jeremy and Lucy didn't come, so it was just the 5 of us. But we had a great time. We only went about 15 minutes from home, but it still was getting away. We live in just that rural of a place, where 15 minutes is 'out in the boondocks'!! We love it.

David is growing more hair by the day. It is sooooo soft; just like newborn baby hair. Interestingly, chemo has had some permanent side effect on his hairline. He is 14, and the way his hair is growing in it appears that he has a receding hairline. Poor child. He didn't have that before! He had a full head of very thick hair. Oh well. Just something else this cancer has robbed him of; some of his hair. But it is only hair. He has a very cute head!!

David was not feeling well this morning, but after he had some breakfast (I made bacon and pumpkin pancakes) he was feeling better. Now he is upstairs playing video games, wrapped up in a blanket. So he is doing ok.

Well, that is about it. Thank you for checking in on him. Have a great day. God bless you all. We love you.

Kristi and the Koury Klan

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THURSDAY, NOVEMBER 06, 2008 01:06 PM, PST

P.S. to the last post~~~we don't have the $20,000 to spend on travel and medical expenses; but how do we not do whatever we have to do to save our son's life?!?! That is why I have said a cancer diagnosis in your child is financially devastating!! Not just hard, but devastating! We have the fear of our child dying, watching him die, see him in LOTS of pain, plus the lack of money! Anyway, that is where I am now. Thank you for still listening. God bless you.

Kristi and the Koury Klan

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THURSDAY, NOVEMBER 06, 2008 11:15 AM, PST

Good morning. Today is a new day. It is beautiful here in Carson City, Nevada. I have a fire going, and David is busy doing school. I hope this day finds you all well.

I saw this on a Care Pages update for another child. I am posting it here; I needed this. I am dealing with some severe feelings of resentment for some people, and this has helped me put things into perspective.

True/False: The day after the election, regardless of who won, Jesus is still King.

True/False: The day after the election, regardless of who won, our responsibilities as Christians have not changed one iota.

True/False: The day after the election, regardless of who won, the greatest agent for social change in America is still winning the hearts and minds of men and women through the gospel, not legislation.

True/False: The day after the election, regardless of who won, my primary citizenship is still in this order - (1) the Kingdom of God, (2) America, not vice-versa.

True/False: The day after the election, regardless of who won, the tomb is still empty.

True/False: The day after the election, regardless of who won, the cross, not the government, is still our salvation.

True/False: The day after the election, regardless of who won, our children are more concerned with whether or not we spend time with them than with who is President.

True/False: The day after the election, regardless of who won, my neighbor is still my neighbor, and loving him/her is still the second greatest commandment. (Do you know the first?)

True/False: The day after the election, regardless of who won, my retirement still does not match my treasure in Heaven.

True/False: The day after the election, regardless of who won, "Jesus Is Lord" is still the greatest truth in the Universe.

True/False: The day after the election, regardless of who won, we still know that God is in control!

Joshua 24:15As for me and my house, we will serve the Lord.

There are some people in my life who have the 'something for nothing' attitude, and I am sick of it! They don't pay their medical bills, and the healthcare crisis is because of people like that! When I get David's hospital bill and I see that it cost us $31.90 for one prevacid (he takes 2), I know it is because there are people who don't pay their bills! The hospital has to get its money somewhere! And our insurance has spent over $1,250,000 for David, so far, and we have spent (our of OUR pockets) around $20,000!!! And the thought of 'socialized medicine' is scary! I don't have an answer, I am just frustrated. I have someone telling me David is 'lucky' because he got a free Nintendo DS. I beg your pardon? Exactly where is the 'lucky' about what David is going through? This person is jealous because they can't afford to buy their kids a Nintendo DS; so David is 'lucky' because he got one for free. Whatever! Oh well, I am struggling to deal with all this. I haven't 'vented' for awhile, so I was due, lol!

Well, I have to go get things done. Have a good day. Please don't forget to keep praying for David. Thank you for your understanding when I need to vent. Have a good day. God bless you all. We love you.

Kristi and the Koury Klan

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TUESDAY, NOVEMBER 04, 2008 09:58 PM, PST

Please pray for our country!!!

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MONDAY, NOVEMBER 03, 2008 07:22 PM, PST

Good evening. It is another beautiful fall day here. It has been rainy, cloudy, windy (of course), and cold. In other words, wonderful! We are liking this wonderful fall.

We went to the doctor today. David is doing good. We are not to 'worry' about the gallstone unless it gives him trouble; which it isn't. The lump above the hole where his broviac was is just scar tissue; again, nothing to worry about. He is up to 119 pounds~~~woo-hoo!! We are very happy to see that. We will be watching him carefully for a relapse, but we will know it as soon as it happens; hopefully. As far as his prognosis goes, still don't really know. There are no guarantees. Dr. Hastings said that the fact that he has made it where he is with No Evidence of Disease(NED) is a miracle! They did not expect to have him be doing as 'well' as he is at this point. That is what I said a LONG time ago. I said I wanted it to be something that the doctors would not be able to explain; only God got David here. We know that the 2 extra chemos that they threw at him helps, but it is still God that got David this far. Dr. Hastings said that the next year is VERY critical~~~we need to get him through the next year in a continued state of NED. Dr. Su (the surgeon who did David's thoracotomies) admitted that he could be needing more thoracotomies a year after his first; so we have to get him to the end of March, and then to the end of October 2009. Please continue to pray for him. Dr. Hastings also said that he will never be out of the woods; but we already knew that. Having metastatic osteo lessens his chances of survival. So, he will need prayer for the rest of his life. But he has proven that he wants to fight. He has done a wonderful job of fighting so far, and he is still alive. We have talked to the kids (all 5 of them) about this Christmas being a 'small' Christmas; and they have all agreed that this year is about being together celebrating Jesus' birth (that is what Christmas is all about, anyway) and celebrating that David is still alive! Not just alive, but NED!! We couldn't ask for a better Christmas. That is our Christmas gift from God this year. We don't know what next year holds, but we are just going to celebrate this year. Thank you for your prayers so far. Keep them coming, we still need them!

Well, that is about all that is happening here. Thank you again for your love, support, and prayers. Keep praying for our finances. Keep checking in on David. Thank you for caring about him. God bless you all. We love you. ((HUGS))

Kristi and the Koury Klan

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SUNDAY, NOVEMBER 02, 2008 07:28 PM, PST

Good evening. How are you all this evening? We are doing pretty good. It is a beautiful day here. It rained most of the day, and David did not go to church today. Didn't really want to take him out in the rain. It has been a beautiful, wet day. I made the perfect lunch~~~homemade chili. And boy was it good! Jeremy and Lucy came over for lunch, as usual, and it was a good time of fellowship.

Well, we went to the Christmas Crafts Jamboree yesterday; what a disappointment. It was 90% jewelry! There is another one Thanksgiving weekend; we are planning on going to that one. Hopefully they will have more Christmas stuff, being the start of the Christmas shopping season! At least we didn't have to pay to park~~~David's handicapped placard gets us free parking. David came with us, he used his wheelchair. He still can't walk that far without getting really tired! It was a fun day as a family (minus Jeremy and Lucy), just the jamboree was a disappointment. But then we took the 'scenic' (aka long) way home and were in the snow for awhile. It really was a beautiful day. And when we got home I made Chicken Potato Soup for dinner; yummy!

David's broviac site is healing very nicely. It has a scab that should fall off in a week or so. There is some scar tissue above the 'hole', but that is not a big deal; just feels strange. He has a doctor appointment tomorrow, so we will see what they say. He has some fuzz on his head, and his moustache and eyebrows are coming in really good! And he has some fuzz on his chin! Yikes! He needs to start shaving now. He has more hair on his face than on his head! But it is starting to come in. We keep teasing him that it is going to be curly~~~we will see. I can't wait to see what his hair looks like.

Well, that is all that is happening here. I will post after his doctor appointment and let you know how it went. Thank you for checking up and in on David. Thank you for your support and your love. God bless you. We love you.

Kristi and the Koury Klan

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FRIDAY, OCTOBER 31, 2008 05:03 PM, PDT

Good afternoon. I hope you are all having a good day. It is cold, cloudy, and windy (duh) here. We were going to go camping this weekend, but now we are not. We are bummed, but we will get over it. It is just too windy for the trailer; Bryon is afraid of the trailer being damaged in the wind. So.....we are spending the weekend at home.

David is feeling pretty good. His chest is still kinda sore, but he is sooooo happy to have that broviac out! He is so funny. He wants to 'play with it' and shoot water through it, like I did when I flushed it when it was inside of him. He is a silly kid. But it was inside him for over a year, and he wants to see what happened when it was flushed. Crazy child.

Tomorrow we are going to Reno because the annual Jeff Williams Christmas Crafts Jamboree is in town! We love going there and looking at all the things. It gets us in the holiday mood. And it gives us some ideas for the holidays. Can't buy anything, but we have fun anyway.

I read something a couple of days ago. It says, "In patients with localized disease the 5-year survival rate is at least 70%; patients with metastatic or recurrent disease have <20% chance of long-term survival despite aggressive therapies. These figures have changed little in the past 2 decades. This review focuses on the current therapy for osteosarcoma, and highlights emerging strategies that will hopefully change the outlook for patients with this disease." As you all know, David's was metastatic at diagnosis. I am hoping these studies will change the outlook for children with this disease; but not just for the future, but in time for David. It makes me sick that not much has changed in 20 years!! This flipping cancer is so rare, they don't have enough data to know if anything helps! Sorry, I know I am 'beating a dead horse,' but unless you are in my shoes you don't understand how scary this is. To know that they can't tell us anything really positive sucks! Anyway, just thought I would tell you that; I just found this out.

Well, this will be our last Thanksgiving and Christmas with the 7 of us. We are so looking forward to the holidays this year because we spent Thanksgiving and Christmas in the hospital last year. But this will be the last year with just the 7 of us. Our older son and daughter-in-love have informed us that they are making Bryon and I Grandparents!!! We were due for some good news in our life!! And that is such good news! So sometime early next Summer there is going to be a new little Koury!! So next Thanksgiving and Christmas there will be 8 of us!! Woo-Hoo!! Praise God for the blessing of a new life. Our other children can't wait to have a little neice or nephew! The whole family is sooooo excited!

Well, that is about all the news going on here. Please keep praying for David. Pray for a cure for this horrible monster. Please pray that David is in that <20% category. Thanks. Have a good evening. Take care. God bless you all. We love you.

Kristi and the Koury Klan

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FRIDAY, OCTOBER 31, 2008 08:12 AM, PDT

(I wrote this yesterday~~~don't know what happened to it!)

Good afternoon. How is everyone this afternoon. I thought I would update on David post surgery. He is feeling good. He said his chest is sore, but otherwise ok. Children's Hospital called to see how he was doing, and he said fine. No post surgery nausea, vomiting, or fever. He is excited to be able to go back upstairs. He had to sleep downstairs last night; they didn't want him going upstairs just in case he wasn't stable on his feet, or whatever. So he slept downstairs on the futon. But he is done with school for today, and is now upstairs playing games. And tomorrow is a holiday, so he is excited that he has no school tomorrow. For those of you who read this who are not from Nevada~~~tomorrow is 'Nevada Day' so it is a state holiday. It is the day Nevada was inducted into the union, and we still celebrate it. I grew up in California, and I remember 'Admissions Day' being celebrated~~~not sure if they still do it or not. But the state of Nevada still celebrates it. So my whole family, all 7 of us, have the day off tomorrow! Cool, huh?

Well, I wanted to post and let you all know how David is feeling. He says it is still strange to not have that thing hanging out of his chest~~~~good strange! We are very happy that it is GONE!!!

I gotta go. You all have a great afternoon. Thanks for checking in and up on David. God bless you all. We love you.

Kristi and the Koury Klan

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WEDNESDAY, OCTOBER 29, 2008 05:22 PM, PDT

Good evening. I will give you the scoop on the day today. Are you sitting down? Ready? Ok, here goes.

We left at 3:30am like we wanted to. It was an uneventful trip, just long. We got there around 7:45. We went to the Outpatient Center and Bryon and I got some coffee, me decaf. Then we decided to go ahead upstairs because we were supposed to be there at 9:00. Well, we sat there for awhile, then around 8:20 or so they called us in to do the pre-op exam. I told them that we hadn't been down to the oncology floor because they (the surgical floor) told us that the oncology department didn't open until 10:00. Since David's surgery was supposed to be at 10:40............anyway, we hadn't been there yet. They then took us over to the main hospital to the same pre-op room that David was in when he had his thoracotomies. Well, they had the wrong David. There was another David scheduled for an open heart surgery, and his surgery was to be at 10:40!!! So we had to go back to the Outpatient Center and found out that my David's surgery was NOT rescheduled; it was still supposed to be at 12:40. Grrrrrrr. So we came early for NOTHING!! Or so we thought. Then they told us that there was a patient whose surgery was on 'hold', so they put David in that spot. Connie came in and told us that the oncology department opens at 9:00, and people are there at 8:30. Very convoluted mess!! But after she did her exam of him he was cleared for surgery. So he went into surgery at 11:00. He went in like such a brave kid. He was scared; but he didn't even want the 'happy medicine' to calm him down. We were (are) so proud of him. The surgery went well. We got to go in to see him at 11:45. The nurse said he was awake and happy. She said he was so cute because he kept picking up the sheet and looking at his chest! Keep in mind, that broviac has been part of his life (and body) for one year and 10 days! And, yes, they let him keep it!! They said they send things that were in the body to pathology, so they cut off the part that was sticking out of his body, and sent the rest to pathology. He was happy to keep it, crazy kid! So they monitored him for about an hour, and we left the hospital at 1:00, and we got home at 4:40; yeah, don't know how we made it home so fast! I wasn't driving, lol. So that was our day. David is feeling good, and is very happy. And we are happy, too!!! Yay! Now we don't have to go anywhere for 2 whole months (except Renown monthly). David's leg-lengthening surgery is two months from today! So we get to be home for 2 months! Yay! *whew*

Well, that is what is happening here. I will post other news when I get the 'green light' to do so. You all have a good evening. Thank you for your prayers. God bless you all. We love you.

Kristi and the Koury Klan

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TUESDAY, OCTOBER 28, 2008 07:01 PM, PDT

Good evening. I have an update on David's surgery. It will be at 10:40 tomorrow, not 12:40. So we have to be there at 9:00. And we also have to go to the oncology clinic on the 2nd floor (the surgery check-in is on the 3rd floor) after we check in. That is good, because David won't have to 'starve' as long. But it means that we have to leave early. Bryon wants to leave at 3:30 because we will hit rush-hour traffic in Oakland. He would rather be there early; so would I. I hate being late, and this is something very important! We want to make sure we get there early enough. Rachel is going with us, Jennifer will stay home. Rachel said she wasn't there when they put the broviac in David, so she wants to be there when they take it out. Please pray for our safety, and for David; he is scared. Also, I know this is strange, but please pray that they let him keep his broviac. He really wants to keep it. He kept one of his chest tubes. Connie said she doesn't even begin to try to figure out the psyche of these kids, and why they want to keep things. But she said it has been a part of David's life for over a year, and it is something he wants to keep. So please pray that they let him keep it.

Well, that is about all for now. We need to go to bed soon. Thank you for your prayers. Thank you for caring about David. God bless you. We love you.

Kristi and the Koury Klan

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MONDAY, OCTOBER 27, 2008 09:53 AM, PDT Good morning. It is another beautiful morning here. Very cold; but clear with bright blue skies. The trees are gorgeous, with all their fall colors.

We did not get to go to church yesterday. Bryon had to go to work (worked 11 1/2 hours) and David wasn't feeling well. I am way more protective of him now, and if he isn't feeling well, he stays home! We did get our flu shots Saturday, so he could be feeling blah because of that, but we aren't willing to take the chance. Plus, he has surgery on Wednesday, so we want to make sure he is healthy enough for surgery. Please pray for him. He is scared for this surgery. Relatively speaking, this is a 'minor' surgery, but he is still scared. This surgery is nothing compared with the others he has had, but the poor guy is still scared. I don't blame him. I just wish it was his last surgery. He will have surgery on his leg exactly 2 months after the broviac removal! Then he will have more leg lengthenings every 4 months or so until he is grown. Anyway, I just wish he was done with surgeries!! I am tired of watching them wheel my baby away from me, and he is always upset that he is going to surgery. I hope that makes sense. Please pray for him as he has this surgery. I am looking forward to not having to take care of that thing, and having his skin clear up! I am tired of worrying about it getting infected (it is weepy now), and having to cover it just so he can take a shower, and seeing that thing hanging out of his chest!! So we are all excited, and he is just a little scared. Two more days!!

Well, you all have a great day today. Thank you for checking up on David. God bless you all. We love you.

Kristi and the Koury Klan

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FRIDAY, OCTOBER 24, 2008 02:47 PM, PDT

Good afternoon. It is another beautiful day here in Carson City, Nevada! Cool, breezy, and just downright beautiful.

David is feeling ok. He is doing school work right now; Friday is test day! Please pray for him. Geometry is giving him a lot of trouble, and I never took geometry, and I can't afford a tutor! So please pray that he 'gets it' soon! Thanks.

Tomorrow we are getting our free flu shots! Yay! We were told it is imperative that David gets a flu shot, and Bryon and I decided it would be good for us to get one, too. So that is what we are doing tomorrow!

I just got a call from Oakland Children's Hospital~~~we are doing the happy dance! David is getting his broviac out on Wednesday!! Woo-Hoo!! That will be cause for celebration! David is already scared (he has had WAY too many surgeries), but he is also excited, too!

Well, that is all that is going on now. Thanks for visiting and checking up on David. You all have a great day. God bless you. We love you.

Kristi and the Koury Klan

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WEDNESDAY, OCTOBER 22, 2008 02:34 PM, PDT

Good afternoon. My heart is heavy right now. I have just learned of two more deaths of young men from this monster. One was a 21-year-old, the other was a 16-year-old. Let me tell you, I do get so scared every time I hear of another death from this osteosarcoma monster!! I don't mind saying that I just don't get it!! So much money goes to breast cancer research, colon cancer research, lung cancer research, etc. What about all childhood cancers, especially osteosarcoma? Even leukemia and lymphoma have better research that osteo! It makes me so angry! No child should have to die of this (or any) monster. I hate that my son has to have a rare cancer that it seems so few people ever live long term from! And then we were told in July that his prognosis is 'worse than we originally thought', and that was only a 30%-40% chance of a 5-year survival. So what are they going to tell us when we get the chance to really talk to them? Well, I am NOT going to put God in a box! I am going to listen to what they have to say, and then wait and see what God does. We know that David is on loan to us; and we dedicated him back to God when he was only 4 weeks old. So, that being said, he is God's child; and his life is in God's hands. I just think I need him more than God does, and I want more time with him. But I will have to accept whatever God has in store. It just sucks! But I know, as I have said before, that God is not the author of death and disease. This is not God's fault. This is the work of satan, and he will NOT win, no matter what! Ok, I am done with that.

Well, David threw us another curve ball. I tell you, he is a pro at that! You never know what I am going to write, he always keeps us guessing! We got the reports of his scans today. There are some 'questionable' things on the bone scan, but nothing that looks like it is cancer. It is all related to the implant, and also things on his left (good) leg that are there because of that leg doing all the work of walking for so many months. Just things they want to keep their eyes on. And some 'faint activity' on his rib that was broken during his thoracotomy. Things they will keep tabs on. The CT scan showed spots on his lungs that are "in association with surgical clips, in areas of prior nodule resection which are unchanged or slightly diminished in size since the previous exam." They also noted the broken rib (healed). Now the curve ball. And I quote, "Incidental note is made of a gallstone." What is up with that?!?! This child cannot catch a break! Of course we are not worrying about the gallstone; it is not causing any trouble. It is just kinda funny; in a sick way; that there is always something with this child!! We can never truly and totally let our guard down. *sigh*

Well, that is about all for now. Keep checking, you never know what he is going to cook up next! He sure keeps life interesting, and us hopping! You all have a good day. Thanks for checking in on David. Thanks for your love, prayers, and support. Have a good day. God bless you. We love you.

Kristi and the Koury Klan

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TUESDAY, OCTOBER 21, 2008 09:37 AM, PDT

Good morning. It is a very cold and brisk morning. Oh, and beautiful! David is feeling pretty good this morning. I gotta tell you, last night he ate a LOT! I made tacos, and he ate 6! Yes, I typed the right number~~6!! I was thrilled to see him eat so much! He hasn't eaten that much in a year! Actually, I don't think he has ever eaten that much! So it was great to see him eat.

I have a prayer request for you. There is a little boy I am following on the internet who also has osteosarcoma. Well, he is only 6 and he has it in 4 places. Here is what his dad said: The diagnosis is: multi-focal, synchronous osteosarcoma. He has four tumors in his extremities: the upper portions of the right and left Humerus, which is the bone that connects the shoulder to the two lower arm bones (the radius and ulna), the lower (distal) left radius (right near the wrist) and the lower (distal) right femur (just above the knee joint). That means he has it in both arms and his right leg. He had surgery on his right arm yesterday, and they are having problems getting his pain under control. I would like you to please pray for this little boy. His name is Mattie. As far as the plans are now, his next surgery will be mid-November. I am not sure which bone they are going after next, but this little guy has quite a hard road ahead of him. Thank you for your prayers. I know the family will appreciate it.

Please pray for David and school. He is doing it, I just want to make sure he is understanding it. He is struggling a little bit, but this year is harder anyway. Geometry is not easy; and with the 'late-effects' of chemo.........other parents know what I mean. Chemo also causes learning disabilities, and we are trying to stretch David's brain so he doesn't have any learning problems. Anyway, please keep his education in your prayers. Thank you.

Well, that is about it for now. Thank you in advance for all your prayers. Thank you for you love and support. Have a great day today. God bless you. We love you. ((HUGS))

Kristi and the Koury Klan

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MONDAY, OCTOBER 20, 2008 04:17 PM, PDT

Good afternoon. Today has been an 'ok' day around here. David is getting a mouth sore, poor kid. I know it seems kinda late for a mouth sore, but it is what it is. Connie called and said his blood is 'recovering' but it is doing it slowly. His ANC is 1200. Like I said in a previous post, I am used to his ANC being 10,000+ about this time. But he is usually on GCSF, and now he is not. So.................his body is recovering, just a lot slower than I am used to. But at least it is going in the right direction! He is still rather tired, but we know that it is going to take some time before he feels 'good' again. We will just be patient and wait. We are waiting for him to start growing hair, too. Nothing yet! We keep teasing him that it will be blond and curly (like his mom), but he says NO curls! Bummer. I got my curls from my dad, and I would love it if David had curls; but he doesn't want them! We will see. He said the blond is ok, just not curly. Again, we will see. We are anxious to see how his hair grows in. He has just the faintest (barely visible) beginnings of eyebrows. Just stubble for eyelashes, nothing new. Oh well, that will all come in time.

Please continue to pray for our family and our finances. I will be looking for someone who needs child care. I need someone who will be able to work with my schedule, with David's surgeries and scans and Dr. appointments and all. I have no problem taking children with me to Reno for the doctor appointments, but it is all the other stuff that needs to be done at Children's Hospital that I won't be able to take other children with me, obviously. Please pray that God will direct people to me. I know of people who say their finances are 'in the toilet'; well, ours have been flushed! Everyone who has a child with cancer totally understands what I am saying. There was a teenager on our news last week that had cancer (leukemia, I think), and he said that cancer is the most expensive disease there is. Boy, is he right! And when it is a child.........you do whatever you have to do to get the treatment you need to help them. But it is financially devastating!! Anyway, I would just covet your prayers for us. Thank you.

Well, that is about it for now. Thank you for all the messages to David in the guestbook. He loves mail, snail and all other kinds. Please continue to pray for David. As I have said before; his fight is far from over. But we are just trying to get down to a 'regular' life with him. Thank you for all your prayers. Thank you for your love and support. God bless you all. We love you.

Kristi and the Koury Klan

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THURSDAY, OCTOBER 16, 2008 02:35 PM, PDT

Good afternoon. It is a beautiful day here, but much too warm for me, LOL. I do so like the cold. I am ready to just enjoy being home this winter, not spending the year running back and forth to Oakland. Woo-Hoo! On that note, I want to say a public 'thank you' to Carson Valley Christian Center for the firewood. We absolutely CANNOT buy firewood this year; and our wood-burning stove is our sole source of heat! My house is almost 2550sq. ft. (I am not bragging, just trying to explain) and the stove is in the family room downstairs. It is in the room we spend most of our time in. I need to keep that room warm for David. The bedrooms are warm enough to sleep, and we all have flannel sheets, so night time is no problem. Plus, David sleeps in sweats or sleepers (yeah, they still make them big enough for him), so he is warm enough at night. Besides, heat rises anyway. I just have to make sure I keep the downstairs warm enough for him~~~can't have him getting sick! So we are VERY appreciative of the wood that was given to us. Thanks guys!!

David is doing ok right now. He is still pretty tired, but that is to be expected. His counts are rebounding, just very slowly! His ANC now is only 720. Remember, anything below 1,000 is a high risk of infection! He usually rebounds very rapidly; but he is usually on GCSF, and he isn't now. But that is ok, his body is taking it's time, but it is working. He is just busy doing school and playing. I am so proud to be his mom. I am so glad he is my son. I just pray I can be the mom he needs. He is such a great kid! I wish you all could meet him.

I forgot to let you all know that Rachel will not be going to Iowa. It was decided that she wasn't needed there after all. She was quite disappointed; she really wanted to go. But that is ok. Maybe another opportunity will present itself for her to go somewhere some other time. She has been busy house-sitting (and dog-sitting) for the parents of her old supervisor. It is strange when she is gone, but it is something we just have to get used to. The children are growing up, and I know I can't hold onto them forever (tho I wish I could). Anyway, sorry I forgot to tell you that sooner.

Please pray for Teagan~~she has her scans tomorrow. Please pray that she remains cancer-free. We have been told that osteosarcoma has a 99% recurrence rate, so we are praying that David, Teagan, and Chris are all in the 1% that it NEVER comes back in. Actually, we pray that all of our osteo buddies are in the 1%; but we already know of all of them who it has already recurred in. Please pray for all of the kids that we have met on our support group website~~~some of them are still really struggling with the relapses. And we have learned of two more deaths from this monster. One of them was a girl David's age. Actually, she was about 4 months younger than David. She died one month to the day after she turned 14. Like I have said before, every time another child dies from this I get scared. I know David is in God's very capable hands~~~~but that doesn't mean he won't die. It is so easy to say that God is in control when you are not 14 staring death in the face~~~~or the parents of a 14-year-old child staring death in the face! I know in my head that God is in control; but I don't want to lose my baby! Sorry, got carried away again. Just please remember to pray for David every day. Like I said before, his fight isn't over; never will be. But we want to enjoy this time of reprieve.

Well, that is about it for today. Thanks again, Rob and Alan, for delivering the wood. Thank you CVC for the wood. I pray you all have a good day today. I will post more soon. You all have a good day. God bless you. We love you. ((HUGS))

Kristi and the Koury Klan

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MONDAY, OCTOBER 13, 2008 09:40 PM, PDT

Good evening. I am sorry I haven't updated yet; very busy afternoon. Thank you for your patience.

Ok, here goes. We went to Renown this morning for David's doctors appointment. The doctor told us that the bone scan looks good, but he wants a closer look at it. He said that there is a distinct line on the bone where the implant joins the bone~~~not cancer!! He just wants a closer look at the scan; but, again, NOT CANCER!!! Woo-Hoo! He doesn't have any results of the chest xray, so he can't tell us what that looked like. He isn't concerned, though. The echo shows that his heart is fine! Woo-Hoo!! And the CT scan is clean! Woo-Hoo again!! He said there are 'spots' on his lungs that are just scar tissue from his thoracotomies. Of course they will still watch those, just in case, but David is officially cancer-free!! Praise God!! They are going to be very pro-active with scans for him; given his history, but we are rejoicing now that he is cancer-free! They will be playing a delicate balancing act with David's scans~~~don't want to do them too often. But......the cancer was sooooo aggressive in David that they have to make sure they do them often enough to catch anything early. So, that being said, we can just relax now and get back to life. Yes, our lives have been forever changed and will NEVER be the same again, but we are rejoicing that we have our son back. The doctor will be scheduling the broviac removal for sometime in the next 2-3 weeks. That we cannot wait for! That will be the last thing that needs to be done for us to get back to 'normal' again. That will be cause for celebration, let me tell you! Then David can take a shower normally; go swimming; whatever he wants to do relating to water. His next appointment with the doctor is Nov. 10. He will have his monthly check-ups. The only bad thing about the broviac removal is they will have to do his blood draws through a needle., bummer. But David said that is better than keeping the broviac! Taking care of it is a pain in the butt!! I have been doing it for a year, and I won't be sorry to see it go! Plus; it just isn't right to see something hanging out of my child's chest! Anyway, that is what happened today. Please praise God with us! But please don't stop praying for us. David's fight is not over, just for now it is. And we are just taking one day at a time; thank you Jesus!!

Well, that is about it for today. Thank you so very much for your prayers, please keep them coming! I told you that you would be praying for David for the rest of his life! Please pray that he stays cancer-free! Please continue to pray that he is able to be a regular kid again. Thank you. Have a good evening tonight. God bless you. We love you. ((HUGS))

Kristi and the Koury Klan

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FRIDAY, OCTOBER 10, 2008 08:02 PM, PDT

Good evening. How is everyone tonight? I am sorry I didn't update while we were gone~~~didn't bring the laptops with us. Even if we had, we had a room at Family House that did NOT get internet; so I wouldn't have been able to update anyway.

Ok, here goes. We left bright and early Thursday morning to go to San Francisco. David threw up on the way, poor kid. After a while he started feeling better. We got to San Francisco and had lunch in the UCSF cafeteria. Then David had his xray done. Then we saw Dr. O'Donnell. He said he is very proud of David. Remember, several months ago he told us that David started out so far 'behind the 8-ball' that his progress was amazing. Oh, by the way, David walked in there with no assistance~~~no crutches or cane. Dr O'Donnell even told David that he made him proud. We are all set for surgery on Dec. 29th. We aren't sure what time, yet. They will call us when it gets closer to the time. Then we went to Fisherman's Wharf and had dinner at Bodine's. Then we went back to Oakland. Friday (today) we checked in to Radiology at 8:30 am. Then David had a chest xray. Then Bryant injected the contrast into David's broviac. After that he went in for a CT scan. Then he had an echo. Then we got to eat! Then at 11:30 we went in for the bone scan. Let me tell you, that was weird! The bone scan showed part of his femur, then it stopped, and picked up again below his knee. There was this blank space of nothing. I mean, I know he has an implant there, it just looked weird on the bone scan. Then we checked out of the Family House and came home! We were so glad to be going home. And it was snowing as we got closer to home; like before we reached Lake Tahoe (which is only 20 minutes from our house). When we got home it was snowing and COLD! But Jennifer had built a fire, so the family room was nice and warm. So, we are home now! Yay! It feels strange to not be planning our trip back to Oakland. Nice, but strange.

We didn't get any results of his scans~~though the bone scan we could see and nothing 'lit up' except growth plates. David has a Dr. appointment in Reno on Monday, so we hope to have the results then. The one we are most curious about is the CT scan~~we want NO spots! Oh, before his echo, and after going to San Francisco, Andrea came and told us that David was very neutropenic and should wear a mask! We didn't expect the Meth to lower his counts; it usually doesn't; but I think David's body has just had enough!! So she brought us some masks and he wore them. So, please pray he doesn't get sick. We didn't know his ANC was so low. Oh, when we were in San Francisco we got to see the Blue Angels! They were just flying around, doing their thing. This weekend is 'Fleet Week' in San Francisco, so the Blue Angels are there. That was very cool! They are incredible! And they sure do put on a show! So that was our two days in the Bay area. And, again, we are very glad to be home.

Well, that is about it for now. I will post again soon. I will for sure let you know what we find out about his scans. Please don't forget the party on Sunday; for those of you who can come. Have a good evening. God bless you all. We love you. ((HUGS))

Kristi and the Koury Klan

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WEDNESDAY, OCTOBER 08, 2008 10:46 AM, PDT

Good morning. I have had a fire in the fireplace for the last two mornings! I love it! It is only in the morning, to save wood, and the weather is nice in the afternoon. But we are happy to need to burn again. And this weekend it is supposed to snow; yay; so we will really need the fire then.

David is feeling somewhat better today. But.........he is getting the mouthsores (mucositis) again. He is rinsing after meals, but he feels the sores coming on. Please pray that they aren't too bad and that they go away fast. Thanks.

We are starting to get the 'scanxiety' now. We leave tomorrow for San Francisco for David's doctor appointment with his surgeon. David hopes to walk in there with no cane or anything. He wants to show the doctor how well he can walk. And I hope he will see just how different the lengths of David's legs are. We will be talking about the surgery. We need to find out how much he is going to lengthen David at one time. After the appointment we will head to the Wharf again~~~we are bringing the wheelchair; David can't walk that far. He also has a hard time walking on uneven ground. So it will be fun tomorrow. Then on Friday we start at 8:30 over at Children's. We will register for the scans, then David has to have the contranst injected into his broviac for the bone scan; while that is coursing through his body we will get the CT scan, echo, and chest xrays. Then he has the bone scan around noon. Then we will go upstairs to the 5th floor and see Chris. Chris will be having his last chemo! And we want to see all the nurses, too. Then, the best part, we will get to go home! We hope to have the results of the scans Friday, we want to know. Then David has an appointment with his oncologist in Reno Monday at 11:30. He will have monthly check-ups in Reno for the first year; and scans at Children's Hospital every 12 weeks for several years. So we will still be semi-busy still for several years; just no more chemo!! Woo-Hoo! Please pray that David's scans come out clean and clear. As soon as that happens we can schedule the removal of the broviac! We need clean and clear scans! Thank you for your prayers so far~~don't stop now!

For those of you who I don't have addresses for~~don't forget David's 'end of chemo' party is Sunday, October 12 at 4:00. It will be held at the First Baptist Church located at 1311 Centerville Ln. in Gardnerville. Bob and Laura, I really hope you can come. Wendy and Teagan (and the boys, too) I hope you can come. And anyone else who would like to come! This is a party to celebrate the fact that David is done with chemo; and to thank everyone who helped get us through this time. I hope to see a big turnout. We can't thank everyone personally, so this is how we are doing it. The prayers, love, and support was wonderful. But please don't forget about us~~~this is far from over. Pray we can 'unbury' ourselves financially. Anyway, please come to the party; everyone is welcome!

Well, that is about it for now. Autumn, if you are reading this, I really hope to see you Sunday. You have been such a wonderful nurse and friend this past year. We are really going to miss you! Although, we will still see you, just not as often. Anyway, I gotta go get ready to leave early tomorrow. We have to leave by 7am! Thanks again and again for all your prayers. Thank you for checking in on David. God bless you all. We love you, ((HUGS))

Kristi and the Koury Klan

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MONDAY, OCTOBER 06, 2008 08:02 PM, PDT

Good evening. Guess where I am writing this from. I am not sure you can guess. Well, maybe you can. I will give you a hint~~~they did NOT do another blood draw. So where are we? We are home!! Yup, home! Dr. Lal said that David being at .10 was good enough; they know he will still drink. He did get another Leukavorin after the earlier blood draw, so the doctors said we could go. We didn't get out of there until around 2:00; but we got out! It was bittersweet leaving. All the nurses were sad to see David go, but glad he is done.

Now comes the scary time. The hospital was my 'security blanket' and I could just put David in their hands and know he was taken care of. It is hard to explain, but it is scary to know he won't have scans for 12 weeks (after next week). When we are at the hospital they are always checking on things~~doing the necessary tests more often than every 12 weeks. My fellow osteo friends know how aggressive this cancer is; and it was VERY aggressive in David; so 12 weeks to be 'on our own' is just scary. It is just something we will have to get used to. It is a whole new life; a new 'normal' for us. But it is also so exciting to know that we won't be spending 2 weeks out of every month in the hospital!! Yay! Praise God with us!

Another HUGE praise~~~Bryon does NOT have jury duty! Woo-Hoo! So thank you for your prayers. Now we can both go to San Francisco and Oakland. He was upset thinking he might miss these very important appointments. At the San Francisco appt. we are going to be talking about the surgery to lengthen David's leg. That surgery will be Dec. 29. And the Oakland appt. is all the scans~~and of course Bryon wants to be there!. Oh, David had his audio test today; he still has normal hearing, another praise; but not the echo. He will have the echo, bone scan, CT scan, and chest x-rays on Friday. It will be a busy morning. Then we will visit Chris~~it will be his last chemo~~and visit the nurses. I need to take a picture of David drinking Gatorade for the bulletin board in 5south. David is their rock star, he is their example for how much one child can drink in order to clear the meth. He drank 270oz of Gatorade in one day!! That is in addition to the IV hydration! No wonder his face is very puffy! But they all love him there (well, duh) and they said they will really miss him. Anyway, sorry for getting sidetracked.

Well, I hope you all have a good evening. Thank you again for your prayers. I will post again and let you know how David is feeling, which is not too great right now. Stay tuned. God bless you. We love you.

Kristi and the Koury Klan

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MONDAY, OCTOBER 06, 2008 08:37 AM, PDT

Good morning. David is still sleeping as I write this. He has had a very busy weekend. Saturday he was bored, so we asked Chris if he wanted to play, and he said yup! So the boys played video games all day. Then on Sunday, Chris came and asked David if he wanted to play, so they played games all day on Sunday, too. And then our dear friends from way back, Larry and Michelle, came for a visit. It was great to see them. Rachel and their daughter, Bethany, have been friends since they were toddlers! So Rachel and Jennifer had fun with Bethany; Bryon and Larry chatted; and Michelle met Nita and the three of us visited. So it was a fun day.

David's meth level at 24 hours is supposed to be <5, and it was 7.43. Remember, we can't go home until it is <.1.0. So David drank a LOT of fluid yesterday trying to clear the meth from his system. He is given the Leukovorin rescue drug every 6 hours; and he is on a lot of hydration, so we figured everything is good. They drew blood at 5:00am Sunday, and his levels were at 1.52, so we thought they would be low enough this morning. Well, they drew blood around 5am this morning; and his level is .10. Grrrr. It has to be below .1, so they are going to draw again this afternoon. If the pharmacy had had his chemo ready on time, he would have cleared. Oh well. It is what it is. We will go home today, just not as early as we wanted to.

David is supposed to have some tests today. He is supposed to have his audio and his echo today. Diane wanted to get those out of the way before Friday. Then on Friday he will have the CT scan and the bone scan. I am not sure about the MRI, Diane was looking into it.

Please pray that Bryon does NOT have jury duty. He is scheduled to have jury duty on Tuesday. If he does have jury duty he might have it all week, in which case I will have to drive to San Francisco. I really don't want to do that. I will do what I have to do, but I would rather Bryon be there. So please pray that he doesn't have jury duty. Thank you.

Well, I will let you know what time we leave. Please pray that we get to go home soon. You all have a good day. God bless you. We love you.

Kristi and the Koury Klan

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SATURDAY, OCTOBER 04, 2008 07:27 AM, PDT

Good morning. I hope everyone is having a good morning. It is beautiful and foggy here in Oakland. I do like the fog~~~I think it is neat. One of the nurses here said that if I lived in it I might not like it; which may be true. But I don't live in it, so I like it.

I am sorry I didn't update yesterday~~~busy day. We got into our room at 10:15am. No, we are not rooming with Chris. But that is because we are in a private room. So is Chris, two doors down from us. So we are all happy. The private room is the best, we just didn't think we would be getting one. Anyway, we got in our room at 10:15 and hydration was started at 10:45. We couldn't believe how smooth and fast everything was going. Chemo starts 6 hours after hydration; so we were looking at it starting at 4:45. We should have know better. Chris got to his room at 11:30 and got his hydration started at 1:15. So that meant his chemo would start at 7:15. When it was 4:00 with no sign of David's chemo being around, we began to know something was amiss. Oh, I had asked if we could have Chuck be our nurse for David's last chemo~~~he gave David his very first chemo. Well, we got Chuck! So we came full circle. Anyway, I had a thought about the chemo being delayed~~Nita said that she has had to wait several hours for Chris' chemo to start because they mix all the chemo at once. So I was thinking they are going to make David wait until Chris' chemo was mixed (the boys are getting the same chemo this time). So Bryon asked Chuck if that was what they were doing. Chuck said, "I called down to the pharmacy and she is under the hood making it now." Well, to make a long story short, David's chemo started at 8:45, 4 hours late!!! We are soooo glad this is over! We are going to file a complaint with the pharmacy. She had all day to make the chemo, she could have made Chris' early, it doesn't expire for a couple of days. But to make the one child wait for the other one is just insane. Our biggest complaint with this hospital is the pharmacy. They have been doing a lot of stuff that there is just no excuse for in my book. Grrrr.

It was busy, also, because it was our Friday night pizza night. So Chris and Nita came to our room and had pizza. And Chris hooked his XBOX up to the TV and the kids played~~~Chris, David, and Rachel. They had fun. Plus we decorated David's room with streamers because it is his last chemo. We took a lot of pictures of the nurses and other significant people to post here. I don't know when I will do that; soon, I hope. So it was a pretty busy day.

Please pray that we get to stay in this room the whole time we are here. There is always the possibility we will be moved from these rooms. The last time we were in a private room we were moved out~~~to the room with a girl. We just hope we can stay here. This is the less stressed David has been in many months. He hates sharing his room with a stranger~~I don't blame him, so do I!! So please just pray that we don't get moved. Thanks.

Well, that is about it for now. You all have a good day. Ashley and Mike~~Happy Birthday! Thanks for stopping by. I will still be updating even though chemo is over. There will still be things happening in David's life~~~~scans and surgeries and such. So stay tuned. God bless you. We love you.

Kristi and the Koury Klan

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THURSDAY, OCTOBER 02, 2008 08:29 PM, PDT By the way; for those of you who don't know, gold is the color for childhood cancer awareness. Take care. God bless.

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THURSDAY, OCTOBER 02, 2008 07:29 PM, CDT

Good evening. The drive to Oakland was beautiful~~~cloudy, windy, a LOT like it was a year ago when we first made this trek. The trees are so beautiful, lots of colors on this drive. Thank you for your prayers that got us here.

We checked into the Family House; boy am I frustrated! We told them 2 weeks ago that there will be 5 of us coming. Bryon told them this morning that there will be 5 of us. So what kind of room did we get? One that sleeps 3!! A full sized bed and a twin! Grrrr. So we have 2 roll-away beds in here~~we are breaking fire codes up one side and down another! Oh well, what can we do? Since our mantra for the last year has been 'it is what it is', we will just deal. Because it is so close to the end, it gets harder and harder to deal with things like this, but we will. God will get us through it. Please pray there is no fire! LOL!

I called the charge nurse this morning to give her a 'heads-up' about wanting to room with Chris~~~she said she will request it. We don't know if it will happen, but we are praying that it will. I requested it, Nita (Chris' mom) requested it, so it is in their hands now. Of course, it is in God's very capable hands, and we hope His will is that we get to room together, but we will see. Even if we don't get a room together right away, they said we could move around so we could be together. We would just rather it be right away, that's all. Please continue to pray that it works out. Thanks.

Well, that is about all for tonight. At least we did get a room at the Family House with internet access, so that is good. And Nita said at least we all love each other, LOL! So I will close for now. I will post tomorrow, and let you know how things went. Again, you know the routine and what to pray about tomorrow. Thank you so much for your prayers and love. God bless you. We love you.

Kristi and the Koury Klan

"Forgiveness is not an emotion, it's a decision." -Franklin P. Adams

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THURSDAY, OCTOBER 02, 2008 08:46 AM, CDT

Good morning. It is a beautiful, cloudy, windy, Fall morning here in Carson City, Nevada.

Please pray for us today as we leave for David's last and final (hopefully) chemo. We are so excited that this is the last one. Of course, we are praying that he will never have to have this poison course through his veins ever again! Please pray that we have a safe trip, and that we can work it out that David and Chris can room together. I have heard from so many people that their child always got a private room~~~if that were only the case for us. But, having the boys room together is the next best thing! It is good to have a roommate you have something in common with. The hospitals handbook says they look for good matches; age, gender, diagnosis; but they really don't. So please continue to pray that we can have David's final chemo be with a roommate he gets along with and he can have a fun and less stressful final chemo. Thanks.

Well, that is about it for now. I am going to pack up my laptop and get it ready to pack in the car. We will probably leave after we have lunch today. Jeremy and Lucy are checking on our animals while we are gone; the girls are going with us this time. So we will have most of our family with us. Speaking of that~~I have been criticized for 'always' saying the 7 of us did this or that. I don't know that I have said it that much. I have said that it is a rare thing when the 7 of us do something; so I get excited about it. I was criticized for including Lucy; after all she isn't really mine. Well, she is married to my son, so she is mine. I consider her my Daughter-In-Love, not just a Daughter-In-Law. Well, maybe this person who said those things will not consider her children's spouses as 'hers', but I consider Lucy mine. I think this person is just flat out jealous of me and my children. I have been told I am just bragging about having 4 children (5 counting Lucy); and that really isn't that many; and people have more than me. Well, duh! I know people who have more than me, so what? Lots of people have the same, less, and more than me. I just happen to have the 4 (5 counting Lucy) best children in the world! If I want to brag about them, I will. I am proud of all my children. They are respectful, productive members of society. God has helped me (and Bryon) to raise these children, and I am proud of them. Am I just supposed to 'forget about' Lucy if we do something as a family, because she 'isn't really mine'? You have got to be kidding me! And I have heard over and over that cancer is a family diagnosis; so therefore I include my family in my posts. I am not going to 'deny' my other children just because someone thinks I am bragging. All I can say to that person is; what do you care if I brag on my kids? Or how many kids I have? So what?!?! If you want to brag on your kids, go ahead. I am ready to listen. Anyway, I guess it takes all kinds of people to make the world go around! And it sometimes takes a tragedy in your life for people to finally get that opportunity to really try to hurt you. Oh well. I just consider the source and move on. Thank you for listening. And thank you, fellow cancer families, for understanding how much we need the rest of our children during this time~~not just the sick child.

Well, gotta get busy. You all have a good day. If we get a good room at the Family House I will post tonight. If not............I will post tomorrow. Please pray the usual prayer; we get a room early, get hydration started, get chemo started, etc. If a room isn't ready early, we are going to go to the clinic across the street and start hydrating; hopefully. Anyway, thank you for your prayers. God bless you. We love you. ((HUGS))

Kristi and the Koury Klan (all 7 of us)

"It really doesn't matter if the person who hurt you deserves to be forgiven. Forgiveness is a gift you give yourself. You have things to do and you want to move on." Unknown

---------------------- TUESDAY, SEPTEMBER 30, 2008 08:43 PM, PDT

Good evening. How is everyone this evening? We are doing ok. I finally have a working computer again~~yay! So now I can update.

Things here are going ok. On Friday Andrea called and said that David's counts had rebounded quite well. The GCSF shots did their job beautifully. As much as we hate them, we are thankful for them. Andrea said that David was free to roam around town, or whatever he wanted to do. We were thankful for that; because Saturday was my birthday and I wanted to go to Apple Hill for my birthday. I wanted all 7 of us to 'get away' for the day and get some apples. Well, it must have been a bad year for apples in Apple Hill. Oh, by the way, we drive past Apple Hill every time we go to Oakland. Anyway, a few of the orchards were already closed for the season; including my main source for apples! And with the orchards that were still open, there were NO Granny Smith apples! I was so bummed. So I didn't bring home my usual 4 bushels of apples~so I am going to have to buy apples at the grocery store to make pies this holiday season. Oh well. I bought 4 bushels last year, and most of them went bad. I bought them just two weeks before David was diagnosed with cancer. And since we were in the hospital on Thanksgiving and Christmas..................they went bad. But it was a fun day anyway.

Andrea called again today; David's counts are great! No more GCSF!!!! Yay! He is a very happy camper. So am I! I have a prayer request. Chris' chemo is delayed, his counts are too low, so he will have chemo on Friday. Please pray that we can work it out that we can be in the same room. The boys spend all day together anyway, it just would make it a LOT easier if we were already in the same room. Please pray that they will put us in the same room. Thanks.

We all got to go to church on Sunday, too. It was so good to be there. Our pastor really spoke to me; again! He has a way of doing that! I want to share what he said. I hope I am saying it right, I took notes through tears. He said that satan doesn't want to hurt us, he wants to hurt God! Now, all parents know that the best way to hurt us is to hurt our children. When our children hurt, we hurt. Boy, do I know that, BIG TIME! I would take David's pain from him in half a heartbeat if I could. Anyway, satan hurts God by hurting His children. God is hurting because we are hurting. BUT, satan is NOT going to win! God will get the ultimate glory in this trial. Satan is just a big loser, and he knows it! So we are just going to laugh in his face! Even if David dies, we will still laugh in satan's face! We can't wait until the day comes when satan is cast into the lake of fire! Won't that be a wonderful day?!?! And we get to watch! Anyway, another thing our pastor said spoke to me, too. I am paraphrasing it a little. He said that it is ok to not understand why these things happen to God's children. It is 'ok' to ask "why"? Jesus hung on that cross and asked God "why"; and Jesus knew why. He knew that God could not look at sin; and Jesus was bearing our sin (ALL of our sin) while he was hanging there. Now, our pastor said, "God momentarily turned away from Jesus so He would NEVER have to turn away from us." Isn't that powerful? God now sees us through the blood of Jesus Christ, so He can see us, and hurt with us, and see us worship Him. I am sooooo glad that God is there. I don't know how we would have gotten through this past year without Him. I hope all that made sense. I sometimes have a hard time putting down into words what is in my head and heart. Thank you for bearing with me and trying to understand what I am saying.

Well, I need to go get David's medicine ready. You all have a good evening, and a good day tomorrow. I hope to do better at updating, now that I have a working 'puter again! It is great to be married to a computer programmer!! I will post again soon. God bless you all. We love you.

Kristi and the Koury Klan

"When you are happy you can forgive a great deal."- Princess Diana

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WEDNESDAY, SEPTEMBER 24, 2008 09:50 AM, PDT

Good morning.

Got a call from Andrea yesterday; so far David's red blood count is ok~~~no blood transfusion yet! Yay! Of course, his ANC is low, but that is to be expected. We have to continue the GCSF shots, bummer. But it is for his own good, so he is a champ about it. He doesn't like them, duh, but he does put up with them. Thank you for your prayers for him in that matter.

His mouth sores are pretty bad right now. He is in quite a bit of pain. He is rinsing quite often, and I am putting the Kanka on them, but we know they have to just run their course. But we feel so bad for him, poor kid. And, his next (and last) chemo is the 'meth' again; and that causes mouth sores, too! GRRRRR. My poor baby. Again, we just can't wait until all this is over! We are just praying that it will be over FOREVER! We are starting to get the 'scanxiety' knowing that the scans are coming up. Oh well. we will try not to worry too much about that now.

Our weather is still gorgeous! Of course, our allergies are pretty bad. The wind just keeps blowing all the pollen around. And the rabbit brush is in full bloom! But we will just put up with it until the first freeze; and that should be happening real soon. So we will handle it until the freeze.

Well, I need to go. You all have a good day today. God bless you. We love you. ((HUGS))

Kristi and the Koury Klan

"When a deep injury is done to us, we never recover until we forgive." -Alan Paton

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SUNDAY, SEPTEMBER 21, 2008 02:37 PM, PDT

Good afternoon. How is everyone this afternoon? It is absolutely beautiful here in Carson City, Nevada! Another beautiful fall day~~high about 73* today. And windy, as usual. It is a rare day that is NOT windy here. So we are enjoying the gorgeous day.

David is feeling ok. I forgot to tell you that he is back on the GCSF shots. I so hate giving him those! I can't wait until I no longer have to do that. I never knew I would have to have a nursing degree just to be a mom to one of my children. One of the nurses at the hospital said it is too bad they don't have 'honorary' nursing degrees! I agree!! Anyway, he was not allowed to go to church today. His counts are too low. I do labs again tomorrow, and we will see if we are looking at another blood transfusion soon. We are anticipating him needing one, but we will see. Otherwise, he is doing ok. His mouth sores are still there, but he is using his mouth rinse, so hopefully the sores will go away soon.

Well, that is about it for now. You all have a good day. God bless you all. We love you. ((HUGS))

Kristi and the Koury Klan



"Not to forgive is to be imprisoned by the past, by old grievances that do not permit life to proceed with new business. Not to forgive is to yield oneself to another's control...to be locked into a sequence of act and response, of outrage and revenge, tit for tat, escalating always. The present is endlessly overwhelmed and devoured by the past. Forgiveness frees the forgiver. It extracts the forgiver from soneone else's nightmare." -Lance Morrow

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THURSDAY, SEPTEMBER 18, 2008 07:34 PM, PDT

Good evening. David started school yesterday, and says it isn't too bad. He is doing well, so far. He is still neaseous, but that is subsiding some. He has more mouth sores, but he is rinsing with the orajel rinse, so hopefully they will go away soon. He is so glad to be home, sleeping in his own bed! Aren't we all.

Our weather has been just beautiful lately. It is definitely fall here! All the trees are changing. I would love to go for a drive and look at all the colors, but with the price of gas......don't see that happening. Oh well, that's life. I am so thankful for the cooler days and cold nights. We have the flannel sheets on our bed now. We hate to get out of bed, the flannel sheets are so cozy. I just bought David some flannel sheets at Costco, he didn't have any. We just got him his bed in the spring of 2007, and so we weren't home enough in the winter of 2007/2008 to bother getting him flannel sheets! But we will be home more this winter, yay!! Anyway, we are all so thankful for the changing season.

Well, that is about all for now. I will post later as things happen. You all take care and have a great evening. God bless you. We love you.

Kristi and the Koury Klan

"Forgiveness does not overlook the deed. It rises above it." -Gobodo-Madikizela

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TUESDAY, SEPTEMBER 16, 2008 11:17 AM, PDT

Good morning. We are home!! Yay!! We didn't get discharged until around 6:30 last night. David had to hydrate for 12 hours after the chemo stopped, then he was feeling pretty nauseous, so Ernesto gave him some zofran. Well, that takes 10 minutes to infuse, so by the time that was done, and he got hep-locked, and we got everything together, it was close to 6:30. So we got home between 10:30 and 11:00 last night. It is so good to be home. We will be home for 2 weeks. Whew! It is always hard to go back, but we will enjoy our time at home.

David is still feeling pretty nauseous today. His mouth sores are almost gone. I can't wait until I don't see my baby feeling so sick all the time. That will be great.

I will be posting pictures soon of David and some of his nurses. I am taking pictures of our favorite nurses, and I will be posting them soon. Then you will be able to put faces to the names I have mentioned. Keep watching!

David got his school books. This quarter he is taking; Geometry, English II, World Geography, Guitar, and Physical Science. He starts tomorrow. He is a little bit excited, but sad because his 'break' wasn't long enough. Well, he is 14; no break would be long enough! Silly kid. So please pray that he is able to keep up this year. He should have an 'easier' year than last year, less surgeries to hold him back. He will have the leg-lengthening surgeries every 3 months or so, but those are a lot easier than the 4 surgeries he had last year! So that is good. Anyway, he shouldn't get behind this year.

Well, I have a LOT of work to do, as usual. you all have a great day. God bless you. We love you.

Kristi and the Koury Klan

"The first step in forgiveness is the willingness to forgive." -Marianne Williamson

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MONDAY, SEPTEMBER 15, 2008 12:43 PM, PDT

Good afternoon. Things here are moving right along. We are still looking at being discharged today, just not sure when. David is still being hydrated and receiving his mesna. We did NOT get a roommate last night, yay! I don't so much mind if we have a roommate; depending on the roommate, I just didn't want to get one in the middle of the night. But we did get one about 10 minutes ago. He is 15, will be 16 in about a week. That is all I know about him. It is good that we are leaving today.

David has one more chemo! We thought this day would never come. If you remember, he was supposed to be done in early July. So when they extended his treatment those 11 weeks, we thought the end would never get here. Every time we saw a light at the end of the tunnel it was always an oncoming train! Well, not this time. Keep in mind, I am just trusting that his scans will come back clear and that will be his last chemo. I know the future might play a different hand than what I am counting on (already has with him having cancer in the first place), but we will cross that bridge when we get to it. We will NOT bleed until we are shot. So, that being said, we are moving forward with the mind set that we will take one day at a time and live it to the fullest! So rejoice with us that we are almost done!

Well, I will post, probably tomorrow, about what time we get out of here and what time we get home. Thanks for your prayers, love, and support. Have a good day. God bless you. We love you.

Kristi and the Koury Klan



"It really doesn't matter if the person who hurt you deserves to be forgiven. Forgiveness is a gift you give yourself. You have things to do and you want to move on." Unknown

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SUNDAY, SEPTEMBER 14, 2008 01:52 PM, CDT

Good afternoon. Chris went home today, much to David's sorrow. They played video games ALL day yesterday. The day went by pretty fast. Our roommate left early afternoon, so Bryon was in a 'private' room all night last night, of course. I have had a few nights like that; but more often than not I get the horrible roommates. Now we have Bradly; an 11-year-old with lymphoma in here for a blood and platelet transfusion. We have 'roomed' with Bradly before. He won't be staying long, so maybe we will have a 'private' room again tonight. We will see.

The doctor came in a little bit ago; we should be discharged around 4:00 tomorrow afternoon. His chemos both end at 6am tomorrow, but then he has to keep hydrating and getting the mesna for 9 hours. Then all the discharge hassle (takes forever), so we should be able to leave here around 4. Please pray that we are able to get out of here. Then we have two weeks at home before we have to come back. But we are coming back for just ONE more chemo! Yay!! When we come back for scans on the 10th David won't be admitted, so that is good. Please pray that we are able to get out of here on time tomorrow. Thanks.

For those of you who read this, and live in the area (even if you don't live in the area but still want to come), we are having an 'end of chemo' party for David on October 12th at First Baptist Church, Minden/Gardnerville. We are inviting any and all who want to come and celebrate with us. We don't know what the future holds, so we are going to celebrate whenever we can. We chose that day (we are praying David will be feeling ok) because that is the one year anniversary of the day we were sent to Oakland Children's Hospital. We have come full circle~~~a VERY long year. So, since I don't know all your physical addresses, consider this your invitation. It will be at 4:00, and in true Baptist tradition, there will be food! So please come if you are able. This is our way, also, of showing our appreciation to you for your support.

David's mouth sores are getting a little better. Nita told me about Orajel mouth rinse; so he has been using that. It stings a LOT when he is rinsing with it; but it is helping to heal the sores. Thanks for your prayers for him.

Well, that is about all from the Koury Cancer Ward. Thank you for checking in on David. Thank you again for your prayers, love, and support. God bless you. We love you.

Kristi and the Koury Klan

"Forgiveness is not an emotion, it's a decision." -Franklin P. Adams

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SATURDAY, SEPTEMBER 13, 2008 10:21 AM, PDT

Good morning. It is a beautiful foggy day here in Oakland. David is still asleep, but there is a reason. We always seem to get the doozie roommates, let me tell you. The one we got yesterday was no exception. He is a 13-year-old with leukemia. He had no parental supervision last night, and it showed! He was on his laptop until past 2am. I asked our nurse at 12:30 if we could have him turn his light off. Well, she said that he was still awake and on his laptop; and I thought, "So?" David and I were trying to sleep! Before I continue with the story, let me backpedal a little bit. David finally got in his room at 4:00pm. We had already ordered the hydration, so we were expecting it to be ready. Yeah, right. It didn't start until almost 6pm. They said it is a 'custom order' and they didn't have it ready. That was excuse #1. Keep in mind, David ALWAYS has the same hydration. The only thing 'custom' about it, is it is without the dextrose; same as ALWAYS!! Then they said that it took so long because the printer was down. That was excuse #2. They couldn't print the label on the bag of fluid. There is always an excuse from the stupid pharmacy. But.....we got hydration started and knew that he could start chemo around 11:45 or so. Well, we know shift change is at 11pm, so we thought chemo could start around midnight. Yeah, right. Remember, they have to pre-medicate David a 1/2 hour before chemo. Well, when Bryon called me at 12:35 or so and I told him our roommates light was STILL on (after I had asked the nurse about turning it out), and he found our chemo had not started yet.............he called the charge nurse. So finally at 1:06 David's nurse gave him the mesna; 1:40 she gave him his pre-meds; and chemo started a little after 2am. RIDICULOUS!! We are soooooo glad this is almost over. I feel sorry for the people who are 'new' to the system here. I am so tired and basically worn out; physically, mentally, emotionally. I want off this roller-coaster! I want my son cured of this monster so I NEVER have to come back here again! This is such a nightmare!! I try to make it as positive for David as I can; we try not to let him see our frustration; but it is hard. So that is the haps on the chemo and the roommate situation.

But David had fun playing with Chris yesterday. Chris is in David's favorite room, and bed, in the hospital. He has a big TV that Chris hooked up his XBOX 360 to; and they played games. It is good for the both of them. It helps pass the time away. We never expected David to find a friend in the hospital. Nita said that Chris has a lot of fun when he is here because he has David to play games with. Whatever makes the hell they are going through a little bit better is fine by me!! They will be coming back next week, and we won't be here, so Chris won't have as much fun. But he will only be here for a couple of days this time. Anyway, I am rambling because I am so tired. Sorry.

Well, you all have a good day. Thanks for checking on David. God bless you. We love you.

Kristi and the Koury Klan

"When you are happy you can forgive a great deal."- Princess Diana

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FRIDAY, SEPTEMBER 12, 2008 09:53 AM, PDT

Good morning. Well, we had a fine trip to Oakland. The room we are in at the Family House does NOT get internet, so I couldn't update yesterday. But we are sitting here in the hospital cafeteria~~~you guessed it, no room at the inn. All the beds are full. So we have no idea when we will be able to get David in and hydration started. He is all registered, though, so that is one step done. It is just frustrating. But~~~~it is what it is. And what it is, is out of our hands! God knows, and maybe He is teaching us something. We have learned to just accept things for what they are; but that doesn't make it easy. Oh well. Please pray that we are able to get into a room very soon. Thanks.

David's mouth sore is causing him a lot of pain right now. He is having trouble eating. We told him that if he drops below the 110 mark the feeding tube goes back in. He is trying really hard to make sure that doesn't happen, but the mouth sores aren't helping. And this chemo he is getting today also causes the mouth sores (mucositis), so he might be doomed for a couple weeks. Then in 3 weeks we come back for his last chemo, it is the methotrexate again~~~major cause of the mouth sores!! Grrrrr. My poor baby. No child should have to go through this! But we will just persevere, as we always have.

I need to make something clear right now. David has one more chemo after this one. I think some people are under the impression that that means he is cured. Nothing could be farther from the truth. Our doctor needs to talk to us about his prognosis. The only thing we have been told so far is, (and I quote) "his prognosis is worse than we first thought." What the 'end of chemo' means is that they have done all they can do for him at this time. He is not 'out of the woods', he is not cured, and he is not out of danger. But we are going to continue to take one step at a time. We will have the scans and watch for the recurrence. He could be 100% cured~~we just don't know at this point. They just have to stop pumping him with this poison at some point, and that is in October. The 'usual' length of time for initial treatment for osteo is 8-9 months; David's was a year. Then it is a case of wait and see if the lung mets appear; or, in David's case, reappear. So I hope I cleared things up for y'all. That is why I have said that we need prayer for the rest of David's life. In other words, don't stop now! Don't ever stop.

Well, I will post later. Hopefully we will get a room SOON!! I won't repeat the reasons, you should know them by now, LOL! You all have a good day, and I will let you know what happens. God bless you. We love you.

Kristi and the Koury Klan

"Forgiveness is primarily for our own sake, so that we no longer carry the burden of resentment. But to forgive does not mean we will allow injustice again." Jack Kornfield

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WEDNESDAY, SEPTEMBER 10, 2008 08:33 PM, PDT

Good evening. I have just one more update for today. Please pray that we have a safe trip to Oakland tomorrow. David doesn't want to go, as usual, but knows he has to. After this next trip we will only have one more! Woo-hoo!!! Please pray that we are able to get a good room. I will post when I can and let you know how things are going. I don't know if I will have internet in the Family House or not, so we will see. Thanks for your prayers. Have a good night. God bless you. We love you.

Kristi and the Koury Klan

"Not to forgive is to be imprisoned by the past, by old grievances that do not permit life to proceed with new business. Not to forgive is to yield oneself to another's control...to be locked into a sequence of act and response, of outrage and revenge, tit for tat, escalating always. The present is endlessly overwhelmed and devoured by the past. Forgiveness frees the forgiver. It extracts the forgiver from someone else's nightmare." -Lance Morrow

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WEDNESDAY, SEPTEMBER 10, 2008 05:32 PM, PDT

Quick update~~~Pray for David. He has the wonderful mouth sores that meth always gives him. And the idea of wax on the brackets to help cushion the sores didn't work. We tried, but it didn't work, unfortunately. Poor kid. *sigh* And the chemo he gets on Friday also gives him mouth sores. And the chemo he gets on Friday is the one that wipes out his bone marrow, so we might be looking at another blood transfusion next week. Again, *sigh* We are so glad this is almost over, at least for now. We are just praying that it will be over forever! Anyway, I just thought I would drop a quick note to update you about David's mouth sores. Have a good evening. Thank you. God bless you all. We love you.

Kristi and the Koury Klan

"He who cannot forgive breaks the bridge over which he himself must pass." -George Herbert

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WEDNESDAY, SEPTEMBER 10, 2008 10:14 AM, PDT

Good morning. David is still asleep, again! Which is good. He said he hasn't been sleeping very well. He said he didn't sleep well Monday night because his ulcer was acting up. Then I remembered that they didn't give him his IV Zantac on Monday morning because we were being discharged. So.....poor guy. He can't take his prilosec when he has 'meth' because it interferes with the clearing of the meth from his system; so they give him IV Zantac twice a day. Anyway, he is back on his prilosec, so all is good.

David got the final piece of his Make-A-Wish last night. His iPhone came in! He was so excited. We spent 2 1/2 hours at Best Buy getting it, getting it all set up, etc. He was pretty tired by the time we left, but he was (is) happy. He got the 16gig 3G iPhone in black. So now his Make-A-Wish is complete. Thank you again Marty and April for everything.

Janet, sorry I missed you at Children's! I read all the updates you post on Nicole. I am glad she is doing well. Hopefully I will see you the next time you are there.

Well, not much else to report at this time. It is a beautiful fall day here. The trees are changing and the weather has gotten cold at night, last night it was 45*. I am so ready for the cold, and the fire in the wood-burning stove, and the smells of winter. Last night I made chicken potato soup and garlic bread for dinner, it was so yummy. I am so ready for the soups, stews, and chili for dinners. Anyway, sorry I got sidetracked. You all have a great day today. God bless you. We love you.

Kristi and the Koury Klan

“You can't undo anything you've already done, but you can face up to it. You can tell the truth. You can seek forgiveness. And then let God do the rest.” Unknown(I know I already posted this one, but it bears repeating. My life is being affected in this area.)

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TUESDAY, SEPTEMBER 09, 2008 08:53 AM, PDT

Good morning. It feels good to be home. David is still sleeping, yay! He doesn't really sleep that good in the hospital~~who does? So he needs the sleep. I forgot to tell you what happened while we were there that was sooooooo funny. David had the hiccups for 2 days! Poor kid. We felt so sorry for him. We have no idea why, but he just kept 'hiccupping' for 2 days. But they are gone now, he is glad. Some of them sounded like they really hurt! It was pretty funny.

I forgot to tell you that we never did get a roommate on Sunday night. There were 2 beds open all night, so that was good. When we left there were 5 open beds! Just wait, when we get there on Friday there won't be ANY beds open for us, and we will have to wait. Oh well, only a couple more times. We really miss Autumn, we didn't get her this last time. We hope we get her as our nurse this next time. But we will see what happens.

When we come on October 3rd for David's last chemo we are praying that we get a good room. Hopefully a big room, or a private room. Both girls are coming for David's final chemo, so we hope we have a room big enough for us. Maybe room 5324 window? I will have to ask John if that would be possible. Oh, John is the charge nurse, during the 7am-3pm shift, when we are there on Fridays. I don't know what he can do about it, we will see.

Well, I will let you know how David is doing later today. Thank you for your love, support, and understanding during this time. God bless your day, and you! We love you.

Kristi and the Koury Klan

"Forgiveness does not change the past, but it does enlarge the future." -Paul Boese

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MONDAY, SEPTEMBER 08, 2008 06:30 PM, PDT

We are home! They let us out. David's meth level was .10. Protocol says he is supposed to be below .1; but the doctor said that #1~he isn't on protocol (remember, he got kicked off study) he can go at .1; and #2~she said he needs to keep on drinking, and they know he is good at drinking when he needs to. Plus, he got plenty of the leukovorin (the 'rescue' drug), and the dr. said that the .1 was kind of an arbitray number to be 'less than' so at .1 is ok. So, anyway, we are home!! Yay! David slept most of the way home; they had given him the ativan right before we left. We made it home in 4 hours. So I thought I would let you know that we are home.

I will post again, I just wanted to get this out so you would know that we are home. Thanks for your prayers. God bless you. We love you.

"He who is devoid of the power to forgive, is devoid of the power to love." -Martin Luther King Jr.

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SUNDAY, SEPTEMBER 07, 2008 08:06 PM, PDT

Good evening. Another update today. Our baby girl roommate was moved down to the 4th floor. They told her mom that the 5th floor is for cancer and hematology patients, so they needed to move Camilla. Our nurse was glad; you don't put a sick child with a fever (101*+) in with a cancer patient. Please continue to pray that David does not get sick. We are so close to being done with chemo. Please pray that he gets to go home tomorrow; we have to come back for more chemo on Thursday. Well, we leave on Thursday and chemo is on Friday. The next chemo he has is Doxorubicin and ifosfamide. The doxo runs for 48 hours straight, and the ifos runs for 4 hours a day for 3 days. So we will be here for 4-5 days; depending on when things get started. He has to hydrate before AND after chemo; so we don't know how long we will be here. Hopefully things will get started early. Hopefully we can get into a room quickly, get the hydration started early, blah, blah, blah. Yep, you know the routine. Anyway, hopefully no other child will be admitted into our room tonight. They have four empty beds, so this shouldn't be the first room they think of. Oh well. *sigh* It is what it is.

Well, that is all I have for tonight. I hope you all have a good evening. I will post tomorrow and let you know if we get to go home tomorrow. They will draw David's blood at 9:30 tonight and again in the morning, so we will see. The meth level at the 24-hour mark was 7.04 (toxic is anything over 5), and the 48-hour mark will be the blood draw at 9:30 tonight. Again, I will let you know what happens. God bless you all. We love you.

Kristi and the Koury Klan

“You can't undo anything you've already done, but you can face up to it. You can tell the truth. You can seek forgiveness. And then let God do the rest.” Unknown

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SUNDAY, SEPTEMBER 07, 2008 11:41 AM, CDT

Good morning. Well, our toddler roommate left yesterday~~~he was a new diagnosis and they like to put them in private rooms, so he is in isolation. But now we have something worse! We have an 11-month-old girl who is sick with a fever. I am so discouraged with this place. They want us to 'follow the rules' they have set up; but they don't follow their own rules. Yes, it is an inconvenience to move kids around, but I don't care. I don't like having to worry about my child getting sick while he is here for chemo. They need to follow their own 'rules' and put like children together~~~same gender, close to the same age, same isolation needs, etc. Oh well. It is out of my hands and control. God knows what David needs, so I have to daily put him in God's hands. I just pray he doesn't get sick because of his roommate.

David and I were talking the other night. Satan picked the wrong kid to do this to. If David lives, David wins (duh). If David dies (good chance of that), David wins. Either way satan is in a lose-lose situation. That is how stupid he is!! I have known people who have had a loved one die and they get angry at God; I pray that I don't do that. God is NOT the author of death; we need to be angry at the right source! It sure isn't God! We do live in a fallen world~~but that doesn't make all this any easier. Like I have said before, I know all the right answers. I know all the 'Sunday School' answers. Those answers don't help when you are looking at the possibility of watching your child die. Please continue to pray that we will be able to accept whatever God has planned for David. I do not want to let God down by my attitude. I feel that I have grown closer to God through this, and I don't want to go back.

Well, Chris just left, so they are moving the baby girl out of our room, yay!! We had the chance to move, but it just isn't worth it to move for one day. We have to pack a lot of stuff, and we are already 'moved in' to this room. So they will be moving her, soon I hope.

Well, I will close for now. Please continue to remember us in your prayers. Thank you. God bless you. We love you.

Kristi and the Koury Klan

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SATURDAY, SEPTEMBER 06, 2008 11:26 AM, PDT

This background is in honor of Football season starting. Yay! Do I like football? It is ok. But it signifies to me the start of my favorite season, Fall, so I like to see football begin!!

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SATURDAY, SEPTEMBER 06, 2008 10:00 AM, PDT

Good morning. Sorry I didn't update last night~~busy night. We finally got to our room around 2:30. Hydration started at 3:00; yay!! So we told Dr. Raphael that we wanted the chemo started on time, we are sick and tired of waiting around. They all said no problem. Our nurse, Janae (I am not sure how she spells her name) was on the ball, and did a great job. She told us around 8 that the chemo was 'here' and ready, she was just waiting on the pre-chemo meds. David is given decadron, zofran, and ativan before chemo starts. Well, the wonderful (ha-ha) pharmacy didn't send up the decadron. The nurses are almost as disgusted with the pharmacy as we are!! So, to make a long story short, chemo started at 9:30. I know, you probably think that isn't too bad. Well, you are partly right. It isn't TOO bad, but there is absolutely NO excuse for it to be late at all!! They sent up the chemo, send up the pre-meds! Chris is here, and his chemo was 3 hours late! Nita is pretty disgusted with the pharmacy, too. I won't go into detail, it would take too long, but we are just praying that David's bladder and kidneys are ok. The pharmacy will be responsible (partly) if they aren't! Anyway, otherwise we had a good evening. When we are here the same time Chris is here we have "Friday Night Pizza Night". We order pizza for delivery, and we go to one of the rooms (last night was Chris' room) and we have a 'party'! The boys played with Chris' Wii on his portable DVD player (yeah, we gave him that idea), and we chatted. The excitement for the evening was there was an earthquake! Not real big, 4.0, but the building swayed nicely. That was David's first earthquake! So that was exciting.

David is doing ok. Right now he is still sleeping. He did have another echo yesterday; the next chemo he is going to have is extremely hard on the heart, so they wanted to make sure his was ok before they give him the chemo next week. I guess it is ok, we don't know yet. The tech showed us on the sonogram where his broviac is going into his heart. It was kinda cool, but creepy. But David is feeling ok, so far. This chemo (meth) doesn't usually make him sick, just gives him the mouth sores. But I have orthodontic wax to put on his braces to cushion the sores when he gets them, so hopefully he won't be in too much mouth pain this time.

David's roommate is a cute little toddler. The only problem I have with him is he has a horrible 'wet' cough. And the poor child coughs all day and night. I just hope and pray that David doesn't get sick.

Well, that is about all for now. I will try to update if anything should happen. You all have a good day today. Please pray that we will be able to go home on Monday. Thanks. And thank you for visiting David's site and for loving him. God bless you. We love you.

Kristi and the Koury Klan ((HUGS))

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FRIDAY, SEPTEMBER 05, 2008 12:25 PM, PDT Good afternoon. Are we in our room yet? No, we are NOT! This is just so frustrating! We want to get in our room, get the hydration started, get the chemo going, so we can go home! Yeah, you know the routine. The way it is going, we won't be able to go home until Tuesday; and we have to turn around and do it all over again next week. We couldn't be happier that this is coming to an end! Please continue top pray that we NEVER have to come back and do this again! This sucks so bad. David just gets more and more depressed and stressed out when this kind of stuff happens. Grrrr! We need to be in our room! Ok. I am done venting.

Stay tuned. I will let you know what happens when it happens. Pray we get in our room soon. David is already registered and admitted; just doesn't have a room. Well, again, stay tuned. God bless you all. We love you. ((HUGS))

Kristi and the Koury Klan

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THURSDAY, SEPTEMBER 04, 2008 10:07 PM, PDT

Good evening. We made it to Oakland safely. It was a long hot drive~~thank God for air conditioning!! Bryon's windshield developed a crack in it on the way. Yeah, these trips are very hard on our vehicles! We are so glad they are coming to an end soon. We had a little road construction, but not too much. The traffic was quite heavy in places; but that was at 5:30, so that makes sense. So we made it here safely.David is not looking forward to tomorrow, but at the same time he wants to get it over with. He knows that he only has two more after this one, so he is kinda anxious to get this one started and over with. Please pray that we get into our room early, get the hydration started early, get the chemo started......yeah, you know the drill. We want to be able to come home on Monday so we will have 2 full days at home. Then we come back for his last doxorubicin and ifosfamide. Connie told us it is the ifos that attacks his bone marrow so hard; so we might be looking at another blood transfusion in a couple weeks. But we will cross that bridge if and when we get to it. For now we are just praying that we get a good room with a good window and a good roommate. I have heard from other people that they always have private rooms for their children's chemo~~~~I wish!! So we are just praying for a good room.Well, that is about all for now. You all have a good night tonight. I will update tomorrow and let you know how everything went. Connie said that she put David's file on the nurse's desk and told them David is coming in, so they should have things ready (in a perfect world). Again, have a good night. God bless you all. We love you. Kristi and the Koury Klan

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WEDNESDAY, SEPTEMBER 03, 2008 06:34 PM, PDT

Good evening. Please pray for another CaringBridge family we have been following. Their precious baby girl died this evening. Not from osteo, but from another disease. She fought her battle her whole life; just 22 short months. Please remember her family in your prayers. Besides her parents she has 1 brother and 2 sisters. And hold your children extra close tonight. Thanks. God bless you all. We love you.

Kristi and the Koury Klan

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WEDNESDAY, SEPTEMBER 03, 2008 08:40 AM, PDT

Good morning.

Well, we had a great camping trip! Yes, we camped in our front yard. It was fun. The weather was perfect on Sunday and Monday~~a little too warm on Saturday. But it was still a lot of fun. Jeremy and Lucy came by on Sunday and Monday, they just didn't stay in the trailer with us. We cooked in the trailer, ate in the trailer, and slept in the trailer. Again, it was a LOT of fun.

We have recently learned of another child losing her battle with osteosarcoma. She is 11 years old, and had 10 days left to live. I am not sure if she has died yet or not~~~haven't been on the 'puter for awhile. Please remember her family in your prayers. And please continue to keep David in your prayers, always. David is doing ok right now. Not wanting to leave tomorrow for Oakland, but none of us do. But he knows that after this chemo (meth, again), he only has 2 more trips to Oakland for chemo. Again, we are praying that it will be the last chemo FOREVER!! Please pray for us as we leave tomorrow for Oakland. Pray that we have a safe trip. Thanks.

We had an answer to prayer. Bryon was called to jury duty. He was scheduled to appear on Sept. 15. Well, that would have meant I would be doing the chemo thing alone. I can do it, but that isn't the point. David does NOT like to be left alone in the hospital. I would have had to leave him alone so I could shower; and I wasn't comfortable with that. Well, Bryon called the sheriffs office and the case was cancelled~~~Praise God! So David won't have to be stressed out and left alone in the hospital; yeah!

Well, that is all for now. I will post if anything happens. Have a great day! God bless you. We love you.

Kristi and the Koury Klan

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THURSDAY, AUGUST 28, 2008 08:40 AM, PDT

Well, the blood transfusion went well. David did NOT need platelets this time, woo-hoo! So we were there from 9am until 4pm. David got 2 units of red blood cells. They said he should be feeling better by Friday.

But.....no camping trip. Connie said that if he were to get a tiny scratch, scratch a bug bite, or something like that he could get a bad infection. You see, she said he has NO immunity right now, and we would be too far away from any medical help if he were to get an infection. I don't really understand, because it isn't like the infection would happen instantly, but we are following her advice. So, we just put the trailer on the front grass and we are 'camping' in the front yard. It won't be the same, but David said it will still be fun. He is so cute. He said that nobody should be allowed to go in the house the whole weekend. We will see about that. LOL! So, please pray that we still have a fun weekend. David is pretty disappointed, but he is a tough kid. He has dealt with a LOT of disappointments the past year, we just hate to add one more. But we will go camping as soon as we can. We will make it up to him.

Well, that is the news for now. You all have a good day. God bless you all. We love you.

Kristi and the Koury Klan

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TUESDAY, AUGUST 26, 2008 02:10 PM, PDT

Well, it is written in stone. David's last chemo is October 3rd! They nixed the last chemo on October 10th because of an 'extra' one he had before they changed his treatments. So, we are close to being done! Yay! David will have all his scans on October 10th. Please pray that those scans come back clear! We go to San Francisco on October 9th, and David will be getting an xray then, too. So we are praying that all the tests and scans come back NED (No Evidence of Disease). Please join us in that prayer. It has been a long year. We are glad that it is almost over.David does need a blood transfusion. We will be going to Reno tomorrow morning. Connie wants us there between 8:30 and 9:00. I am sure we will be there closer to 8:30. David is feeling rather tired, dizzy, and light-headed. His ANC is, at most, 80. So, he is not feeling that great right now. But he will get his blood tomorrow, and by Friday he will be feeling better. I am glad he will be feeling better by Friday because we are going camping!! Woo-Hoo! We need to get away for a weekend and forget about all this junk we are going through. The kids have wanted to go camping all summer, but we aren't home on the weekends much. So, since it is Labor Day, and all 5 state employees in our family have it off, we are going camping. David doesn't have to worry about germs camping~~he is in the beautiful 'wilderness' that God created. We just need some time away. We can't wait.Well, that is about it for now. Please pray that David's transfusion goes as good as the last one. I am not sure if he need platelets again or not; I will post tomorrow and let you know. Thank you for your prayers. Have a good afternoon. God bless you all. We love you.Kristi and the Koury Klan

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TUESDAY, AUGUST 26, 2008 08:12 AM, PDT

There comes a point in your life when you realize;

who matters,

who never did,

who won't anymore...

and who always will.

So, don't worry about people from your past,

there's a reason why they didn't make it to your future.

I read this a while ago, and I thought it to be so true. It really spoke to me in my endeavor to forget the past. God gives us each day fresh and new, and He expects us to live each day for Him, and to it's fullest. He does not expect us to dwell in the past; but He does expect us to learn from our past. We are doomed to repeat the past if we don't learn from it. Yes, we do 'reap what we sow', but that is how we learn and then go forward. We can't afford to waste our time in the past; we have to live each day as if it were our last; because it could be! David might never make it to adulthood, so we need to make his life the best possible. And that means leaving the past where it belongs~~~out of the present and the potential future. Well, that is it for now. I will post later; we are looking at another possible blood transfusion for David. Keep checking in. Thank you for your love, prayers, and support. God bless your day. We love you.

Kristi and the Koury Klan



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SUNDAY, AUGUST 24, 2008 06:45 AM, PDT

Ok, Bryon said it better than I could. Here is what happened yesterday..........

Today David had his Make-A-Wish. For the last few days, the anticipation had been growing and his excitement level was higher than we have seen in a very long time.The Limo came and picked us up at about 10am. We went to Game Stop first. Game Stop gave David a $400 gift card which was on top of the Make-A-Wish money! He used it for game controllers and a whole bunch of games.We went to Best Buy after that where David bought a gaming laptop (fast dual core processor, 4gb memory, 200 gb hd, 512 mb video ram, surround sound). He bought several games for the laptop there also. He wanted to get a 16gb iPhone, but the AT&T store was sold out and Best Buy can't sell them until sometime in Sept. Best Buy worked it out with Make-A-Wish to have David buy a gift card and then use that for the phone in Sept. David will get his phone, just not today. He got a printer to go along with his laptop also.David had about $80 left to spend, so we went to WalMart. WalMart gave David a $100 gift card. He spent about $150 on more games and has the remainder on the card.For lunch, David wanted to go to Locals BBQ. They served a great lunch, as always, and also gave David a $50 gift certificate!After lunch we came home where David immediately went upstairs to play his games. He wanted me to setup his laptop for him. When the laptop started up it immediately went into recovery mode. After it recovered, it rebooted and went back into recovery mode. It did this about 5 times. We took it back to Best Buy and brought another one home. This one did the exact same thing. Apparently Toshiba is having some problems with their cloning software! We took the second one back and they brought out a third. This time we made sure it worked before taking it home.The Nevada Appeal sent a reporter and photographer along for the first part of the trip. Apparently in tomorrow's Sunday edition will be the story. You should be able to find it at www.nevadaappeal.com tomorrow (look for 'a day to smile').David had a really great day today and we are very grateful to Make-A-Wish, Game Stop, Best Buy, WalMart, and Locals for making David's day everything he hoped it would be.

Thank you for your prayers and support. We love you all!-Bryon

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FRIDAY, AUGUST 22, 2008 10:41 AM, PDT

Well, we are home. I guess you figured that out, huh? Sorry I haven't updated, it is always crazy when we first get home. Yesterday I had to draw David's blood, run it to the lab, wait for the delivery of my supplies to care for his broviac, do lots of laundry (I am still doing it!), etc. So it was a busy day. Then Parker and his parents came by last night, it was good to see him. We miss him. His baby sister is getting big! So it was a busy day.

Diane said it is not written in stone, but we are planning on October 3rd being David's last chemo! YAY! Then he has an appointment with Dr. O'Donnell in San Francisco on October 9th, and Diane is planning on having all David's scans on October 10th. He will have to have a bone scan, CT scan, echo, hearing test, and kidney scan. I am going to ask about a PET scan also. We aren't sure how accurate they are with osteo, but we are going to ask just the same. Please pray that all the scans come back clean and clear. After the scans come back clean, we can schedule the surgery to remove David's broviac! I am VERY excited for that! It is so unnatural to see something hanging out of your child's chest! It is so good to see the light at the end of this VERY long tunnel we have been in.

David is feeling ok right now. I am back to giving him the GCSF shots, yuck! I hate doing it. He doesn't care too much for it, either. But this last chemo is the one that totally knocks his counts out! Please pray that his body recovers quickly.

Tomorrow is David's Make-A-Wish! He is so excited! He cannot wait! It is great to see him so excited. His life has been a living hell the past year, so it is good to see him happy and excited.

Well, that is about it for now. You all have a great day. Thank you for checking in on David. And thank you for being there for him and the rest of us. God bless you. We love you.

Kristi and the Koury Klan

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TUESDAY, AUGUST 19, 2008 07:52 PM, PDT

Good evening. David is on his last chemo for this trip. We are hoping to go home tomorrow. So far they said we can, so we are planning on it.

We had a talk with Diane today, and she said that David's last chemo is possibly October 3rd, not the 10th like we originally thought. That is because his last chemo is Methotrexate, and he had an 'extra' Meth back after his limb-salvage surgery. So it looks like that one is taking the place of the one on October 10th. Something like that. We still don't know for sure, she will let us know. That would be soooo wonderful if David finished earlier than we thought. Of course, we are wanting to make sure that he has all the chemo he needs to kill the cancer in his body without giving him too much!! It is a balancing act! So, please pray that Diane is right and we get to finish early. We want this behind us sooooo badly!

David did handle this chemo ok. He had his last Cisplatin a couple chemo's ago, and this was his last VP-16 (etoposide). He was given Ifosfamide this time, too, and he has Ifosfamide again the middle of September~~but it is a 3 day infusion, not 5 day like this one was. Like I said before, this was his last long chemo. The next one is Meth, then doxorubicin and ifosfamide, then Meth again. Then he should be done! Yay! We can't wait. But he is doing ok with this one. He gets some nausea, but not too much. His mouth sore is gone! Yay! That is so miserable for him. So we are happy that another chemo is almost done!

Well, that is all I can think of for now. Pray that we have a good night tonight. Bryon is at Family House and I am here. Pray for Bryon, he has been up since yesterday morning. It is a long convoluted story, so I won't bore you with it. But it has nothing to do with David, or our roommates. Please pray we have a safe trip home tomorrow. Thanks. You all have a good evening. Thank you for checking in on David. God bless you. We love you. ((HUGS))

Kristi and the Koury Klan

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MONDAY, AUGUST 18, 2008 02:00 PM, PDT

Good afternoon. We had more sad news. Another girl died yesterday (Sunday) from Osteo. She was the one I mentioned quite a while ago who relapsed after 16 years!! See, David will NEVER be out of the woods with this. We just pray that he will be cured.

David is done with day 3! He only has two more days of this chemo; the last long chemo!!! Oh, by the way, his roommate is 7 and very cute. He is a good boy, and his family is nice, too. They speak some English, the little boy (Ivan) speaks both. He is so cute; he will be talking to his mom, 1/2 in English and 1/2 in Spanish! He is a cute kid. Much better than Cody!!! But we are thanking God that we got this room with a good roommate.

Now as far as the PCA's are concerned~~~we had a doozie of one last night! PCA stands for Patient Care Assistant. They are the ones that come in and take vital signs during the night. Well, this one came in at 1:00 and turned the light on. Grrrr. Then, he talks loud. Then he kept trying to wake David up (that can be impossible when he is drugged up with the ativan). He kept telling David to give him his hand so he could take his blood pressure. Finally, I said, 'just take it!' He said, 'just take it?' And I said, 'just do it!' So he lifted David's arm up and put the cuff on. DUH!! Then at 4:30 he came in, and said (rather loudly) 'good morning guys' and turned on the light, again! David's nurse came in and told him to turn off the light!! So, I have been up since 4:30; and up every hour before that with David having to pee! The nurse, Amy, apologized over and over for the PCA; but I told her it wasn't her fault. Another wonderful experience in the life of the Koury Cancer ward! Oh well. At least David gets to sleep through all that crap! The ativan pretty much kicks his butt. He doesn't even remember getting up to pee. Well, ativan is also a mild amnesiac. Anyway, that was our night last night. Oh well, we will get through this chapter in our lives.

Well, that is about all that is happening right now. I will be posting (don't know when) and sharing with you all the things I have learned through this experience. We are so glad it is almost over. Please continue to pray for us as we wind down these chemos. Please pray that he never has a recurrence. And please pray that I can find some people who need child care after October; we really need the money!! Thank you for your prayers. God bless you. We love you. ((HUGS))

Kristi and the Koury Klan

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SUNDAY, AUGUST 17, 2008 03:06 PM, PDT

Good Sunday afternoon. It is another beautiful day here in Oakland. The fog finally lifted around 1:00pm, and it is a nice day. I like the fog, it is pretty.

We are in a different room! Yay! We got moved around 8:45 last night. I talked to one of the nurses (one of our favorites) and she talked to the charge nurse (and the resident Dr.) and we got moved. The nurse I talked to knew exactly who I was talking about, and why we were so upset. Apparently, this child has a reputation in the hospital. I don't know. It seems like they should be able to say something to the mother about him when he is in a shared room. Anyway, bottom line is we moved to a different room. Actually, it is the room we were in when we first met Chris and Nita. We are still by the window, and our roommate is around 8 or 9, I think. But at least he is quiet. Bryon said he could hear our old roommate screaming last night~through the closed doors! But at least we are now in a different room, and David is doing better. The patient advocate is pretty useless, I need to talk to the nurse manager. I don't know that it will help any, but I just have to remember that we only have 2 more months of this. Nita said she has been dealing with this for 'only' 6 months; she doesn't know how we have handled it for 10 months! I told her it doesn't matter, 6 months is still a long time to have been dealing with it. Just because we have been dealing with it a lot longer doesn't make it any easier for her! It still sucks!! We are both glad that we will be done in October. She comes in just a couple days before we do, for the same last chemo! We are going to have an 'end of chemo' party together for our boys! It will be fun! Then we will probably see each other on 'scan day'; and maybe the boys will have their broviacs removed the same day! Who knows. We will see.

David is doing better, like I said, now that we are in a quieter room. He is a rather quiet child, and he needs the peace when he is here. I have said many times over the past 10 months that this really stresses David out. That is another reason why we need a window bed; David is sitting in the window as I write this. He needs to be able to see outside; and if you are in the 'door' bed, you can't see out the window. So David's spirits are better now that we changed rooms. David is doing ok with the chemo. Remember, the etoposide (VP-16) is the one where they have to take David's blood pressure every 15 minutes the entire hour. So scary! But he is doing ok, no nausea or vomiting. The drugs they give him work really well for him. Sometimes he gets a little 'breakthrough' nausea, but so far not this time. So he is doing ok. We are almost halfway through this treatment. Today is day 3, then he only has 2 more nights of chemo. We are hoping to go home on Wednesday, please pray that we do. It will all depend on how long after the chemo ends David has to hydrate. Our nurse said that hopefully the overnight hydrating will be enough. David finishes this treatment at 11:15 or so Tuesday night. Please pray we can go home on Wednesday!!

We didn't get to have Autumn this time; sad. She is in 5 South, and we are in 5 East. But she did come by and say hi today, it was great to see her. We really wish that we could have her, or Anne, or Chuck. We did get to see Ernesto last night, that was good. All of our favorite nurses are either in south or they are training. It is so sad. *sigh* But that is ok, we know we are in good hands.

Well, I will close for now. Have a good rest of your day, and have a good night. I am with David tonight. Thank you for your prayers. God bless you all. We love you.Kristi and the Koury Klan

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SATURDAY, AUGUST 16, 2008 09:37 AM, PDT

Good morning. I am sorry I haven't updated yet, it has been a nightmare! We got our room at 9am Friday and hydration started at 12:15. David's urine needed to be less than 10.10; and his already was at 10.05. Our nurse told us that we could get chemo started at 4:15 because he was ready. Well, the wonderful pharmacy said he can't start until 6:00. Why, who knows! So he got started at 6:15 with the etoposide; which runs for one hour a day for 5 days. Then at 7:15 he started the ifosfamide which runs for 4 hours a day for 5 days. So day one is over. David had a great idea to hook his gamecube up to his portable DVD player and bring that to the hospital. It works! So last night we went to Chris' room and the boys played games while Bryon, Nita and I chatted. It was really fun for the boys; made the time go faster. Chris might be discharged today, but hopefully the boys still might be able to play some before he leaves. He comes back on Tuesday, and we will still be here, so maybe they can play then, too.

Now, the reason this is a nightmare. We have the roommate from hell!!! He is a 4-year-old BRAT! I want to feel sorry for his mom, but I just can't! She created this monster! He is ALWAYS yelling; at her, at the nurses, at the pca's, at everybody. He wants to go to the playroom, and if it is closed he tells his mom it is her fault! Trust me, this kid is a monster. Every time he had his vitals taken last night; every hour; he screamed (I was with David last night). He didn't like the blood pressure cuff; he didn't want his temp taken; you name it. If he was even a teeny tiny bit awake he was screaming! Not screaming 'words', just screaming. I have a splitting headache from listening to him, and from lack of sleep! I am fed up with having to room with toddlers!!! (They could have put us with Chris!) He never says 'mommy' in a nice tone of voice; it is always 'mommy!' in a very demanding voice. His voice is very raspy; we figure it is from all the screaming and yelling he does! He probably ruined his vocal chords! He never says anything kindly. He is just a very miserable bit of humanity. I want to be compassionate, but it is very difficult. Please pray for us. Bryon will be with David tonight. I don't know how long this child will be here. What he needs is some good old-fashioned discipline! Anyway, please pray for us to get through this time! I am going to request to the nurse manager that she NEVER puts us with a toddler again. They say they put roommates of like age together; yeah, right! Chris (he's 16) is with a 9-year-old, we are with a 4-year-old, etc. Sorry, I needed to vent. All you folks out there with children with life-threatening illnesses who have spent time in the hospital know where I am coming from. Thanks for your support and your prayers.

Well, David is doing ok, physically, with this chemo; so far. He has a pretty bad mouth sore from the meth he had last week so he isn't eating very good, but that will be ok. Once the sore goes away he will be able to eat better. I am putting Kanka on it before he eats, but the sore is pretty bad. He is doing his best to take one day at a time and get through this. The roommate situation sucks, and he is a little stressed out, but we are trying not to let our frustration and anger show to him. Please continue to pray that he gets through this chemo with as few side effects as possible. Thanks.

Well, that is all for now. We really do covet your prayers; and we appreciate them. Thanks for checking in on David. Thank you for your prayers, love, and support to us during this horrible time in our lives. Have a good day. God bless you. We love you. ((HUGS))

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THURSDAY, AUGUST 14, 2008 07:16 AM, PDT

Good morning. We are getting ready to go to Oakland. Well, actually Bryon is still asleep, and I just wanted to update real quick before I need to shut down and pack up my laptop.

Please pray that we have a safe trip today. Also, please pray that we get a good room, again. We need the window bed, so please pray that we get one without any trouble. Thanks.

Thank you for your prayers for the physical problem I was having; it is all gone now. I had a mild case of Bell's Palsy. But now, praise God, it is all gone.

We need prayer for our finances, again. Or is it still? Anyway, I got a statement from our insurance company that they denied some of David's hospital bill~~~they said his "pre-authorization limit was exceeded". Give me a break!! So now we are going to have to fight; they say we owe $23,500! Are they kidding me? They can't get blood out of a turnip! I don't want to have to file medical bankruptcy! They should know how many times he will be admitted; he has cancer! Can I help it if he had extra surgeries and extra chemos? Whatever. Just pray for us. As if our stress level isn't high enough already! Thanks for your prayers.

David is doing ok, just doesn't want to leave today. I don't blame him. But this is his last long chemo. The other ones are 4 days tops; this one is 6 days. Please pray that the hydration gets started early, and then the chemo can get started, otherwise this could end up being 7 days long. Please pray that they don't 'mess around' and get his treatment started! Thanks.

Well, I will close for now. I hope we get a room at the Family House that gets internet, then I will update tonight. Otherwise, I will update when we get to the hospital. Thanks for checking in on David. Thank you for your prayers. God bless you. We love you.

Kristi and the Koury Klan

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TUESDAY, AUGUST 12, 2008 04:26 PM, PDT

We are home. Woo-Hoo! Our own beds for 3 nights! Let me tell you; there are a LOT of things I took for granted. Like my own bed, my own cooking, my own schedule, money from my job, etc. I could go on and on, but I won't bore you. We made it home around 4:00 yesterday. Autumn said she hopes to have us when we come back, she is going to try anyway.

I had to take Bryon's car in today, the center air-conditioning vents weren't working. So David and I made the trip to Reno. We weren't sure how long it was going to take to fix, but they gave us a loaner car to drive while they were fixing Bryon's car. So David and I went to Toys R Us (David had a $50 gift card) and he bought a game for his Wii. Then we went to REI sporting goods store and got David a walking stick/cane. So now he can use that instead of his crutches. Nita told us that is where she got Chris' so we got David one. We went to Walmart and David played in the arcade for a little while until the car was ready. It didn't take that long to get it fixed. David was happy, he wanted to get home and play his new game.

He is counting the days until his Make-A-Wish shopping spree. It is on August 23, and he cannot wait! He wants a new laptop, and so that is what he will buy. And of course he will also buy some more games. He is just constantly saying, "I can't wait until my Make-A-Wish". We can't wait either, LOL. But it will get here faster than we think. This year is screaming by; and it is a bittersweet thing. We can't wait until things are back to 'normal' around here.

David now has to take calcium pills to build his bones up. We bought him the Viactiv chews. He doesn't mind them. It is better that another pill to swallow. He already takes too many pills every day. And someday we will be adding the vitamin B-12 to the mix. Oh well, whatever it takes to get him healthy! His bones right now are rather thin, so the calcium should help. He drinks a fair amount of milk every day, too. But we are doing everything we can to help him.

He is still feeling rather nauseous. He isn't eating that well, but that is ok. He is still holding his own, so we are happy. I can't wait until he never has to feel like this again. I can't wait until he has no more broviac to worry about. I can't wait until his hair, eyebrows, and eyelashes grow back. I can't wait until he no longer has dark circles around his eyes. Sorry, but those of you who are in my shoes know EXACTLY what I am talking about. THIS SUCKS!! We have to leave the day after tomorrow to go back to our 'home away from home' and we really don't want to go. Bryon said he always wanted a second home~~~didn't know it would be Oakland Children's Hospital! *sigh*

Well, I need to go check on my chicken. I am making chunky chicken potato soup for dinner, and the chicken should be just about done. I will update later. Please continue to pray for David. Please pray that he feels better soon. He will barely recover in time for the next treatment! Poor kid. Thank you for checking in on him. Thank you for your love, prayers, and support. God bless you all. We love you.

Lots of love~~Kristi and the Koury Klan

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MONDAY, AUGUST 11, 2008 09:24 AM, PDT

We are going home!! David cleared! His levels are .08!! Yay! The bittersweet thing is, we got Autumn today! I was just saying I wanted her, and we got her! But only for a few hours. Oh well, I will take what I can get. But hopefully we will have her this coming weekend when we come back! Please pray that we get her, we love her.

Well, that is all for now, gotta pack up all the stuff. Thanks for checking in on David. Thanks for your love for him. I will post later. God bless you all. We love you.

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MONDAY, AUGUST 11, 2008 07:15 AM, PDT

Good morning. This has been a rather uneventful chemo. He did seem to have some diarrhea with this chemo, but it happened last time, too. Nita said Chris got it, too. These poor kids! If it isn't one thing, it's another! So now we are waiting for David to flush the 'meth' out of his system. At the 24-hour mark the therapeutic level of meth still in him should be less that 5.0~~toxic level is anything above 5.0. His was 5.48. Close, but still toxic. So he drank a LOT of propel fitness water. At the 34-hour mark his was .84 (we are getting there). At the 48-hour mark the therapeutic level is less than 0.5~~toxic level is anything above 0.5. His was .32! We are definitely on the down side. As I write this the nurse is drawing his blood to check his level at the 60-hour mark (there are no numbers for that), so we will find out in a few hours what it is now. At the 72-hour mark it should be less that 0.1. We are hoping for less than 0.1 at the blood draw she is doing now; but we will see. The closer it gets to 0.1 the harder it is to get rid of it. But he is plugging along. Some nausea, but otherwise he is doing ok. Please pray that he doesn't get mouth sores from this~~he usually does. But that doesn't mean he has to this time!! I will post when I find out his levels. We like to find out early~~we have that long drive ahead of us. Bryon said that no matter what time we find out, we are going home (if David's clears). He is driving, so it is up to him. I stayed with David last night, so Bryon got to sleep at the Family House. But we still don't sleep that well there. But he is still willing to drive the 4+ hours home even if we get discharged at night. It will be good to be home. We have to come back on Friday~~for the long chemo this time. That is the 6 day chemo. Grrr. Whatever it takes to cure my son!

Please continue to pray for my son's healing. There is a 99% recurrence rate with this cancer. Please pray that David falls into the 1% that is cured! Thank you.

Well, I will close for now. We hope to have Autumn as our nurse again sometime. We really miss her. The nurses we have had this time have been ok, but we still miss our favorite ones. Oh, David still has that BMT dressing on. Pam Jones (the wound care specialist) should be by today to see if she has thought of anything else we can do. Please pray that we can figure something out. This is so frustrating!! Thank you for your prayers. Have a good day, and I will let you know what I find out. Thanks for checking in on David. God bless you. We love you. ((HUGS))

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FRIDAY, AUGUST 08, 2008 10:49 PM, PDT

Good evening. How is everyone this evening? We are doing ok. The drive to Oakland was uneventful. I am sorry I didn't update yesterday, the room we are in at the Family House does not get internet access. We stopped at a place in Fairfield called 'Green Bean Coffee' and had a coffee. It was a nice break. David had to pee, so we stopped and had some coffee and relaxed for awhile. So it was a nice drive.

We got in our room around 9:30 or so this morning. It is an isolation room~~yeah, private. We don't know how long we will be in this room, but hopefully we won't have to move. We don't care anymore what room we are in as long as we have a window~~David is in the window as I write this. So it is all good right now.

David got his hydration started at 1:00pm and chemo started at 7pm!! Yay! He will be done around 11pm or so. Finally! Chemo starting on time! We aren't sure how to handle things going right. Praise God that it is going so smoothly, so far.

We had the xray of David's ankle. The preliminary report is he has osteopenia~~pre-curser to osteoperosis. The doctor is going to talk to the radiologist in the morning and then let us know what we need to do about it. The bone is very weak and thin; from chemo and from lack of use. So we will have more information tomorrow.

Chris and Nita are here, too. They will probably leave tomorrow, Chris had the 'Meth' also. He should clear by tomorrow, so they will be going home to come back Tuesday. David should clear Monday for us to come back on Friday. Chris is walking with a cane and he looks so good. But his weight has dropped too low (been there, done that), so he will be getting a feeding tube next week (been there, done that). Poor kid. We are praying it helps him as much as it did David. Connie said that David is a poster child for feeding tubes. He is 'down' to 114 pounds, but at least he is holding his own. We have told him that if he gets below 110 the tube goes back in. So we are praying he doesn't drop down that low.

Well, I need to go. You all have a great night. Sleep well in your own beds~~wish we were! Please pray that David clears this poison out quickly, just not too quickly. Thank you for your prayers. Thank you for checking in on David. God bless you. We love you.

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WEDNESDAY, AUGUST 06, 2008 10:07 PM, PDT

Good evening. I hope everyone is having a good evening. We are having a good evening here. Things are going well here. David is dreading tomorrow~~wow those 2 weeks went by FAST! We aren't looking forward to it either; we aren't looking forward to no sleep for the next 2 weeks! Oh well, we have managed it for 10 months so far, we can do it for another 6 treatments! Please continue to pray for us as we finish up the last of these treatments. Thank you so much for your prayers thus far. David is doing well overall. We just can't wait until this whole nightmare is over with. We can't wait until we no longer have to watch our son go through what he is going through. We need to have his ankle x-rayed when we get there; it is still hurting him very badly. From all of our research, he could have a stress fracture in his ankle. Chemo also cause major bone loss, so we aren't sure if the pain is because of the GCSF shots or what. He just can't walk on it right now, it is too painful. So please pray that there is nothing wrong. Thanks.

We have a praise. Bryon got a promotion at work! His boss left a few months ago, and Bryon was interviewed for that job today and got it! We are so happy! Praise God! We need the money; remember my income was wiped out with this cancer diagnosis. This won't make up for my lost income, but it will help! Thank you, Jesus!!

I have been reading a lot of CB sites, and there seems to be a common thread. I have had people telling me that we are 'lucky' because of all the free stuff we have been getting. Like, for example, Angel Kiss Foundation paying my car registration. Well, let me tell you, we would rather NOT have the free things; thank you very much!Come on! The free things are sooooooo NOT worth it. What are people thinking!?!? That is just it; they don't think. If they want the free stuff (and the child with cancer), they can have it!!! All you with children, give them an extra special hug tonight. Thank God for the healthy ones. I know other osteo families read this site~~~so give your kids an extra extra special hug, and live every day to the fullest. We never know when it will be their last.

Well, I need to go. Please pray for our safety tomorrow. I will try to post tomorrow and let you know how the trip went. Please pray that the chemo gets started SOON! Again, we want to get started so we can get done so we can get home! I know, I know; I sound like a broken record! Oh well. That is how it goes. Anyway, Please keep us in your prayers. Thank you. God bless you. We love you! ((HUGS))

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WEDNESDAY, AUGUST 06, 2008 02:00 PM, PDT

I apologize for having to put on the email sign in, but I unfortunately had to block some people who only come on here to find information to throw in my face, and twist my words to suit them. It is truly pathetic. They don't really know what I am going through, they just judge me and form opinions of me that are based on gossip and inaccurate 'quotes' from me. I have been reading MANY CaringBridge sites, and others have been having the same problems. I guess there are people out there who like to kick you when you are down. Oh well. I am praying for them; I really am. Thank you for your understanding in this matter. I know CarePages is run the same way~~need an email to enter the site. God bless you.

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TUESDAY, AUGUST 05, 2008 07:39 PM, PDT

Good evening. Today was another beautiful day here in Carson City! The temperature is nice. It has been a good summer, not too hot. The highs are high 80's to low 90's, and windy. Well, the windy is nothing new; it is always windy here!! But today it was cloudy; and they are expecting thunderstorms tomorrow! Yay! So we are quite comfortable with this weather.

David had a good day today. Andrea called and said he doesn't need the GCSF shots anymore! Woo-Hoo! His ankle is hurting him pretty badly, and we know it is because of the shots. They cause bone pain; sucks! He also gets a rash on the backs of his arms where I give him the shots. That is a possible side affect~~~so of course it happens to David. He has that sensitive skin, so of course he will get a rash. Poor kid. Again; he can't catch a break! But otherwise he is doing ok. He isn't eating as much as we would like him to, tho. Tonight he only had 2 tacos for dinner. But he still has his shakes at night. Actually, last night I made him a banana split. He didn't finish it, but he ate a good bit of it. He is not looking forward to leaving again on Thursday, but he knows we are in 'countdown mode' now. We just can't wait until this is over. We do know it will never be totally over; but it will be over for now. And we are just going to pray he never relapses. So for now we are just taking it one day at a time.

I had to run errands again today. I had to go to the post office and mail back David's school work to the school we are doing independant study through. Then I had to go to the DMV and register Bryon's Pilot. I got to see Jeremy! I was happy to see him. I don't get to see him every day, so when I see him it is great. I miss him. He is such a great kid. Well, I guess he isn't a 'kid' anymore, he is 26. But he will always be a 'kid' to me in some ways. He is my child, after all. Plus I cleaned my kitchen and sorta reorganized it. Anyway, it was a busy day today. Tonight Bryon and Jeremy are at a friends house playing games~~some guy time! Guys need fellowship, too. It is good for them.

Well, I need to go. You all have a good night. Thank you again for checking in on David. God bless you. We love you.

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SATURDAY, AUGUST 02, 2008 08:35 PM, PDT

Good evening. It has been a beautiful day here in Northern Nevada. I am glad that Summer is 1/2 over. We feel like we are wishing our lives away at this point~~just waiting for the end of October to be here! But since Fall is my favorite season, I can't wait for it. I hope we have a nice long Fall this year. Winter is my second favorite (VERY close behind Fall), and we missed most of last Winter at home. This will be a good Fall and Winter, with David cancer-free!!

His broviac site looks great! The skin is still discolored, but the infection is gone and there isn't any more 'crusty' stuff around the insertion site. Thank you for your prayers for him. He is feeling ok, just tired. He has those awful dark circles around his eyes again. We hate it when he looks like he does now. That is one of the many reasons why we can't wait until this nightmare is over! Again, thank you for your prayers for him.

Today Bryon, Jeremy, Lucy and Jennifer tried to get Jeremy's quad out of the ravine it is in; no such luck. I guess they are just going to have to leave it there. They said it is beyond fixing anyway. When Jeremy saw the place where he went over the cliff, he couldn't believe he is still alive! God was really looking out for Jeremy that day (July 4th). Jeremy now realizes why Bryon and Lucy were so freaked out when they couldn't find him! Praise God, again, that not only is Jeremy still alive, but he was not seriously injured in that accident. I feel bad for the kids~~the quad was new. But better the quad totaled than Jeremy! So that is what they did today.

Bryon and I are still trying to recover from our last trip to Oakland. Having to give David his antibiotics at midnight and 6am was tough! I am so glad that is over! We are still pretty tired, tho. We wanted to sleep in yesterday, but we couldn't. That was a bummer.

Here is why we couldn't sleep in. Bryon had a little car that we thought would get great gas mileage and we could use for our trips to Oakland. Well, it didn't get that great of gas mileage and it was too small for all the stuff we have to bring with us. So we prayed about what to do. Bryon also didn't like putting all those miles on my car (2005 Honda Pilot). So God led us to a 2003 Honda Pilot for lower payments than his little car! And you can't go wrong with a Honda! The dealer gave us a great deal, and then knocked another $500 off the price! And we got a great interest rate; 4.75! God knows what we need, and led us to it. God is good! Anyway, the DVD player wasn't working so we had to take it to the dealer (in Reno) at 8am to have them fix it! So that is why we couldn't sleep in yesterday. We tried today, but Jeremy and Lucy needed Bryon's help......so there you have it. We are still tired!

Well, I need to get going. You all have a great evening and a good day tomorrow. Thank you for checking in on David. Thank you so very much for all your prayers! God bless you all. We love you.

Kristi and the Koury Klan

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FRIDAY, AUGUST 01, 2008 07:45 PM, PDT

Good evening. David is done with 9th grade!! He has a month off before starting 10th grade! Yay! He is happy about that. He finally finished school yesterday. His counts aren't good now, his ANC is only 145. It should be in the double digit thousands! So he is still on the GCSF shots for at least through the weekend. And he will not be able to go to church on Sunday. Oh well. His health is our #1 priority. We know that God understands.

I still need your prayers for a health situation I told you about on Wednesday. Please continue to pray that this problem goes away quickly. It is still mild, praise God, and it will remain that way~~~but it just needs to run it's course. Please pray that it runs it's course very rapidly! Thank you.

Well, that is about all the news for now. Please continue to pray for David. Thank you for checking in on him. God bless you. We love you. ((HUGS))

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WEDNESDAY, JULY 30, 2008 04:59 PM, PDT

I have a quick update/prayer request. We have another health issue going on right now. So far it is mild, please pray that it stays mild, and that it goes away quickly. I will update what it is at a later date. Thank you for your prayers in this matter. God bless you. We love you.

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MONDAY, JULY 28, 2008 08:51 PM, PDT

Good evening. It was a beautiful day here today. This morning started out smoky, but now it is clear. We can actually see the mountains! They aren't that far away, but the smoke has been sooooo thick that we can't see them. And it hasn't been too hot, either. My house is pretty cold in the mornings, like low 60s, and now it is only 70. So we stay nice and cool in our house. Our swamp cooler works great! It helps that our humidity is only 7%. So it was a pretty nice day today.

David is still not feeling up to par. His broviac site is looking a lot better, though. The rash is almost healed, though I am afraid it will leave a scar. And the insertion site is not weeping as much as it was. Of course, we aren't sure if it is because of the BMT dressing or because of the antibiotic. Hopefully we will be able to use some kind of adhesive dressing on him when we go back next week. They have a barrier film we can use before we use the adhesive; but we had to clear the skin up first. At least we are making some progress! David is feeling pretty tired; but that could be because we have to wake him up at midnight and again at 6am to take his antibiotic. Poor kid. See, like I have been saying for months, the child can't catch a break!! If it isn't one thing, it's another. But at least he is enjoying his time at home. We leave again on August 7th, so we still have over a week at home left. He is really enjoying being at home.

We went to church yesterday, David wore a mask. It was our grand opening for our new building. The place was packed! It was good to go to church. The building is so nice. I hope it will be big enough! I know some people were there just to see the new building~~~it has been 20 years in the 'making' to get a new building. David walked in without his crutches~~to clapping by the ones who saw him. He is still slow, but he was on his own two feet! They were happy to see him walking, as we all are. It was a good day.

Well, that is all that is happening here. Thank you for checking in on David. Please continue to pray for David and his total healing. God bless you. We love you.

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FRIDAY, JULY 25, 2008 12:46 PM, PDT

Good afternoon. I heard from Bertha a little bit ago; and the preliminary report is that they don't think it is metastatic osteo. Praise God for that! On a personal note; as a parent of a child with cancer, that is not 100% encouraging. We (cancer parents) want to be told by the doctors that they are sure it is or isn't something. To be told they don't think it is (or isn't) just doesn't totally set our minds at ease. I mean, when David had the spots on his lungs, they said they didn't think it was osteo, but they weren't sure. That leaves the 'window' open for it to be what they don't think it is! I hope that makes sense. I know you osteo warriors who read this will understand what I am saying! I know the doctors aren't God, but we live such a scary life with our children, we want to be told the truth! And we want to be able to prepare our children (and ourselves) for more bad news. We want the 'for sure' thing! But anyway, they are still going to read the reports on Juvenal and get the 'official' word, but we are still praising God that he seems to be ok. We will see him in two weeks; he goes in August 6th and we go in August 8th for more chemo~~~the same chemo again! Methotrexate this time. Thank you for your prayers.

David is not feeling very good today. He hasn't eaten much all day. So far he has been able to hold his weight around 115 pounds (he is now 5'7"), but we really don't want him to lose any. These kids (cancer kids) seem to lose weight very rapidly, and we don't want him on that downward slide again. We really don't want the feeding tube again. Hopefully he will feel better soon. I got a call from the hospital and he doesn't need his neupogen shots for the next two days, so he is happy about that! Please pray that he feels better soon. Thanks.

Well, I need to close for now. Thank you for checking in on David. Thank you for writing to him, he enjoys reading the entries, when he is up to it. You all have a good day. God bless you all. We love you.

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WEDNESDAY, JULY 23, 2008 11:06 AM, PDT

Good morning. David still has the pus coming out of his broviac insertion site. We are using a bone marrow transplant dressing, and we aren't real happy with it. It is not a very secure dressing as there is no adhesive dressing holding it on. That is the point; apparently David is allergic to all adhesives; but it is just not a secure dressing. He has to wear a tank style undershirt that is about 2 sizes too small on top of the BMT dressing so it will stay stuck to his chest. This is so frustrating! I have to change the dressing every day. Please pray that the pus stops coming out of the 'hole' and the infection doesn't get worse. Thanks.

I also request that you pray for another boy we met at Children's Hospital. He is about 5 months younger than David, and he also has osteosarcoma. It is in his left femur (David's was in his right). He had his limb-salvage surgery in May (he was diagnosed in Feb). They were at he hospital the same time we were last weekend having the same chemo; the doxorubicin and cisplatin; and he had a mild seizure. They did a CT scan on his head and they found a very small area of calcification on his brain. His name is Juvenal, by the way. They are afraid the spot on his brain is metastatic osteo. He didn't have it in his lungs, fortunately. They are still there waiting on an MRI. They had an xray also. Please pray for his family. Please pray that it is NOT metastatic osteo. This monster is so awful!! Bertha, the mom, will be calling me as soon as they get any information, and I will post it here. Please pray for them! They are a sweet family with 4 children, also. They have a girl who is older than Juvenal, then Juvenal, then 2 more boys. The daughter is really worried about her brother. They just found out that the daughter has a semi-severe case of scoliosis. Anyway, please pray for that family. Thanks.

Well, I gotta go. Thanks for checking in on David. Thank you for all your prayers. God bless you. We love you.

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TUESDAY, JULY 22, 2008 07:26 AM, PDT

We are home; yay!! We were discharged at midnight on Sunday night. David walked all the way to the Family House WITHOUT his crutches! Even though it was late and he was tired, he did it! He is doing so good!! His ankle hurts, and the bottom of his foot hurts, but he is such a trooper! We are so proud of him and how he pushes himself. Let me tell you; the people who knew this child before would be very impressed with him now! I wish you could all see what he is going through. Not because you are stupid and can't imagine what he is going through (although you really have no idea); but because you wouldn't believe the strength of this child! Who would have thought this scrawny, neurotic child of mine would have so much courage and strength! It is unbelievable! People who haven't seen him for a year or more would not recognize him. Again, we are so proud of him. Yep, I am bragging on him; deal with it! LOL.

David did throw another curve ball, though. He has what they believe to be an infection around the broviac site. He is now on antibiotics and his site has alot of pus and is gross. The rash is not any better, and around the insertion site is really gross. They think it is a skin infection; but they want to make sure it doesn't go down the broviac catheter into his heart. It is always something with this child! But he keeps plugging along. And we are home now until Aug. 7. Yay! We will leave on the 7th for chemo on the 8th. We only have to make this trip for chemo 6 more times! There will be other trips; broviac removal, scans, etc.; but they will be one day trips! Please continue to pray that David stays cancer free for ever! And please pray that this infection will clear up quickly and not go to his heart. Thank you.

Well, I gotta go. I just wanted to update before David got up and my chaotic day starts. I have to do blood draws and what not today. Have a good day. God bless you. We love you.

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SUNDAY, JULY 20, 2008 12:16 PM, PDT

Good morning. It is an overcast day here in Oakland. We did get the results from David's other tests. They all look normal! Praise God!! The kidney's look normal, and his heart is still normal. We are sooooo happy about that. We have heard of other children who had to stop chemo early because their hearts were damaged, or their hearing was damaged. We have 'dodged that bullet' so far! Thank you Jesus! Other that the fact that David had cancer, he is healthy! We can't wait until we can say he is a 'cancer survivor' instead of a cancer patient! His last chemo will be on October 10; we will have come full circle by then. We will have made these trips for a full year. We cannot wait until they are over! But it is nice to know there is a light at the end of the tunnel....and it is NOT an oncoming train! LOL! Finally the end is in site!

We think we are going to get out of here tonight! Dr. Styles knows how much we like to be home, and she appreciates the fact that we have a long drive home, so she likes to get us out of here. We won't get out until around 10:00 or so, but that is ok; we will just go to the Family House tonight and leave in the morning. Dr. Styles knows that it is easier to get out of the Family House in the morning that out of here in the morning!! So if we are already out of here......we can just leave whenever we want to! Yay! So that is the plan. Then we can get home tomorrow early. Then we get to be home until August 8th!! David is sooooooo happy about the long time at home.

Well, that is all that is happening. We only have 6 more trips to Oakland!! Then, of course, we have the scans every 12 weeks, but that is ok. That is just a day trip. Long day, but just a day trip. So that won't be so bad. We are praying David NEVER has to come back for more chemo or surgeries! His first leg-lengthening surgery is scheduled for Dec. 29 in the early am; maybe 7:00 or 7:30. David has another appointment with Dr. O on October 9, and we will get all the details figured out for the leg-lengthening then.

Gotta go. You all have a great day. Thank you for coming to visit David and check up on him. God bless you. We love you.

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FRIDAY, JULY 18, 2008 04:19 PM, PDT

Praise God!! David's lungs are clear for the first time since October!! We had the CT scan this morning, and the doctor came in and told us that the lungs are clear! Those two spots that were there in June are GONE!! There is no cancer in David's lungs! Thank you all for your prayers! We are so excited! David also had a hearing test today and he still has perfect hearing! Things are going really good!

This has been a great trip, so far. Yesterday we had David's doctor appointment in SF; Dr. O was very happy with David's healing. David walked for him (without crutches) and the Dr. said he is doing great. He still has a bit of a hip rotation, but that should fix itself in time as David walks better. The 'crunchy' knee is caused by scar tissue, and by tendons rubbing on the metal knee. There is bone growth around the rod at the top of his femur. Everything looks great! And we met a young man (he is 21) in the waiting room of radiology who had a femur and knee replacement in December and he is walking wonderfully; such an inspiration to David. And today when we got here they started hydrating him very quickly!! Things are going so good, it is kinda scary. So hopefully the rest of the weekend will go as good. He should start chemo around 6:00, and it runs for 48 hours. So hopefully we will go home on Monday. Rachel is here with us, so David does better when one of his siblings are here with him. So everything is going smoothly so far.

Well, I will post later if I get any results from David's other tests. Oh yeah, he had an echo-cardiagram, and a kidney test besides the hearing test.. He has had a busy day so far. If I get any results from those tests, I will post. Thank you for coming to visit David; and thanks for your prayers!! God bless you. We love you.

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WEDNESDAY, JULY 16, 2008 10:38 PM, PDT

Good evening! We are leaving early tomorrow morning to go to San Francisco. We need to go to Oakland first; we have to check into the Family House before we go to SF. We don't have any idea what time we will be done in SF, and the Family House 'closes', so we need to make sure we have our room first.

David's appointment is for 2:00. Dr. O is always running late, so we will probably see Teagan! She has an appointment with Dr. O at 3:15. We are excited to see her again. David wants to surprise Dr. O by walking without his crutches for a little distance. He is one determined young man! He wants to walk so bad! They told us he won't be walking for a year; but I think David will be walking before that!

Rachel is coming with us this time. It is sooo much easier for David when one of the other kids come with us. He doesn't get quite as homesick. Right now Rachel and Jennifer are housesitting for Jeremy and Lucy, so it will be just Jennifer there until Friday night. Then Jennifer will be here until we get home. When Jennifer goes with us, Rachel stays here. They are great girls, and they take good care of our animals and house when we are gone. So it will be nice to have Rachel there with us.

Please continue to pray that David's CT scans come back clear on Friday. His appointment for that is at 10:00am. Please pray that everything comes back positive. We are getting 'scanxiety' now. This is such a scary time. We want David cured of this monster. The odds are stacked against him, but we know that God does not care about odds and numbers. I refuse to put God in a box; and we are still praying for our miracle. Please continue to pray for us and for David. Thanks.

Please pray for us to have a safe trip to Oakland and San Francisco tomorrow. We will go to the Wharf after David's appointment and have dinner on the Wharf. David is looking forward to some clam chowder in a sourdough bowl! Yummy!! I will let you know how the appointment went, and what the Dr. says about David's knee. Have a good night tonight and a good day tomorrow. God bless you. We love you.

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TUESDAY, JULY 15, 2008 10:21 PM, PDT

We are home! David and I made it home around 2:15 or so. We left about 9:45 and stopped at Subway for brunch. Bit surprised that we ate there, huh? We only had to sit in road construction for about 5 minutes, yay! One of the things I hate about summer is road construction!! But it wasn't too bad, praise God. I was praying that I wouldn't have to sit too much in it, so I was glad it worked out like it did. I forgot to tell you that Bryon made it home safely on Monday morning. He had to be at work at noon, so he left about 7:15 Monday morning and made it there safely. It was a fine trip for David and I today. Again, he just watched movies all the way home. And we get to be home for 2 nights. We are thankful for the 2 nights we have home.

We are still dealing with a horrible rash at David's broviac site. I am enclosing a picture of it. Poor child just can't catch a break! The rash itches him sooooo badly. We had Pam Jones, the wound care specialist, in to look at it. She is the one that helped us know what to do with the bedsore; and now it is healed! She gave me a bunch of other dressings to try on the broviac; but they need to be changed daily. She is going to come in and check it on Friday when we are there, and see how it looks. She gave me silver impregnated disks to put at the insertion site, and we are just praying that the new dressings work. It might just be a case of changing what we are using every other day, or something. I don't know. This child has such severly sensitive skin! It sucks!! We feel soooo bad for him. Please pray that we can find the right dressing for his skin. He has to have this broviac for at least 4 more months, and he can't live this way! Grrrr. Thanks for your prayers.

We go to San Francisco on Thursday for an appointment with Dr. O'Donnell. We are going to ask him about the crunchy noise we hear in David's knee. From our support group website it seems to be a common occurance, so we will see what Dr. O says it is. Then we go on Friday for David's CT scan before chemo. Please pray that the scans come out clear. Thanks. Back to the broviac site, Anne said she will put a BMT dressing on David when we get there for chemo; it seems to work at helping dry out the rash. It is just not secure enough to use at home.

Well, you all have a good evening. Thanks for all your prayers. God bless you. We love you.

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MONDAY, JULY 14, 2008 06:45 PM, PDT

David finally cleared!! The level came back at .08!! He drank I don't know how many bottles of Gatorade to get there, but he made it! But we are not going home tonight. I did NOT want to leave in rush hour traffic, so we will go home first thing tomorrow morning. David said that was ok with him, so we will get a good night's sleep tonight and leave early (but not too early) tomorrow morning. Pray we have a safe trip home tomorrow. Pray we have a good night's sleep tonight! Thank you for your prayers, they worked!!

I had a good conversation with Nita today~~~Chris came in for more chemo. He is looking good, and doing the limp/walk that David is doing on those 'fake' legs! David is 'walking' better than Chris is, but David has been at it longer. I am proud of these 2 boys and their determination to walk!! Nita has the same complaints with the hospital that I have. We are both going to talk to Kim; the nurse manager; and file complaints. The roommate David just had, the cute little girl: yeah, she is (with the exception of this time) ALWAYS in 5 South (the private rooms). Go figure. I won't bore you with my problems, just pray it gets better. 4 more months of this is just toooooo much! They know they have us over a barrel, where else can we go? But at least when we got over to 5 East we had one of our favorite nurses~~~Anne. And we got to see Terri, she was David's roommate's nurse. So that was good.

Well, I am going to go for now. You all have a good night and I will post when we get home tomorrow. Please continue to pray that David's CT scan on Friday comes out clear. Thank you. God bless you. We love you.

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MONDAY, JULY 14, 2008 11:47 AM, PDT

Well, David's level is .15. GRRRRR They are going to run STAT labs at 1:30 so hopefully he will clear by then. Please pray that he does! There is more 'bad' news.....of course! We got moved from our private room to a shared room. That is bad enough; but David is NOT by the window, AND his roommate is a girl! They say they don't do that (room opposite genders together), but obviously they do!! She is just a baby (19 months old) but still. Oh well, I just can't wait to go home!! We NEED to go home! Anyway, please pray that he clears this afternoon. Thanks.

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SUNDAY, JULY 13, 2008 05:59 PM, PDT

I just want to say 'thank you' to those of you who have signed the gb with encouraging words. I just sometimes feel so alone in this battle (as a family, alone, not just me alone). I am sorry that you others are fighting and/or have fought the same battle~~~Veronica (Kelly), Ranae (Shane) and others. I wish there was no such thing as Osteo!!! But thank you for your encouraging words. They are a balm to my soul. Thanks again. I will post tomorrow and let you know where David's meth levels are. Have a good evening. God bless you all. We love you.

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SUNDAY, JULY 13, 2008 11:53 AM, PDT Good morning. All I can say is pray we go home. At the 24 hour mark David's level of 'meth' is supposed to be <5.0. Usually he is 4.something. Well, this morning he was 7.42. That is listed as still a toxic level. Anything above 5 at the 24 hour mark is toxic. So we are having him down the Gatorade; pray it works. He is not handling this chemo as well. He has been very nauseous and had diarrhea last night. So we went ahead and let them give him the benadryl~~~that helped with the nausea, but now all he wants to do is sleep. The Ativan makes him pretty sleepy, too. So it is hard to get him to drink when he won't wake up to drink. We think his body is just not able to tolerate these chemos as well as it used to. I don't know. Please just pray we get to go home on Monday. Thanks.

Well, Bryon is just about here with lunch. You all have a good day, and I will post more later if anything develops. God bless you. We love you.

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SATURDAY, JULY 12, 2008 09:23 AM, PDT

Good morning. It is a cloudy, humid morning here in Oakland. It looks cold outside, but it is not. It looks like it could rain. David wants us to wake him up if it should rain~~~don't think it will.

Well, as usual, chemo didn't start on time. It didn't start until 1:30 this morning. A bit ridiculous in our eyes. I know it seems like I am complaining, but they just don't understand. They don't have a child here, and they get to go home every night. They don't understand what it is like to be away from home, family, and all that night after night, week after week, month after month. They don't understand how much every night (every minute) at home is cherished; and when they don't get things going, it is robbing us of that time at home. Trust me, unless you have been 'stuck' in a hospital for as long as we have, you just don't understand. And our poor children just want to be home. Nita says the same thing. She is away from home and family, and Chris gets the same way David gets. She 'nags' the nurses to get the chemo started, too; I thought it was just us that did that LOL! Like I said, the nurses get to go home to their families and homes every night. We live over 200 miles away, we can't do that. The sooner they get things gong the sooner we can go home. We just can't wait until this is over! I must say I misspoke yesterday. A lot of the nurses care, they just have no idea what we parents are going through. It is hard enough to have to watch our children fight for their lives; have to watch poison going into our children's bodies; have to watch our children be sick, pale, bald, etc; I just wish they could be a little more compassionate and start the chemo when it is scheduled to start. Sorry for the 'down' attitude~~we are just tired and frustrated. We are tired of living out of suitcases; I never unpack the toiletries bag, just restock it. I only unpack the suitcases to wash the clothes and then repack it again. This is sooooooo old! But if it all saves my son's life; it will have all been worth it! Anyway......

David is still sleeping. Please pray that we will get to go home on Monday. Well, pray he clears Monday morning. If it gets too late, we will just go to the Family House and sleep and leave first thing Tuesday morning. I do NOT like to drive at night~~~I get too sleepy. So please pray that he clears Monday morning so we can go home Monday afternoon, early. Thanks.

That is about all for now. Have a good day. We will make the most out of our day today. Thank you for your understanding of me and my need to vent. Thank you for your prayers. God bless you. We love you.

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FRIDAY, JULY 11, 2008 08:22 PM, PDT

Well, we finally got into our room about 12:00pm. We did get a private room; Chris had just been discharged and Nita asked them if we could have it. The charge nurse, John, said he was already planning on giving it to us. Praise God we got it. We just don't know for how long. Another child that I have made friends with the mom just got kicked out of the private rooms to make way for another child. So we will see how long we get to stay here. Please pray that we don't have to move~~~that is worse on David then not having the room in the first place. It is what it is, but please pray that we get to stay.

They finally started the hydration at 4:45. There was a mix-up because David gets the bicarb hydration WITHOUT the dextrose; and they kept sending up bags WITH the dextrose. The problem is, the dextrose makes his blood sugar go through the roof, so they don't give it to him anymore. Well, they went ahead and started him on the hydration with the dextrose, just to get him started!! It is looking like we won't be out of here until maybe Tuesday now. They took so long to get him started! Oh well. We will just have to play it by ear. We want to leave on Monday, but I am afraid we won't be ready to leave until Tuesday. We will see.......

This has been a frustrating day all around. I was planning on spending the weekend with Bryon (he made it here, yay!) and then follow him home on Monday. Well, he has to be in the office on Monday, so he will be leaving early Monday morning. Now I have to discharge David all by myself. It is a pain doing it with just one person. I will do it, I don't have a choice, I just won't like it. Then I will just drive home. That part is not a big deal, it is just not what we had planned. Oh well, I should know by now not to make plans.

Well, that is about it. Bryon is staying with David tonight. You all have a good night and I will let you know how things are going tomorrow. David should start his chemo around 11:00, but I will let you know what time it actually starts. God bless you. We love you.

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FRIDAY, JULY 11, 2008 08:47 AM, PDT

Good morning. Hey, guess what!?!? I called the hospital, and all the private rooms are filled. Bet that comes as a surprise, huh? I am so not surprised. Oh well, that is the way it goes. David is already depressed again~~can't say that I blame him. The child psychologist told us that his healing has a lot to do with his outlook, and I don't blame him for his depression. Besides being a child fighting for his life; he has to do it in not so good situations. I am just praying now that we get a decent roommate. We have had some real doozies!! We come a LONG way to get our son the best treatment possible; I just wish it could be in a private room so he can not be so depressed and withdrawn. Oh well. I will write when we get to our room and let you all know how it works out. What they don't understand here is that we come from far away; so we want to get in our room, get the hydration started on David so we can get the chemo going so we can get back home ASAP! We have to come back on Thursday again, so we like as much time home as possible. They really don't understand that here. And you can't use adult logic on kids, (especailly hormonal ones) so it is hard to 'reason' with David. He wants to be home, NOT HERE, and they have a lot of kids here, so most of the 'staff' don't really care about some of the kids. They have a job to do. I am thankful for the ones here that do care: Autumn, Chuck, Terry, Anne, and Ernesto, to name our favorites! Anyway, I am disapointed that things don't go the way David wants them to. I guess I look at it this way~~~he is in a fight for his life; he has a better chance of dying than living at this point; why can't we make this experience better for him under those conditions? This sucks!!! Sorry. Again, I will write more when I know what is going on. Please continue to pray for the best room possbile. Thank you. God bless you. We love you.

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THURSDAY, JULY 10, 2008 06:06 PM, PDT

Good afternoon. Well, we made it here safely. We left around 12:45 and got here at 4:45. Then I just drove through Jack in the Box for dinner, and we ate at Family House. It was a VERY smoky drive. The California fires are really polluting the air with smoke. I even had ash on my car in my garage this morning when I was loading up the car. We aren't even that close to the fires; but we are getting the ash. Luckily my car has an air filter in the air conditioner, so the air David was breathing in the car is filtered. It cost extra to do that, but we have to have it. David did get nauseous in the car~~he almost always does. But he didn't throw up, so that is good. I just turned the air up, and he faced the back vents on him and he was ok. Once we got out of the mountains he felt better. Well, I thought I would let you know that we made it here safely. And I got a parking place in the Family House garage~~~hard to come by! Praise God! Thank you Jesus!

Please, please pray that we get a private room. We heard from a mom here that there are 2 private rooms open right now. Please pray that they stay open in the morning and we get one of them!!! We have had such a hard time with roommates lately, that we would really like a private room. Please pray that we get one. Thanks.

Well, that is about all for now. I will let you know if we get a private room or not. Please pray that Bryon has a safe trip here tomorrow. His last day of class is tomorrow, pray he gets out early. He is going to come straight here, and David misses him (so do I, of course). Well, thanks for your prayers, love, and support. Thank you for checking up on David. God bless you all. We love you.

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WEDNESDAY, JULY 09, 2008 09:46 PM, PDT

Good evening. Today was a pretty good day for David. I got a call from Connie and he doesn't need the GCSF shots anymore!! He only had one more, but he doesn't need it. We are a go for chemo on Friday. We will be leaving tomorrow morning. Please pray that we have a safe trip to Oakland. Thanks.

Our weather is horrible!! The temperature isn't too bad; we have a swamp cooler so we stay cool inside. It is the smoke! It is sooooo bad. Our weather forecaster said that Carson City is in the bulls-eye of the smoke~~~we who live here could have told him that! It is so awful. David already has compromised lungs, this isn't helping! Please pray that the fires in California and put out soon. Tonight the sun was blood red as it was setting. It was weird. We are just really tired of all this smoke. There is so much, you would think the fires were just a couple of miles away from my house. Anyway, please pray that the fires are out ASAP! Thanks.

I talked to Chris' mom again yesterday. It was really good to hear from her. Chris is doing pretty good. He will be done with chemo in October; about the same time we are. We hope to see them Friday, they will still be at the hospital. Chris was surprised how weak his leg is; the one with the fake insides. Between him and David, they just both want to be rid of the crutches and walking! But they are tough boys, they will get there.

Well, I need to go. You all have a good evening and a good day tomorrow. I will try to post tomorrow and let you know how the trip went. I hope to beat the traffic; I hate traffic. So please pray that we are safe and that the traffic is light; thanks. Thank you for visiting and checking up on David. God bless you. We love you.

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MONDAY, JULY 07, 2008 01:36 PM, PDT

Well, Bryon made it to Belmont safely. It took him 6 hours to get there, though. It was a holiday weekend, so he hit a lot of traffic. But he did make it there safely. Thank you for your prayers.

I had to do a bunch of errand running this morning. I left David home alone while I ran the errands. Normally, we would leave him home alone with no problem. But now I really hate to leave him home alone. He can't move fast enough if something should happen, or someone came to the door, or what have you. But he didn't really feel like going with me, so I just went. I enjoy being alone sometimes. I can listen to what I want to listen to in my car, I can pray, etc. It gives me some time to just be quiet and still. So I have no problem running the errands by myself.

Please continue to pray that David finishes school soon. He finds it hard to concentrate sometimes. The next school year starts soon, and I would really like a break before he has to start 10th grade! Of course, the beauty of homeschooling is I set our own schedule, sorta. We are going through an actual school, so we have tried to stay on their schedule. But in October that all went south! So he will probably still be on his own schedule; they understand. But still please pray that he finishes his 9th grade year soon!! Thanks.

Well, that is all that is happening so far today. I will post if anything comes up. Have a good day. God bless you. We love you.

P.S.~~~remember I told you David has some blonde fuzz on his head? Yeah, well he is losing it!! I really wanted it to stay there; it is so white-blonde and soft. Oh well. Such is the life of chemo.

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SATURDAY, JULY 05, 2008 11:22 PM, PDT

Back to the summer background! Yes, it is summer now!

Today was a quiet day, sorta. David's 'Make-A-Wish' planners came by today; he doesn't want a Disney cruise! We had our doubts, but he finally admitted that he was only doing that because he thought that was what everyone else wanted. And he really doesn't want to travel anywhere, go figure! Silly goose! So what he decided on was a shopping spree! We had a feeling that anything that involved traveling would not be what he wanted. He has been doing a LOT of traveling these past several months. Sure, a cruise would be for fun, not chemo, but still. He just wants to be home. Like April said, his true wish would probably be a whole month home! If his wish was going to be granted, say, a couple years from now, he would have jumped on the chance to go on a cruise. But, like I said, he is tired of being away from home. Can't say that I blame him. Maybe someday we can take him on a cruise......who knows? Of course, we are all kinda disappointed; we wanted to go on a cruise! But this is all about David. He just has a really hard time being selfish. So it was a pretty good day. Oh, April and Marty brought us ice cream!! Yummy!! Tasted so good. And, besides cleaning house, that was pretty much what we did today.

David is feeling better. He still has the dark circles around his eyes, but he says he is feeling better. We leave on Thursday to go back to Oakland. He doesn't want to go, as usual, but knows we have to. He is getting the 'Meth' chemo again; so I already have the gatorade in the car. I am sure he will sit in the back seat and watch movies all the way there, so I will be in the front alone. But that is just fine; I wouldn't stop him from 'enjoying' the ride as much as possible.

We had a scare yesterday. Jeremy went off a cliff with his quad! Fortunately, he is fine~~~~not so much for the quad. It rolled on top of him, and he grabbed something to stop his decent down the hill. He landed about 15 feet down. His brand new quad went to the bottom of the ravine, over 200 yards down and is completely totalled; praise God Jeremy isn't! He could have been killed! He is pretty banged up, but alive! I praise God he wasn't badly hurt.

Well, it is late and we need to get to bed. You all have a good day tomorrow. Please pray for Bryon, he leaves tomorrow for Belmont. Please pray he has a safe trip. Thanks. Thank you for checking in on David. God bless you. We love you.

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FRIDAY, JULY 04, 2008 12:49 PM, PDT

Happy 4th of July! Happy Independence Day!! God Bless America!

David is feeling a little bit better today. It will take a couple of days for him to be back to 'normal', but he is on his way. He still has the circles around his eyes, but he says he is feeling better, so that is good. Thank you for your prayers.

Please keep praying for our miracle. We have just learned of another death from this horrible monster. Her name was Susan, could you please pray for her family? We just got notified that she died yesterday (7/3/08). I do get scared for David every time we hear of another death. His prognosis is worse than some others' because his cancer had already metastasized to his lungs at diagnosis, but I refuse to put God in a box!! Talking to Connie yesterday was a little difficult (I didn't post this last night because I hadn't talked to Bryon yet); she wants to push up his Make-A-Wish. David wants a Disney cruise, so she is hoping it can be planned in the next 5 weeks or so. We aren't getting our hopes up, but we will see. She said that if we wait until David's chemo treatments are over, it is hurricane season (she said Disney cruises go to the Bahamas). And she is not sure he will be around next summer. She also said that if a child doesn't get his Make-A-Wish, it is harder on the parents than on the child. At the end, the child just wants to be home surrounded by friends and family. So......we will see what happens. We don't know if we have to have passports to go on a cruise; and we don't have any. So we will play it by ear. We are meeting with April and Marty tomorrow, so we will take it one step at a time. But please just keep praying for God to work a miracle in David's body and heal him completely! Thanks.

I mentioned several weeks ago about the possibility of maybe going to MD Anderson in Houston if we run out of options in Oakland. Well, we have been doing a lot of research and talking to others~~~~yeah, we would NEVER go to MD Anderson. Besides the fact that they have no open trials for osteosarcoma, they aren't pediatric and we aren't totally comfortable with what we have heard from them. We talked to a nurse yesterday who is from Tennessee, and we would rather go to St. Jude's Children's Hospital. We know the necessity of a 'free standing' Children's Hospital as opposed to an adult hospital with a children's 'wing'. But, at any rate, please pray that we don't have to do that, either. We just want all our treatment where we are with the specialists that we have. Thanks for your prayers in this matter.

Please pray for Rachel. She has the opportunity to go to Iowa with her job, and she really wants to go. It would be a great opportunity for her. Back last summer she flew to Las Vegas for her job, so she is becoming a 'world traveler.' It is good for her to be doing this stuff; but we miss her when she is gone! Pray that she is able to do it; don't know all the details yet.

Well, Bryon, Jeremy, and Lucy are gone quading now. Rachel decided to stay home and play games with David. So I am just cleaning house (so what else is new?) and the kids are doing their own things. So it will be a quiet day. When Bryon, Jeremy, and Lucy get back we will BBQ the ribs; can't wait! You all have a great day today. God bless you. We love you.

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THURSDAY, JULY 03, 2008 08:23 PM, PDT

We are finally home! Yay! We didn't leave home until 8:00am, but that was fine. We got to the hospital at 8:30. We live is such a small town...no traffic! They took us in pretty much right away to take David's vitals and draw some blood for a cross and match. He needed 2 units of red blood cells and a unit of platelets. Connie said the headaches will be gone right away, and overall he will feel better tomorrow. He is still pretty tired, it was a long day. We didn't leave there until 6:00; so we spent the whole day there. But the bright spot of the day was we got to see Teagan! Her mom, Wendy, brought her in for a check up. It was soooo great to see her. She looks so good! And her hair is growing, and is it ever soft. Like baby hair. David has a bit of blonde fuzz on his head, can't wait until it is as 'long' as Teagan's. Seeing them was a very bright spot in our day at the hospital. Thanks for coming, Wendy and Teagan!

Things here are going ok. David is doing well. He is looking forward to a day off tomorrow. He is still doing school. I feel so bad that he got 'behind' this year. There were so many weeks; between surgeries and chemo; that he just didn't feel good enough to do school. But he is getting it done, just later in the school year than everyone else.

Well, I need to go it has been a really long day. I hope you all have a great 4th of July celebrating our independence! Bryon, Jeremy, Lucy and maybe Rachel are going quading tomorrow. Jennifer has to meet up with a friend, and David and I will be home. Then we are going to BBQ ribs, yummy! Take care. Thanks for visiting. Thank you for your love, prayers, and support. God bless you. We love you.

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WEDNESDAY, JULY 02, 2008 05:57 PM, PDT

We are leaving tomorrow morning around 7 to go to Reno for David's blood transfusion. He is getting headaches and getting very lightheaded, so Connie says he will be getting 2 units of blood. We have to be there at 9. It will be done outpatient, so he won't have to spend 4th of July in the hospital. He is not happy about having to spend the day tomorrow there, but we have to do what we have to do for our son. We don't exactly want to spend the day there, either. Bryon has the day off and we had planned on sleeping in! Yeah, not so much. Oh well. Again, we will do what we have to do for David. Please pray that he tolerates the transfusion well. Thanks. Gotta run. Thanks for your prayers. God bless you. We love you.

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TUESDAY, JULY 01, 2008 08:00 PM, PDT

Sorry for the second update today. I heard from Connie today. David's ANC is 0. We are to do a STAT blood draw tomorrow, and plan on a blood transfusion on Thursday. We will go to Reno for the transfusion, Connie and Dr. Hastings will be in Reno at clinic on Thursday. So we will go to the hospital and he will get a transfusion. They told us at the very beginning; back in October; that it would be a matter of 'when' not 'if' David will need a blood transfusion. We thought we could 'beat the odds' and he wouldn't need one. The only ones he has had so far are the one during limb-salvage surgery, and the 4 to replace the ones he bled internally when he was dying with the intussusception. He has not, until now, needed one from chemo related issues. Bummer that he needs one now. The way he looks I am not surprised, though. And he is tired and gets light-headed just getting out of his chair. Oh well. Please pray that he is able to tolerate the transfusion and he does ok. Thanks.

Thank you for your encouraging words in the guestbook. I know that all sin nailed Jesus to the cross. God forgives everyone! It doesn't matter if you are Ted Bundy or Mother Theresa; sin is sin. And the Bible says that 'if we confess our sins, He is faithful and just to forgive us our sins and to cleanse us from all unrighteousness.' Isn't that wonderful? God is such an awesome God! He wants us to fellowship with Him; He is just waiting to forgive us! God has worked with me with forgiveness. I have had to learn a lot about what forgiveness is. I have forgiven others; but I do NOT put myself in the 'line of fire' with them anymore. Anyway, I am so glad that God is there for all of us, always! He is the same yesterday, today, and forever. Isn't that great?!?

I will post tomorrow when I find out the details about the transfusion. Thank you again for your support, love, and prayers. We really need it all! God bless you. We love you.

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TUESDAY, JULY 01, 2008 01:40 PM, PDT

Good afternoon. I hope everyone is having a good day. It is a beautiful day here, but kinda smokey. We are getting a lot of smoke from all the California fires. But it is breezy and beautiful otherwise here. It is getting hot, into the 90s, so I am very thankful for our swamp cooler. It works great here, what with our single digit humidity! So we stay nice and cool in the house; even upstairs is cool!

David is doing ok today. He says he feels like he is getting a couple of mouth sores, but he isn't nauseous anymore, yay! He does tire rather easily. But he just keeps on going. A few years ago we bought an imitation 'total gym' (WAY cheaper, like 1/4 the price) called a 'Total Trainer'. My Uncle saw it and he liked it better than his name brand 'Total Gym'! Anyway, David has been doing leg presses on it with just his right leg. He is doing great! His leg is getting stronger every day. He still can't walk on it without crutches, but he is getting there. It has only been 5 months, and we were told to not expect him to be walking without assistance for a year. So we think he is doing really well.

I am enclosing a story I read on another CaringBridge site. It is a good object lesson. Here goes:

One night in a church service a young woman felt the tug of God at her heart. She responded to God's call and accepted Jesus as her Lord and Savior. The young woman had a very rough past, involving alcohol, drugs and prostitution. But, the change in her was evident.As time went on she became a faithful member of the church. She eventually became involved in the ministry, teaching young children. It was not very long untilthis faithful young woman had caught the eye and heart of the pastor's son. The relationship grew and they began to make wedding plans.This is when the problems began. You see, about one half of the church did not think that a woman with a past such as hers was suitable for a pastor's son.The church began to argue and fight about the matter. So they decided to have a meeting. As the people made their arguments, and tensions increased,the meeting was getting completely out of hand. The young woman became very upset about all the things being brought up about her past. As she began to cry the pastor's son stood to speak. He could notbear the pain it was causing his wife-to-be. He began to speak and his statement was this: 'My fiancee's past is not what is on trial here. What you are questioning is the ability of the blood of Jesus to wash away sin. Today you have put the blood of Jesus on trial. So, does it wash away sin or not?'The whole church began to weep as they realized that they had been slandering the blood of the Lord JesusChrist! Too often, even as Christians, we bring up the past and use it as a weapon against our brothers and sisters. Forgiveness is a very foundational partof the Gospel of our Lord Jesus Christ.If the blood of Jesus does not cleanse the other person completely, then it cannot cleanse us completely. If that is the case, then we are all in a lot of trouble. What can wash a way my sins?Nothing but the blood of Jesus! End of case!!!!

'Cast thy burden upon the Lord, and He shall sustain thee, He shall never suffer the righteous to be moved.'Psalm 55:23

I have been struggling with this very issue. I have people in my life who think I have sinned beyond what Jesus can forgive. They are not perfect, none of us are, but they think I am the worst. Anyway, I have let the past go, and forgiven others for the times I have been hurt; I do NOT want to slander the blood of the Lord Jesus Christ by not forgiving others, or bringing up the past to use as a weapon against others. I am so thankful that God NEVER does that! He has forgiven and forgotten my past; I only wish others could do the same.

Well, I think I have taken enough of your time. Please continue to pray for David. Poor kid says he is fine, but he looks like the perverbial 'death warmed over'. He is pale with dark circles around his eyes. He never complaines, no matter what. He is such a trooper and I am so proud of him. I am proud to be his mom. Thank you for your prayers. Thank you for your love and support. Have a good day. God bless you. We love you.

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SATURDAY, JUNE 28, 2008 07:47 PM, PDT

Good evening. How is everyone this evening? We are doing ok. It was a pretty uneventful day. Rachel gave platelets today~~~I really wish I could do that. I have given platelets twice, but both times I have reacted to the anti-coagulant that they use. So they have told me that I should just stick to giving whole blood. So that is ok. I like giving blood. My son has needed 5 pints of blood, so I appreciate the people who have given it, also. Then we went grocery shopping, ugh. I really hate shopping now. The price of everything is going up, and our income went down! We are really counting on God to take care of us and provide for us. So far He has, but money is just not there anymore. Oh well. Please pray that God does provide for us; thanks. And I hate the fact that the gas prices are going through the roof! Again, oh well. We will do what we have to do for our son.

David is feeling ok. I am still giving him the zofran; he was pretty nauseous this morning. And he is on the GCSF again~~~I hate giving those shots to him. I know he needs them, and they do help, but it is just hard for me to do something that causes him pain. It causes him pain as I give him the shot, and it causes him pain because the GCSF causes bone pain. Grrrr. This is the pitts!!! But otherwise, David is doing ok. THe mouth sores being gone is a huge blessing!! He is enjoying his time at home right now. He really likes the fact that he gets to be home for awhile, and home on a holiday!! Finally! We just plan to BBQ; can't take David out anywhere. He is such a trooper it is unbelievable! He impresses us daily. He is doing well with his weight; he has lost a few pounds, but he just finished chemo so that is kinda to be expected. I made spaghetti tonight, and David ate 2 platefuls! Overall, he is doing very well.

We just learned of another girl who died yesterday of Osteosarcoma. She has an identical twin sister who is fine. She was just 20 years old. I hate it every time I learn of another child dying of this horrid monster. But we are still praying for our miracle.

Well, I need to go. You all have a good evening tonight. Thank you for your prayers for us and for David. Thank you for caring and checking up on him. God bless you. We love you.

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THURSDAY, JUNE 26, 2008 10:49 AM, CDT

You know, sometimes I forget that when you read this, things I say only make sense to me! I know what I mean when I write in here, but you might not. So I need to clarify something. My mom lives two time zones away, not just 2 hours away. Sorry if I made you think she goes to bed at 6:00 in the evening! Thanks for understanding my goofs!

David is doing ok today. He is still nauseous, even after taking zofran. His mouth sore is totally gone, yay! Praise God for that, and thanks for your prayers. Please pray that his tummy settles down and he can feel better. Thanks.

Gotta run~~~~housework! Have a good day. God bless you.

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THURSDAY, JUNE 26, 2008 08:04 AM, PDT

We are home. Yesterday was a very busy day, so no update, sorry. We were told that we might get out of there in the morning, but the doctors wanted David to have a bit more hydration. So once they said he was 'good to go' it was after 12:00. Then they had to hep-lock him. Then we had to unload the hospital room into Bryon's car; his car was in the hospital parking garage, mine was in the Family House garage. Then David and Jennifer walked to the Family House and Bryon and I got his car and drove to the Family House. Then we had to clean our room so we could leave. I had all the beds stripped and the suitcases packed before I went to the hospital, so it was just a matter of dusting and vacuuming the room. Bottom line, we got home around 6:00. We did stop at Subway for lunch, of course. Then when we got home I needed to call my mom; it was her birthday. Well, I had to leave a message because she either was already in bed (she lives 2 hours away from me), or she wasn't home. So I didn't get a chance to talk to her. Then David wanted shredded beef tacos for dinner, so I made them and we ate around 7:00. Then I was tired, so we just kinda spent the evening being lazy and I didn't update. But we are home and all is good.

They are going to set up another CT scan for David on July 18th when he goes back for chemo. I forgot to tell you that I saw David's surgeon; the one who did his lung surgeries. I talked to her about the 2 new spots on his left lung, and she said she is 'concerned' about them, but not 'worried' about them; and I shouldn't lose sleep over them. She just recommends more scans; so that is why we will do more on the 18th of July. We are praying those come out clear. God is in control; has been this whole time; it is just so scary for us. Please pray that his scans come out clear, thanks.

When we go back next I will be taking David by myself; Bryon has class~~~~again! He has school from July 7-11; and David starts chemo on the 11th. So David and I will leave on the 10th to go to Oakland, and Bryon will meet us there after his class is over. Jennifer won't be able to go because she just went with me this time. Rachel wants to go the following week because we also have an appointment with Dr. O'Donnell in San Francisco and Rachel wants to go to S.F. But it will be fine just David and me the next time. But poor Bryon has to drive home alone on Monday the 14th. But I will just follow him, and we have walkie-talkies so it will be fine.

Well, we are very happy to be home. Thank you for visiting David, and keeping up on his progress. Oh, the walking is going quite well! He isn't able to totally walk yet, but he is getting there! Praise God for that. Anyway, I will let you go. You all have a great day today. God bless you. We love you. ((HUGS))

P.S.~~check out the new pictures! I put up some new ones. Thanks

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TUESDAY, JUNE 24, 2008 05:25 PM, PDT

Dr. Singer just came in and told us that we will probably be discharged earlier than we thought, so Bryon wants to go home tomorrow! We don't know what time we will be released; she was thinking around noon. So we could be home before Rachel gets home from work. That would be good. Please pray for a good night tonight, so the drivers will be well-rested tomorrow. Thanks.

I came across another poem the other day. I am going to post it here. The only part that doesn't really apply to David is the 'port-a-caths'~~~he has a broviac. They are pretty much the same; port-a-caths are under the skin, David's is outside the skin. Anyway, here is the poem:

The Littlest Soldiers

The medals on our chestsAre port-a-caths for medsHelmets won't stay onCause no hair is on our heads.

Our weapons of destructionWe take every dayWe fight the battle within usWhile we struggle on to play.

We fight with honor and courageNo marine could do as wellWe are only little childrenLiving in this hell.

So bring on the medalsThe Purple Hearts of WarsThe Gold Cross, The Silver StarTo place upon our scars.

For We are the Children of CancerNo one has fought so hardBut every day we struggle onOur LIFE is our reward.

by Cheryl Jagannathan

Every time I read this it brings tears to my eyes. I wanted to share it with you all.

Well, I need to go. We are getting ready to do dinner. Gotta figure out what we are going to have. I had a very yummy salad for lunch; don't know what I am going to do for dinner. Anyway, you all have a good evening. Thank you for visiting. God bless you. We love you.

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MONDAY, JUNE 23, 2008 09:10 PM, PDT

Well, things are going well here. David is tolerating the chemo just fine. A little bit of nausea, but handled ok with the zofran and ativan. The downside of the ativan is it makes David really sleepy. But that is ok, he is doing fine.

The plans are to be discharged on Wednesday sometime. Then we are going to the Family House to sleep and then leave Thursday morning sometime. We will be home in time for dinner~~~David wants shredded beef tacos for dinner. We can't wait to be home. This is getting harder and harder for us to do. Bryon and I are not spring chickens; we are having a harder and harder time recovering from these trips! But, we do what we have to do. Our son's life is important to us (DUH) and we will keep on doing what we have to do to fight this cancer.

We will get to be home for the Fourth of July! Yay! A holiday we will be home for! The background is in honor of the Fourth of July! We aren't planning on doing anything special, but the day off will be nice spent at home instead of the hospital.

We don't have Autumn again this time~~bummer. But we did get to see her, yay! She is in 5 South (where we wish we were), so we miss her. Oh well. Maybe next time.

I just wanted to update you and let you know we are still here and planning to be discharged on Wednesday. Thank you for visiting and caring about David. God bless you. We love you.

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SATURDAY, JUNE 21, 2008 01:25 PM, PDT

Ok, I need to clarify one thing. The VP-16 (etoposide) runs for 1 hour a day for 5 days. The Ifosfamide runs for 4 hours a day for 5 days. He got the Ifos started at 9:00 last night; and the VP-16 started at 1:00 this morning. And he has mesna running the whole time, from 1 hour before chemo through 24 hours after it ends. It is a bladder and kidney protectant. So he has the mesna and the hydration running all the time. So, that is how it is.

We had some excitement yesterday afternoon. Around 4:00 a 45-year-old woman walked into the parking garage across the street from the hospital, went up to the top floor of the garage, and jumped off! We were told that she had nobody in the hospital, no ID, and no car in the garage. She just had some keys and a cell phone on her. They tried to save her, but couldn't. The coroner picked her up from the ER around 7:00pm. Bryon and I saw the parking garage all blocked and all the police cars, we just didn't know what happened. One of the security guards who knows us quite well, James, told us about it. I thought it was so sad. So that was our excitement for the day.

Well, that is about all for now. We are praying that we can be discharged on Wednesday evening, and then we can spend the night in the Family House and go home Thursday. It would be nice to get a 'good' night's sleep before we have to go home. Please pray that we can be discharged on Wednesday evening. Thanks.

Gotta go. You all have a good day. I will keep you posted if anything happens. Thank you for visiting David. Thank you for your support and love. God bless you. We love you.

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FRIDAY, JUNE 20, 2008 05:00 PM, PDT

We made it to Oakland safely yesterday. I could not update because I cannot get internet in the family house. The trip was uneventful. Jennifer and David rode in the back seat and watched movies all the way. It was a nice drive.

We finally got into a room at 2:15 today!! So we waited around all day waiting for the room. Everybody tells me that this is the 'slow' season~~~yeah, I can tell! They are jam packed here. If I haven't said it before; this hospital is WAY too small!! Oh well, we are in our room, and David is getting hydrated. Oh, the hydration started RIGHT away! It was great! So, we are just waiting for his urine to be at our below 10.10.

His mouth sore is still there, and very painful. The doctors all said that it is not infected or anything, so it looks 'good' as far as that goes. Now it is just a case of waiting for it to heal. Poor guy can barely eat. He is just sticking to soft foods. He ate 2 bowls of clam chowder for lunch today. He is happy that when we get done with this chemo we will be home for 2 weeks!!

Anybody out there want a kitten? Our cat had 5 kittens on Wednesday. Two are kinda black striped with a little white; two are gray (one is light gray); and one is white. There are 3 girls and 2 boys. Any takers? They will be ready to go end of July.

It is so hot here! It is almost 100* now, and it is 5:00!! I don't like the heat. At least the hospital is cool, so far. Sometimes we get hot rooms, but so far we are ok here. We have the same room as last week. Not the best room, but not the worst, either. We will just deal with it. We would have liked a bigger room, being that we will be here for a week and all. That is ok, tho. It is what it is. We got the window, so it is all good.

Bryon got here around 3:45! Yay!! He made it safely and we are together again. Yay!

Well, gotta do dinner. You all have a good night tonight, and I will post what time David starts chemo. Remember, this one is one hour a day (per chemo) for 5 days. Gotta run. God bless you. We love you.

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THURSDAY, JUNE 19, 2008 08:20 AM, PDT

Good morning. Well, we are getting ready to leave for Oakland today. We won't be leaving until around 1:30 or so. Jennifer is coming with us, and she is working half day. So we are leaving after Jennifer gets home and has some lunch. Please pray that we have a safe trip. Bryon will meet us in Oakland tomorrow, yay!! Can't wait!

This chemo that David will be having is the ifosfamide and etoposide (VP-16). These are the ones that really scare me. The VP-16 is the one that they have to take his blood pressure every 15 minutes while he is being infused. They both are for one hour a day for 5 days. So this is our long stay. Hydration before chemo, and for 24 hours after chemo; with a mesna rescue running the whole time. Scary! I have said before that a big fear of mine is putting David through all this pain, surgeries, chemo, and crap that he has put up with for nothing. If he should die anyway, it will suck that he has gone through all this. But my neighbor told me that at least we will know that we did everything we could to save his life. We will have no regrets. But...........it will be sad to know that as parents we did all we could, and it wasn't enough!! But, as I have said before; we are not going to bleed until we are shot! We are still praying for our miracle.

David still has a very painful mouth sore. I have been having him rinse with the rinse, and it helps for a little while. I do have the 'hurricaine' spray; we got it when we were in UCSF to use in David's throat when he had that suction tube down to his belly. He said it feels like I am shooting his sore with darts, but it does help! Thanks Christensen family for the tip. Please pray that the sore just goes away soon.

Well, I need to go get things done. Please continue to check back with David. Thank you for your prayers, love, and support. God bless you. We love you.

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TUESDAY, JUNE 17, 2008 07:29 PM, PDT

Good evening. How is everyone this evening? We are doing ok. We miss Bryon. We hate it when he is at school. We know he needs to do it for his career, but we miss him when he is gone. Poor Rachel won't get to see her daddy for almost 2 weeks!! Oh well, we will get through this; we always have before. It is just hard for me to be a 'single' parent, again, and this time with a sick child! Like I said before, Bryon has spent a LOT of time at school during our marriage. So I have spent a lot of time being a 'single' parent. Sure, it was only temporary, but I still had to do it alone. I am not sure which is harder; doing it now with a sick child, or doing it when I had 3 kids and their ages were 1, 2 and 7. Once I had David, the other kids were 6, 7, and 12; so it was a LITTLE bit easier then. But now, it is hard with a sick child. But Bryon will meet us in Oakland on Friday, so that is only a few days away! Sorry, didn't mean to ramble.

David is holding his own with his weight. Not gaining, but not losing, either. Last night for dinner he wanted taco salad, so that is what I made for dinner. He ate a pretty good sized plate of it. Then tonight he wanted tacos, silly boy, so I made tacos. He only ate 2 because now he has mouth sores. He said is it hard to eat. I have some mouth rinse I got from my orthodontist, so I am having him use that. Poor guy. Methotrexate aways seems to give him the sores. Please pray that the sores stay in his mouth and don't travel down his digestive system. They are still worried about the bowel resection and the sores. Thanks.

Well, I need to go. Thank you for visiting David's site. Thank you for your support of us and him. Thank you for your love. Have a good evening. I will try to update tomorrow. God bless you. We love you.

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MONDAY, JUNE 16, 2008 09:35 PM, PDT

We made it home!! We left at 12:00, and got home at 4:15. We stopped at Subway for lunch, of course. David is up to a 6"!! Yay! Not up to his foot long yet, but we are getting there! It was a good drive home. I didn't want to do it, but I did it and it was fine. It was a beautiful day for the drive!

Another of our favorite nurses, Terry, was the one who discharged us. David had to be <.1 to get out, and he was a little 'behind' on his clearing at the 48 hour mark. So we weren't sure if he would make it. Well, he kinda barely did. His count was .08. I didn't care how 'close' he came, as long as he cleared. And, praise God, he did. Thank you for all your prayers. Now we get to be home for a couple of days. I am going back to Oakland with David and Jennifer on Thursday afternoon. But after the next chemo we get to be home for 2 weeks again! I am so ready for that!

I am kinda at my wit's end with our hospital stays. Rachel stayed last night with David, and the new roommate's dad had the TV on all night! How in the world do we always get these roommates? The patient advocate wants me to call her tomorrow and tell her how this past stay was~~~I am so tired of this. I just don't know what to do anymore. I would really appreciate it if you would pray really hard that we get either a private room or room 5324 window. Please!! I don't see much chance of a private room, so 5324 window would be perfectly fine. I wish this whole nightmare was over! Well, as long as I am wishing for things, I wish this nightmare never happened!! So we would appreciate it if you would pray about our room situation. Thanks.

Well, I am tired, so I am going to close for now. Thank you for visiting. Thank you for your prayers. God bless you. We love you.

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SUNDAY, JUNE 15, 2008 06:23 PM, PDT

Well, David is doing well with this chemo. It did seem to give him diarrhea, but that seemed to resolve itself. Our nurse, Anne, was a little concerned, but since David is fine now, she isn't worried. He is now flushing out the 'meth' from his system. We are praying that we get to go home tomorrow. Please pray that we get to go home tomorrow.

All the other kids came today to be with their dad on Father's Day. They got here around 10:00, and they had to leave around 3:30 or so. It was still good of them to come and spend the day with Bryon. Rachel stayed so she can help me with David tomorrow. Also, she will stay with David tonight so Bryon and I can both sleep good. Bryon has to leave first thing in the morning to go to class, and I will have to drive home tomorrow. It will be nice for Bryon and I to both get a 'good' night's sleep tonight.

Our room situation was ok. David's roommate's mom was very loud and on the phone all day, so pretty much ignored her son. He was about 4, so when he wanted her attention he would just yell louder than her. But, they were fine at night. That is until the boy wet through all the sheets and they had to change all the bedding in the middle of the night. But it wasn't too bad. That roommate left today around 1:00, and David had another roommate by 3:00. Oh well. This one is another small child, they said 5-6 years old. Please pray that we get to leave tomorrow!!!! This stresses David out so much to 'share' his room with a stranger. I understand the problem with the hospital being too small and all, but still. Please pray that we get either a private room or 5324 window next week. We missed another of our favorite nurses this trip. Autumn was in 5 South (the private rooms), so we didn't get to see her. Bummer. We like Anne, but we wanted Autumn. Oh well. Such is life.

Well, not much else to report. I hope all you fathers out there had a Happy Father's Day. Thank you for checking up on David. Please remember these prayer requests. We really appreciate all your prayers. Thank you for your support. God bless you. We love you.

P.S.~~the border is to remind us to Fully Rely On God

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FRIDAY, JUNE 13, 2008 07:32 PM, PDT

Ok, we had the CT scan. Now remember, David is our curve ball thrower. Praise God, the one spot that they saw in April is gone. But.....(you knew that was coming, right?) there are 2 more spots on the lower left lung. Grrrr. So we talked to Dr. Hastings and Dr. Raphael and they said that the tumor board will meet on Tuesday to discuss David. They also are going to talk to Dr. Su (the surgeon who removed the cancer from his lungs) and show her the scans and see what they can come up with. Dr. Raphael said the problem is that the scans in April were supposed to be the post-op baseline. So they did more chemo, and the scans today were supposed to be kind of another baseline. Well, they are getting too many inconsistencies. So I guess we will find out next week where we are going to go from here. He will still have the chemo, but we are not sure if we are looking at more surgery at this point. Please pray that those spots just disappear like the other one did. We are so frustrated with this whole mess. We so want this to be over, and it just keeps getting worse! Not exactly worse, but just no better. Anyway, I just wanted to let you know how the scans went.

We have a not good, not bad room. It is room 5330, and at least we are by the window. But we had to have a chair-bed brought in because the window bed is a really short one~~~almost too short for me (and that is short). But we are only going to be here until Monday, so we will 'tough it out' this time. When we come back next week we will be here longer.........so I hope we get a better room; like a private room maybe?!?! I doubt it, but even 5324 window is better than this. But it is ok; it is what it is! We will deal with it.

Hydration started at 12:45, so we thought chemo would start at 6:45. Well, it didn't. His urine needs to be below 10.10, and the last time we asked it was at 10.75. We need chemo to start so it can be done!! Pray that it gets started soon! Thanks.

Well, that is about it for now. Please continue to pray for our miracle. And pray that the spots will be gone the next time we have a CT scan (don't know when that will be). Have a good evening. God bless you. We love you.

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THURSDAY, JUNE 12, 2008 08:00 PM, PDT

Good evening. We made it here safely. Thanks for your prayers. David rode with me and watched movies the whole way. We didn't leave until around 2:00, then we stopped at Subway (yum-yum) in Fairfield for dinner. Then we got here around 6:45. When we left Carson City, we were freezing (the house was 54* downstairs), and it was 98* in Sacramento! It was 73* in Oakland when we got here. Quite the difference in temps today for us! It was an ok day; except we are here for more chemo, and David doesn't want to be here! Can't say that I blame him. I only want to be here because it means they are helping my son kick cancer's butt!! I just wanted to let you know we made it here safely.

Please remember to pray for David tomorrow. His CT scan is at 10:00. He is a little nervous about the scan; and we are a little nervous about the outcome. We are trusting God that they will come out clear. Please pray that there is no cancer in his lungs! Thank you.

Bryon leaves Monday morning for Belmont (about 40 miles from here) for his class. Please pray that David will flush all the 'meth' out of his system so we can leave as early as possible on Monday. I have to drive home, and I would like to get home before dark. If we could leave right after lunch, we will be home in time for dinner. That would be great! Maybe there will still be some leftover chicken enchiladas. Nah, my girls are gonna eat them all this weekend! I try to cook things for them to eat while we are gone, to make it easier for them. Anyway, please pray that David does well this chemo trip, and that we are able to leave early on Monday. Thanks.

You know, this taking 2 cars really sucks! What, with the price of gas and all! It is the pitts! Please continue to pray for our finances as we deal with this cancer. Remember, my income was totally wiped out! We figure that God knew all this was going to happen, long before David was born, so it is up to Him to take care of us. We are cutting corners everywhere we can, but there is only so much you can cut out! So we would really appreciate your contined prayers. Thank you.

Please continue to pray for Colleen's family. I can't even imagine what they are going through at this time. I don't want to know what the are going through. Thank you for remembering to pray for them.

Well, that is about all that is happening. I will post tomorrow and let you know how the CT scan went. I will let you know what we find out as soon as we know. Thank you for your prayers, love, and support. God bless you. We love you. ((HUGS))

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THURSDAY, JUNE 12, 2008 08:16 AM, PDT

Good morning. We are preparing to go to Oakland today. Please pray we have a safe trip. We have to take 2 cars today because Bryon has school next week. So we are both driving today, David has his CT scan tomorrow, David starts chemo tomorrow, the other kids will come on Sunday to see their dad on Father's Day, they will leave Rachel with us, Bryon will go to school Monday morning, hopefully David will be released Monday, I will drive home on Monday with Rachel and David. Then on Thursday I will drive to Oakland with Jennifer and David for David to start chemo again on the 20th, Bryon will meet us in Oakland on Friday, and we will probably come home on the 26th. Does all that make sense? Please pray for our safety today. I really don't want to drive there today, but I will do what I have to do. I would just like your prayers for us, thanks.

Please pray that the CT scan tomorrow comes out clear. We really pray that the 'suspicious' spot is gone from David's lung. This cancer is so horrible, and I don't want there to be any more cancer in his lung. Thanks for your prayers.

I talked to Chris' mom again. Chris is doing very well. Thank you for your prayers for him. His necrosis rate was 99%. I am so happy for him, and jealous, too. I wish David's was 99%. I am not wanting the attention of David being worse off than Chris, I am truly jealous. But, like I have said before, bigger problems=bigger miracle. When David is healed it will be a bigger miracle. It will be from God, no doubt, not from the doctors or from the chemo. So please continue to pray for our miracle for our son. Thank you.

Well, I need to go get ready to go. I need to draw David's blood and run it to the lab. Please pray that the draw goes well! Again, please pray that we have a safe trip to Oakland. I will post when I can and let you know how things go. Thank you for your support and love. Thank you for visiting this site. God bless you. We love you.

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TUESDAY, JUNE 10, 2008 09:17 PM, PDT

Good evening. David had a great day today. He found out that he doesn't need the GCSF shots anymore! Well, not right now anyway. I am glad, too. It is no picnic having to give my child a shot everyday. So he was extremely happy to find that out. Yay!

We had enough steak fajitas left over for David to have two of them for lunch today. I was happy that he ate that much. But he only ate one taco for dinner. We had Jeremy and Lucy over for dinner tonight. The reason is Monday is Lucy's birthday (the 16th), and we aren't going to be here~~~we will be in Oakland. So we decided to celebrate her birthday early, and tonight was the night. So she wanted me to make Fair tacos and Eclair cake. So, that is what we had. It was quite yummy. So, overall, David ate ok today. We decided to have him drink a milk shake every other night, to see if he can hold his weight without the added 'help'. We would like him to hold the weight just eating 'normally' without the extra calories, fat, and protein from the shakes. Please pray that he is able to still maintain his weight. Thanks.

We are feeling very bad for Colleen's family. We have figured out that of all the children we have heard of and know with osteo, more are dead than alive. That really sucks! We are praying we are NEVER in the same position that Colleen's family is in. To have to watch their child suffer and die is just inhuman! We are so angry! Not at God, but at satan! He is the author of this evil in our children! Boy, do we hate him!! But we are still going to give God the glory, no matter what happens. I know that is easy to say, but we know that with God's help, we can do it. Without the hope of one day being reunited with our loved ones in the presence of God, life is meaningless. We are going to refuse to let satan win. Like I said before~~~if David lives; he wins. If David dies; he wins. Satan has already lost. I just hope and pray that I will still feel the same if David should die. But we are just going to pray for our miracle, and let God work. Thank you for your prayers. As Martin Luther said~~Pray, and let God worry. :)

Well, I need to go. You all take care and have a good evening. God bless you. We love you.

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TUESDAY, JUNE 10, 2008 08:52 AM, PDT

Good morning. Quick update. Back on May 26 we asked you to pray for the family of a little 9-year-old girl named Colleen who was fighting Osteosarcoma. Remember, she was diagnosed just a month before David; she was diagnosed 9/19/07 and David was diagnosed 10/18/07. Well, she died last night. She lost her battle against this horrible disease. I gotta admit, every time I hear of a child losing their battle with this monster it makes me scared about David. I know all of our lives are in God's hands, but I don't want to lose my 'baby'. I don't want to watch him suffer any more than I already have. I want him cured of this disease once and for all. Please, as you are praying for David's healing, pray for the family of Colleen. Colleen may be in heaven with Jesus; but her family has to go on without her. Thank you for remembering her in your prayers also. Gotta run~~~David needs all his meds. I might post again later. Have a good day. God bless you. We love you. ((HUGS))

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SUNDAY, JUNE 08, 2008 06:11 PM, PDT

Good evening. I hope everyone had a good day today. I hope you all had a good weekend. We did. Bryon got home from San Francisco on Friday, and it is great to have him home. The week went by really slow for us; and I am glad it is over.

We had a pretty busy weekend. We weeded the backyard, seeded the bare spots in the front yard, and did a few things around the house. Then on Sunday we went to church, and celebrated Father's Day today because we will not be home next week. You know, I love it when all 7 of us get together. You need to understand that that doesn't happen often. You see, Jeremy is married (to Lucy) so they have their own life and I am happy for them. Then, we spend so much time in Oakland with David that we rarely see Jennifer and Rachel. It is usually just us and David. When we are home, the girls are sometimes off with their friends (which is a good thing and we encourage it), so we don't always see them much. So, you see, when we can actually get together, all 7 of us, it can be such a rare occurrence that I get excited about it! And David loves to have all his siblings around him.

We go to Oakland on Thursday for chemo on Friday. David has another CT scan on Friday at 10:00, they want to check on that suspicious spot on his left lung. We are praying that the spot is gone! We don't want it to be another cancer nodule. Please pray that it is gone. Thanks.

Well, that is about all that is happening here. I will post again soon. You all have a good week. God bless you. We love you.

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THURSDAY, JUNE 05, 2008 04:50 PM, PDT

Good afternoon. This is going to be a rather long post, so please bear with me. I need to tell you all something. The Bible verse that says 'you meant it for evil but God meant it for good' is what I need to talk about. You see, I have to confess that a while ago I emailed someone and said things I shouldn't have said about my mother. God has been talking to me a lot these past couple of days, and I have learned that I have issues with pride. I am not offering excuses for what I did, just an explanation. I felt I needed to 'plead my case' and have everyone like me. Well, I was wrong. I should never have done that. It doesn't matter what other people say or don't say about me; or what they think about me. The only One who really matters is God, and how He thinks about me. Now, onto the reason for the verse. My mom found out about what I had written because someone hacked into my email account and read my emails, and either told my mom or showed her what I had written. The verse comes in because they meant it for evil, but God meant it for good. God wanted me to get 'caught' and to be accountable for my actions. I am so glad that I got 'caught' because now I can be reconciled to God. I was wrong to do what I did, and that person doing what she did is how God turned it to good. Now, the hurting my mom part is not good. I have apologized to her, and I am truly sorry. I hope to someday be reconciled to her. I don't blame her if she doesn't forgive me; I know I was wrong. I truly love my mom, but I know she is going to need time to heal. I really hope she can forgive me. I, again, will not offer any excuses, that will be just my pride and needing to 'plead my case' about why I did that. All I am here to say is that I was wrong to do what I did to my mom, and I wanted to let you all know how God is working in my life. You know, chastisement from God really hurts, but I know I needed it! I want to be close to God, and I know my sin was a barrier. Now all the walls are down (hopefully) and God and I can have better communication. I am so glad that God forgives us when we confess our wrongs, and I am so glad that He removes our sin as 'far as the east is from the west', and I am so glad that He 'remembers them no more'! Praise Jesus!

I was listening to my Women of Faith CD this morning, and the first song on the CD says, 'Trade your heavy heart for a heart of joy. Celebrate what God has done.' My heart is still heavy over the pain I have caused my mom, but I am so thankful to be reconciled to God that I am going to let God take care of everything else. I celebrate what God has done; He has forgiven me! For more sins than I can count! Praise God with me today. Don't worry, I know I am not 'off the hook' with my mom. Please pray that she will one day forgive me~~in her time. I will not rush her. I just want her, and you, to know that I really love her.

David had a good day today. He focused and got quite a bit of school work done today. He is such a great kid! I am so proud of him. I am proud to be his mom. In one of his subjects (he has a Christian curriculum) they asked the question, 'what is something you need courage to do?' And he answered. 'beat cancer'! No child should ever have to have that be an answer to a question about their life! I hate that evil in my son's body! We are still praying for our miracle!

Well, I need to go. I needed to write this while God was speaking to me. Have a good evening. I will write again tomorrow. God bless you all. We love you. Thank you for listening and for being there. ((HUGS))

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TUESDAY, JUNE 03, 2008 03:14 PM, PDT

Hi, ready for a second update? This isn't really an update, per se. It is just a prayer request. I have been reading other CaringBridge sites from our osteo friends, and a prayer request came to mind. Please, please pray that we can get David cured here, at Oakland Children's Hospital. If we run out of options here, we might have to do what other people have done, and that is go to MD Anderson in Houston, Texas. You see, that would be extremely difficult for us to do. I would have a place to stay there; our friends from Texas said her parents would lend us their trailer to park at the trailer campsite (apparanetly really close to the hospital). But I would have to do it alone. Bryon could never get that kind of time off of work again. He took 6 weeks off for me when I had surgery last year (9 weeks before we found out about David); and they have been wonderful about letting him work from the hospital when we are gone. But we know it would be too much to ask for them to let him work from Texas indefinately. There are times he needs to be in the office. Or times, like now, when he has school. I would be doing it all alone. There are a few children on our osteo support group website who are going to MD Anderson, but they have more help. I know that if it came to that God would work out all the details, I just don't want it to come to that. The chemo David is on now is standard protocol for osteo, so I know David is getting the same thing here that he would get in Houston. It is just that MD Anderson is a lot bigger, and they have more resources. They might have access to more and/or different experimental drugs; again, they are a LOT bigger! We are praying for that miracle from God, but we also need to be realistic when it comes to this cancer. There could be a point in time where Oakland Children's Hospital no longer has what we need. I pray that doesn't happen, but you never know. We just need to be prepared for that scenario. We just really, really pray it doesn't happen that we need to go to Houston! Please join us in this prayer. Thank you.

God bless you. Thanks for reading.

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TUESDAY, JUNE 03, 2008 01:06 PM, PDT

Good afternoon. David had an orthodontist appointment today. It went well. We are still in a kind of 'holding pattern' with him, Dr. D'Ascoli doesn't want to put David through any more trauma. The chemo is affecting David's teeth some with some discoloration, but not too bad.

Well, that is about it. Have a good day. God bless you.

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MONDAY, JUNE 02, 2008 11:05 AM, PDT

Good morning. I hope everyone has a good day today. Thank you to all our OS friends who have signed David's guestbook. We are in this battle together. We will fight it together. And, God willing, we will win it together!! Yeah, the experts say that having a child with cancer is one of the most severe stressors in a parent's life! Really? Can we all say "DUH" together? We could have told them that. We watch our children suffer daily! It tears our hearts out!! We hold onto hope, we just know that there always isn't a lot of hope when it comes to Osteosarcoma. Sometimes we have to look into our children's eyes and tell them they are going to die. Sometimes we have to watch them die a slow, painful death. But God can work miracles; He does it every day! And we are praying for ours! And we are praying for all the other OS families out there.

Well, as usual, I gotta go. Have a good day. God bless you all.

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SATURDAY, MAY 31, 2008 07:44 AM, PDT

Good morning. I have been cleaning house this morning and listening to my 'Women of Faith' CDs and a thought struck me anew. Isn't God's grace and mercy wonderful!? God is a forgiving God, and for that I am thankful. It doesn't matter if you are a mass murderer or your sins are 'small', they are all forgiven. EVERY sin ever committed nailed Jesus to the cross~~~the 'big' ones and the 'little' ones alike. God does not put a degree on sin; they are all the same in His eyes. I know what God has forgiven me of, I don't need to be reminded, and I praise and thank Him! I am thankful that God is God! Because I know I would NOT be forgiven by people. But remember, your sins nailed Jesus to the cross just the same as mine did~~but Jesus hung there willingly out of His love for ALL of us! Isn't God an awesome God? Thank you Jesus!

So, that being said, I would like to address this next paragragh to my mother and sisters. I will address this publically. I am truly sorry for everything I have ever done to offend you, hurt you, and cause a barrier between us. I am sorry for my part in the distance in our relationship. I am sorry for the sins I have committed against you. I am publically asking for your forgiveness. Thank you.

I hope everyone has a good day today. Thank you for visiting. God bless you. We love you.

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FRIDAY, MAY 30, 2008 10:13 PM, PDT

Good evening. Today was a busy day. We had some errands to run; Bryon is off on Fridays; and David came with us. We went to Walmart, Bryon had to have the oil changed in his car before he goes to San Francisco, and David bought himself a new game for his PSP. We took him to Game Stop and he bought himself a new game for his Gamecube. Then this afternoon Jennifer took him to work with her. Her fellow employees really like seeing him. The ones that are praying for him like putting a face to a name. And they all just like to see him. It is really nice that they let him come to work with her. He sits there and does his school work; and he is a great kid, never causes trouble. So it was a good, but busy day for him.

Things are going ok for him. He is feeling somewhat better. I am still giving him the zofran, so that is keeping the nausea at bay. He is still taking a LOT of medicine, but he is getting used to it. On a good note, for him anyway, he gets to skip his GCSF (the shot I give him) tomorrow. His counts are doing well, and Connie is afraid that if he gets the shot when his counts are high, then it will cause bone pain. We don't want that! It took us a long time to get him out of pain back when he was first diagnosed, and we don't want to cause him more pain. So he gets to skip tomorrow, get the shot on Sunday and Monday; and draw his blood on Monday and see where his counts are. We probably could go to San Francisco with Bryon; but, again, David just wants to be home. We don't blame him one little bit! So he is a happy camper that for one day he doesn't have to have a shot! I am happy, too. I don't really enjoy giving him those shots!

I think I need to remind you all, again, that David does NOT read this part of the site. Anything I write here in this journal does NOT get read by him. To put your minds at ease, I tell him how much others love him. He knows all about those that love and care about him. This is one child that is not lacking for love! Nothing needs to be said to him, either by 'snail mail', email, or guestbook about his mother (me) telling him people don't love him. I have NEVER told him someone doesn't love him. So rest assured, he knows he is loved. You don't need to reference what I write when you write to him, it only confuses him. He has no idea what I write, so please don't worry about convincing him he is loved; he knows. He also knows that God loves him and whatever happens to him, God is in control.

We have told him about the little 9-year-old girl who is dying, and we have talked to him alot about the possibility of him dying. He is a very quiet child; but he knows he can come to us if he ever has any questions. We have never told him that his chances are only 30%-40% of living 5 years; but we have told him that he needs to fight this cancer. He knows that he will go to heaven and be with Jesus and Poppa if he dies, so he is not really scared. But, of course, he doesn't want to die. Please continue to pray that he survives this! Of course, the Lord coming back would be the best case scenario! We know that this is a day-to-day battle; and we will fight it as long as we have to. There is another woman, her name is Susan, who is also out of options and has about 2 months left to live. When we see David doing so 'good' it is easy to forget how aggressive and deadly this cancer is! So you see how much we need your daily prayers. Of course, 'good' is a relative term here. He is never 'good', just some days are better than others. We really covet your prayers for our son. No person should have to go through what he is going through, especially not a child!! Life is so unfair. And sometimes it just plain sucks! This kind of stuff happens to someone else; it really sucks being the 'someone else'! We just know that whatever happens; God will be glorified! God gave us this precious child, and we thank Him daily for all of our children. We know all of our children are on loan to us, we just want that loan to last a long time!! Anyway, please continue to pray for David and for us.

Well, I need to go. You all have a good evening. Thank you for visiting this site, and for caring about David. Thank you for checking up on him. Thank you for loving him. God bless you. We love you. ((HUGS))

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WEDNESDAY, MAY 28, 2008 08:23 PM, PDT

Good evening. David had an ok day today. I had to leave him alone for about an hour today, I had to get my teeth cleaned. It only took 30 minutes (I try to take good care of my teeth), but I was talking to the ladies at the front desk, so I was gone an hour. But he did ok, just did school while I was gone. He is still feeling somewhat nauseous in the mornings, but I just give him the zofran and it helps.

Bryon has to go to San Francisco next week for work; and we thought about David and I going along. Well, that isn't going to work for 2 reasons. #1~~David's counts will be too low for him to be in public; and #2~~David wants to be home! Can't say that we blame him; so we will be without Bryon for the week. It would have been fun to go to San Francisco for 'fun', but it is not to be this time. Maybe when this is all over (whenever that will be)!

Our weather has been beautiful! David has loved all the rain, thunder, dark clouds, and wind. He can't be outside in it, it is too cold. But he looks outside at it. It isn't the same as being outside and breathing the fresh air, but his health is #1 priority.

Well, that is all that is happening. Thank you for visiting and checking up on David. God bless you. We love you.

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TUESDAY, MAY 27, 2008 08:33 PM, PDT

Good evening. David had a good day today. He was nauseous for part of the day, but otherwise he did ok. He ate pretty good today. For breakfast he had 2 scrambled eggs with cheese and a piece of whole wheat toast. He had milk with instant breakfast in it to drink. For lunch he had a grilled cheese sandwich. For dinner he had 2, yes count them 2, plates of spaghetti and some corn on the cob. Bryon had to cut the corn off the cob; David can't eat that with his braces. But he did pretty good, for him. I am going to make him a milkshake every night to help him keep the weight on. The bad part of the day is I have to give him the GCSF shots again. They anticipate his counts being in the toilet again, so we have to do what we have to do to make sure they don't go too low. I have to make sure I take his temperature every day, too. If he starts to run a fever we have to take him to the hospital. Please pray that he doesn't run a fever!

Our weather is beautiful! It rained today, with thunder! I have had a fire in the fireplace all day. It is cold and windy and beautiful! It is the end of May, and we are still needing a fire! It is great! The hot weather will be here soon enough. We are enjoying this while we can.

Well, that is about it for now. Thank you for your support of us during this time. Thank you for your prayers. God bless you. We love you.

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MONDAY, MAY 26, 2008 10:16 PM, PDT

We made it home. We got home around 5:30 tonight. We are really glad to be home. The only thing is, I have had 2, yes 2, migraines today. I took some vicodin and I will go to bed soon. I tend to get them when I am extremely tired, as I am now. This was a bad weekend for sleep, so I am suffering the consequences now. But hopefully the pain will be gone tomorrow, just the residual pain that lingers for a day after my migraines. That pain is only when I cough, sneeze, bend over, etc. I plan on taking it really easy tomorrow and get some much needed rest.

David is very glad to be home. And, on a positive note, he is home without the feeding tube. Autumn (yeah, we got her for today, yay!) replaced his tube; it has to be replaced every month; but it just didn't want to cooperate. It was really irritating to David's nose, so we think that maybe it was torqued inside somehow. So we removed it on a trial basis. If he can maintain his weight he will not have to have it replaced. He has the 2 weeks at home to try to maintain his weight. If he loses, then he has to have the tube put back in. Please pray that he can maintain (or gain) his weight. Thanks.

There is another family on our support group website whose daughter is losing her battle with this monster. She is 9 years old, and they say she has 2 weeks to live. Colleen was diagnosed 1 month before David. I know that all of our lives are in God's hands, but I still get scared for my son's life. I am so glad that God knows me and knows how much I love Him and want to trust Him. I am trying to focus on Jesus, and ignoring the storm around me. Every time I hear about an osteosarcoma child dying I get neaseous! I hate my life! I hate that this monster is in my son's body! Please continue to pray that he will be healed (on Earth) and never have to deal with this cancer again!

Also, please pray for the Moore family that God will give them strength and peace during the final days with their beautiful daughter.

Thanks.

Well, I need to go. You all have a good night tonight. God bless you. We love you.

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SUNDAY, MAY 25, 2008 06:44 PM, PDT

Well, our roommate did NOT leave!! It is interesting, there has been NOBODY here to see him. Ok, he is 18, but still. Kinda sad. But, let me tell you sumthin, I am with David tonight, and I will complain if he is on the phone past midnight and if the TV stays on! This kid sleeps all day and thinks it is ok to stay up all night! Well, we don't work that way. I am so frustrated with this whole situation! Oh well, what can I do?

Dr. Hoppe was in today and she said that David's ifosfamide will finish tonight at 11:00, then he needs to hydrate over night, and we can go home tomorrow!! Please pray that we can get out of here before noon; that is our goal! We want to get out of here soooo bad. It is interesting; the desire to 'blow this popsicle stand' is related to the roommate and/or room we have. When we are in a private room, it is not as bad if we have to stay longer. Or when we get a good roommate, like Chris, we don't hate it here as much. But, when we get roommates like this kid, WE WANT OUT!!! Of course, we always prefer home, but the room we are in can make a bad situation worse! Anyway, please pray that we can go home early tomorrow. Please pray that Bryon gets a good night's sleep in the Family House tonight. Thanks.

Well, that is all for now. I hope you all have a good Memorial Day tomorrow. David's background is in honor of the holiday. Thanks for your prayers, support and love. God bless all of you. We love you.

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SUNDAY, MAY 25, 2008 08:59 AM, PDT

Good morning. Bryon was with David last night and got little sleep. Partly because they have to pump David with so much fluids he pees all night! Like every hour or so he has to pee. Then, we have another of 'those' roommates! Remember a few months ago I wrote about a kid whose mom had the TV on all night? Well, this kid is 18, and HE had the TV on all night!! He talked on the phone until 1:00am; and was/is very rude to all the nurses and pca's. He was rude the other night, too, but I just figured he was tired and they were 'bugging' him. No, he is just rude! He is supposed to go home today. I hope he does! I understand that the hospital is just not big enough, but I get frustrated when we get the rude roommates!! We try to keep to ourselves and don't complain about things, and we try to be respectful of the other person in the room, it is just hard when they act like they are the only ones in the room! He talks on the phone, loudly, and his TV is so loud that I could here his TV when I had my earphones on watching a movie with David yesterday! Keep in mind, these TVs are about 12" from the child's face! They are individual TVs (which is VERY nice) that swing in front of each child. I don't know, maybe he has hearing loss or something. Anyway, I had to vent. I WANNA GO HOME!!! We are so everlasting tired of being in this hospital! We are getting fantastic care for our son; which is the point anyway; but we are tired of being here. I wish we could get the same nurses all the time (Chuck, Autumn, Anne, and Terry) and we could get a room without a roommate! Oh well, this is teaching us something, I guess. We are trying to be patient through it all. Please pray for us!!

David is just plugging along with this treatment. He is still receiving the Doxorubicin (it runs 48 hours straight) and will finish tonight around 7:00. The Ifosfamide runs for 4 hours at a time (7:00pm-11:00pm) for 3 days; so his last dose of that will be tonight at 7:00. We are planning on coming home tomorrow, I hope those are God's plans, too! Then we get to be home for 2 whole weeks!! Whoo-Hoo!! I can get some housecleaning done! Yay!! David can get some serious schoolwork done (hopefully). I might not know what to do with myself for 2 weeks at home! Well, besides a LOT of housework! Well, it needs to be done. Rachel said she was cleaning my pantry yesterday~~she musta been bored! (Thanks, baby girl!) Anyway, David can't wait to be going home. It will make him smile again!

Well, that is all that is happening right now. His knee is doing really good, it just makes a strange sound when he bends it. When we go back to Dr. O we will ask him about it. David's leg turns a weird reddish purple with blotches when he stands for awhile; Dr. O said that is because there is poor blood return in that leg; but it will get better as David builds up the muscles and uses that leg more. Oh, another funny thing I just remembered Dr. O said. When we told him that they are throwing 5 chemos at David now, he looked and David and said, "look out for the kitchen sink"! So true! Well, whatever it takes to kill this monster in my son! Sorry to sidetrack there.

Have a good day. If anything earth-shattering happens I will let you know. Thanks for reading and catching up with David; and thank you soooo much for your encouraging words to him. Nice hearing from you, Danna. God bless you all. We love you.

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SATURDAY, MAY 24, 2008 09:42 AM, PDT

Quick update #2~~I don't know how old David's roommate is, but it is another sickle cell patient; poor kid! Have a good day.

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SATURDAY, MAY 24, 2008 07:58 AM, PDT

Here is the update for this morning. David had an ok night last night. He did get a roommate, at 4:00 in the morning. And were they ever noisy! Plus, the kid (I don't know how old he is, but at least a teenager) wanted the light on~~~at 4:30 in the morning!! He finally turned it off about 5:30. But they were banging drawers, dropping everything, etc. So he is sleeping now; so is David. Then the nurses kept coming in because David's call button was acting up. It would just light up without us pushing it. They would cancel it and it would light up again, all on its own! Finally, at around 6:00, the maintenance guy came in and fiddled with it, and so far so good. It was a really rough night. I have been up since 4:00, so I am tired. I can't wait until this chemo is over~~we get 2 weeks at home! Whoo-Hoo!!

Last night was also a 'milestone' for David. It was his 100th night in the hospital. He has spent well over 200 days, but it was his 100th night~~since October 12, 2007. That is why I have said this is our 2nd home! We spend almost as much time here as at home. There have been more days than nights because we could be here for 4 days but only 3 nights were spent sleeping here. Yeah, we are ready to have David cured and go on with our lives. He has said he does NOT want to be a doctor when he grows up. He does NOT want to spend any more time in a hospital when this is all over. Can't say that I blame him for that!! Poor kid. I know, this is just a chapter in his life; but it sure seems like an awfully LONG chapter!! I guess in the grand scheme of things it isn't that long. But when you are going through it, it seems like it is going to last forever!! Thanks for being there for us; those of you who are. We really appreciate it.

Well, that is about all that is happening now. We would covet your prayers for us during this time. We would also covet your patience as we go through this hell. Please bear with us. God bless you all. We love you. <><

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SATURDAY, MAY 24, 2008 06:42 AM, PDT

P.S. from last night's entry~~encouraging words to me are always welcome. I am doing my best to stay 'upbeat' at a time like this; so words of encouragement are like a breath of fresh air to me. As far as other things that have been said to me here, email me with criticism. Thanks.

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FRIDAY, MAY 23, 2008 09:10 PM, PDT

Ok, to anyone and everyone who I have offended on this site, I am sorry. I have just been saying what is on my heart, and, unfortunately, I have been reacting to things that have been going on 'behind the scenes'. I am not going to offer any excuse or explanation. But I am going to say that if you don't like what I am saying, you are free to e-mail me; my address is on this site. Please do NOT use this site to blast me and what is on my heart. The journal entry is for ME to write about David and what is going on during this nightmare time in our lives. The guestbook is for YOU to write to HIM (not me) and encourage HIM!! Thank you for your understanding. Anyone in my position understands that this is a VERY emotional time, and we tend to overreact to outside problems and say things that maybe shouldn't be said. I would like to add that 'he who is without sin can cast the first stone'. I ask for your forgiveness. Thank you.

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FRIDAY, MAY 23, 2008 07:27 PM, PDT

Good evening. I am sorry I haven't updated until now. We got up this morning and came to the hospital and had breakfast in the cafeteria. Then I called the 5th floor to tell them we were here and they said to go register and then come on up. Well, this one woman in the registration area does NOT like us to be there; with a cancer child and all. She said that is where all the 'drop in' sick kids come, and she does not like the cancer children being there (we do tend to agree with her, kinda stupid system). So she told us to go straight upstairs and she would send the paperwork up. She has said in the past that at the very least the hospital should have masks for the kids to wear down there. Oh well, it all worked out.

We did NOT get a private room, nor did we even get a window bed. We got the same room we had when we first met Chris. It was very depressing, the people in the window bed kept all the blinds closed. David was very sad and depressed. BUT.......his roommate left around 4:00, so we got moved over to the window. David is much happier now. We will not ask for a private room; as long as David has a window he can see out of, he is ok. As ok as he can be with poison running through his system! So thank you for your prayers, but God said 'no' to a private room. That is ok, we will just deal with it. At least we had a friendly face, Anne was our nurse. She was one of the first nurses we had when David was diagnosed. She is the one who trained us on the blood draws and flushing David's broviac. So it was an ok day, all things considered.

David is doing well, so far. They are really good at keeping the nausea at bay. For now we have a BMT (Bone Marrow Transplant) dressing on his broviac site. I guess we are going to try to figure out this weekend what to do once we go home. Poor guy. His skin is just so sensitive that everything breaks it out over time. Oh well, we will just do what we have to do.

Right now David is getting the Doxorubicin, the ifosfamide, and the Mensa (that is a bladder protectant). We really hate seeing that poison going into our son; but what choice do we have? Of course, we have the choice to not give him the chemo and just let him die~~~that is NOT an option! If he dies, he will die fighting! And through it all; somehow; God will get the glory; NOT satan. David is in a win-win situation. If he lives (and we are praying he does), then he wins. If he dies (please, God, no), he will be in heaven with Jesus, so he still wins! We do have some peace knowing that.

Well, I hope you all have a good evening. I am staying with David tonight. I really hope he has a good night. You all take care. Thank you for checking in on David. God bless you. We love you.

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THURSDAY, MAY 22, 2008 07:28 PM, PDT

We made it here safely. It was snowing in the mountains, but it was beautiful. I dozed some of the time, we had been up since 4:45am so I was tired. Bryon takes Vivarin when he drives; I can't because it is just caffeine and I can't do caffeine. So I just doze for awhile. We are still pretty tired, but we made it here safely. We left home around 1:30 (Bryon worked this morning) and we got here at 6:00. I gave David some zofran, so he did ok. He just chomps the peppermint mints and he does fine. He doesn't want to be here, but he knows he needs to be. He is such a trooper. I feel so bad for my little boy. I wish he wasn't going through this, but I know God has a reason for it. We just don't want him to have to go through all this garbage for nothing!! But we know that God is in control, and all of this will bring glory to Him, somehow. We still say that all David's problems just mean a bigger miracle!! And that is what we are waiting for!

Well, I heard from Christopher's mom, Nita. I asked you to pray for him; his limb-salvage surgery was on Monday. I was going to call Nita and see how he is doing, and I lost her phone number!! I was so mad about that! But she called and said Chris is doing great! He should be going home either Friday or Saturday. His implant is only 6", where David's is at least twice that! Nita said that Chris is doing wonderful; praise God for that! They are a wonderful Christian family, and Chris is a sweet boy; he will be 16 in July. They were one of 2 of the best roommates David ever had! So thank you for your prayers. Chris has no cancer in his lungs, they are really blessed in that. But, again, more problems (like Davids)= bigger miracle!

Wendy, at one point in time you said you lost your whole family over this cancer in your daughter; and you and your mom are not in contact. Well, I am 100% where you are~~~I am walking with God and I have forgiven my mom for the things she has said and done. I love my mother, I just know how she is and I cannot deal with that right now. All of you who are in this same situation know that we have so much on our plates at this time. We need to be surrounded by the people who understand and/or love us and support us. Not many people understand, but many can still love and support us anyway. We don't have the energy to fight for anybody besides our child. I am sorry that some people just don't get it. They say they want to know what is going on, but they won't take the initiative to find out, they think we should do it! They won't call us, they want us to call them. Sometimes it is all I can do to update this, and I still get criticized for what I write. I am sorry if I have offended anyone by writing too much about me, but this is my journal! I have 'warned' you many times that I am writing my thoughts and feelings during this nightmare that is my life!! Please bear with me. Thanks.

David is losing his eyelashes now. His eyebrows are not as bushy as they used to be, and his eyelashes are very sparse right now. And his bald head is soooo soft! It just breaks my heart to see what our son has to endure. But, again, he is such a champ through all this. He takes so much of it in stride. Sure, he cries and complains a little when we leave home; but then he bucks up and just does what he has to do. I am so proud to be his mom. It is an honor to be his mom and take care of him.

Please pray for us tomorrow, that we can get a private room. David gets so stressed out when he has to share a room with a 'stranger'. Also, please pray for us as we talk to the doctors about his broviac site. He has another rash of blisters around the site. He has such sensitive skin, and we haven't found the right dressing that won't break him out. The site HAS to be covered; the broviac leads right to his heart. Things work for a while, then he breaks out again. And it itches like mad! I have hydrocortisone cream to put on it, but then the dressing won't stick! GRRRR. It is really frustrating. Please pray that we can find something that works.

We have a major praise!! David's bed sore is healed, on the outside anyway!! Praise God for that. The wound care specialist said that it was such a deep tissue wound that it will take months for it to heal completely, but it looks good now! Yay!

Well, I need to go. You all take care and have a good evening. Thank you for your love, prayers, and support. God bless you all. We love you.

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THURSDAY, MAY 22, 2008 09:38 AM, PDT

Quick update~~~it is snowing!! Of course it is!! We are going to Oakland. We never got used to going without storms anyway. This should be fun. Well, please pray for us as we go. I will update tonight and let you know how the trip went. Thanks. God bless you. We love you.

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WEDNESDAY, MAY 21, 2008 02:18 PM, PDT

Good afternoon. How is everyone today? We are doing pretty good. Debra and Caroline came over this morning; wow, was it good to see them. It has been a long time since I have seen them. It was before David was diagnosed, so it has been at least 7 months. Caroline has gotten bigger, but she is still a sweetie. Very cute little girl. It was really great to see them. Debra, thanks for coming!

We are really glad we live in Northern Nevada; the weather keeps us guessing all the time (just like David)! I heard it was really hot last weekend (we were in Oakland); and on Monday when we came home it was pretty warm. Well, yesterday it was really windy all day (that's nothing new), and last night we had a beautiful thunderstorm with lots of lightning and thunder and rain! It poured last night. And today I have a fire in the fireplace because it is a chilly day! I think this is the only place where you can have swimsuits and sweats in the same laundry load!! But I love it! It is very unpredictable, and I love the weather here. I am so thankful to be living here. I am glad that God made this place so fun!

David is doing ok. He doesn't want to go to Oakland tomorrow, who can blame him? I don't! One would think that after all this time it would get 'easier' and become a 'habit'; but it just gets harder and harder to go! And not just for David, for all of us! But we will continue to do what we have to do. We are not sure how long we will be there this time. But this is a long weekend, and we will be in the hospital for yet ANOTHER holiday! Lets see, that makes........5 holidays (counting his birthday) that have been spent in the hospital in 7 months. I think he will be home for July 4th, though. Maybe we can go camping again; we'll see. David is already saying he wants to go camping again. Of course, he was saying that the day after we got back from last time! Silly boy.

David is getting some mouth sores, so please pray for those to go away. Methotrexate is one of the chemos that gives him the mouth sores. We just have to be so careful, because they don't want the mucositis to go down his digestive tract and damage his bowel resection. The surgeon told us that it is going to take many months for that to heal; his healing abilities are compromised because of the chemo. So please pray that his bowels stay healthy. Thanks.

Well, I do need to get some housework done. Boy, it sure would be nice to have a maid! But I really don't mind doing the housework; it just never ends! I am only home long enough to do laundry, repack, and do a little shopping so there is food here for my girls! Living out of a suitcase is the pitts! I am getting really tired of it, as I am sure you can imagine. Those of you who have been where I am (or are still there) know exactly what I am talking about! But I know that this, too, shall pass. I just can't wait until it does. I feel like we are 'wishing our lives away', but how can we help it? We just want this time to be behind us! I know; in time.

Anyway, I really do have to go. You all take care and God bless you. I will try to update tomorrow before we leave for Oakland. Have a good evening. We love you.

P.S.~~Autumn, if you are reading this, I forgot to ask you if you had a good birthday. Did you? Hopefully you will be our nurse when we are there this next trip! Take care!

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MONDAY, MAY 19, 2008 09:26 PM, PDT

We are home!! We got out of there around 11:30. David's level was .06. So we got to go home! The doctor said that all the propel he drank paid off! Jennifer followed us home, and we got home a little after 4:00. It is sooooo good to be home, even if it is only for a few days. David is very happy to be home. I gave him some zofran because he was feeling sick, but we made it home without him throwing up! Yay! Needless to say, we are exhausted! I stayed with David last night and he was up every 1 1/2 hours to pee. It was a long night for me. We hope to spend tomorrow resting. Then I will call our friends and see if they can come over on Wednesday. We are going to go back on Thursday and stay at Family House Thursday night. Then we can get started early Friday. That is the way we are going to do it as often as we can. The pharmacist came to talk to me today and she told me that the way we did it this time is the best way. And that was having everything ready the night before. So......that is the new way.

You know, it was really good to have Jennifer there visiting David. I feel bad for David. I see a lot of visitors for the other children at the hospital. I see a lot of grandparents visiting their grandkids. Too bad my son doesn't have a grandparent that cares enough to come see him. My children only have one living grandparent, my mother, and she won't even read this site because she said it is all about me (Kristi). Really? Does anybody else see that? I thought I was updating you on David. Yes, it is a journal, so I write my feelings; but it is all based on David! It is all based on what is happening in our lives right now based on David. She said she is tired of hearing about me. I would think she would care about how I, her daughter, was doing with this whole thing. But obviously she doesn't care about me; so therefore she doesn't really care about David. The only family member I have that cares is my older brother. That is one of the reasons I really appreciate how much you all love him and care about him. I have had people tell me that they would do whatever it took to be there with their grandchild; and I know my dad would be here with David. Oh well, thank you for reaching out in love to my son. I appreciate it more than you know. I will always be grateful to those of you who have loved us and David through this time.

David is walking; ok, hobbling, around without his crutches. Not for very long, his legs get really tired, but he is trying to do as much as he can without his crutches. He is able to put 100% weight on his leg; it just isn't very strong right now. But he is working really hard at getting his strength up. He wants to walk sooooo bad!!! He hasn't walked in 8 months! But with his added weight he is getting stronger and is really motivated to walk! He is feeling a lot better now that he is up to 112 pounds! And he is actually getting hungry! So that is just a wonderful thing. He is really tired of the hospital food, though. We spend more money now because he wants something from the cafeteria, not from his menu, so we buy it for him. Oh well, it is only money! He got his Subway on the way home today. He is back up to a 6", no longer a 4". We can't wait until he is back up to his footlong! Hopefully it won't be too much longer until he is. But it was good to have his Subway fix today.

Well, that is all there is to update. David is in the shower, and as soon as he gets out we have to set up his nighttime feed. You all take care and have a good night. Thank you all, again, so much for your support and love for us and David. God bless you! We love you.

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MONDAY, MAY 19, 2008 06:48 AM, PDT

Quick update for now~~~please pray for Christopher Hunt: he is David's last roommate. He is having his limb-salvage surgery today. I am not sure what time, but I think it is sometime this afternoon; but it could be this morning. Dr. O told us on Thursday that he (Chris) only has to have a 6" rod put in his leg because his tumor is so small; lucky ducky! I just ask that you please pray for him today. I will post later when I know the results of David's blood draw. The nurse drew his blood about 25 minutes ago, so hopefully we know before 10:00 what it is. Thanks. Be looking for the update! We want to go home!

Thank you so much for your prayers, love, and support. God bless you.

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SUNDAY, MAY 18, 2008 10:55 AM, PDT

Sorry I didn't update yesterday, not much to update. David had a rough day; he was pretty neausous all day. For dinner he did manage to eat a little bit of salad, but that was all he ate all day. He spent the better part of the day laying on the window bed. But he is doing better today.

Funny thing happened this morning. Dr.Styles was in here and she was listening to David's heart and lungs. Well, David was laying on his back with his hands over his head, and as she was listening to his heart, David lowered his right arm and smacked her in the head! She said he has a heck of a right hook! It was pretty funny. Oh, I guess I should tell you that David was asleep at the time, so he didn't even know he did that. He laughed when he found out he did that to her. She laughed; she thought it was pretty funny.

It looks like we are on schedule for leaving tomorrow. At 24 hours the level of meth in his blood needs to be <5.0 and his was 4.26. At 48 hours the level needs to be <0.5 and his (at 36 hours) is 0.47. So when they draw labs tomorrow, we are praying it is less than the .1 it needs to be so we can go home!! Please pray that we are able to go home tomorrow.

Sorry, there was something to update yesterday. Jennifer came here with a friend of hers. They are going to a concert in San Francisco tonight, so they came yesterday so they could spend the day with David. He was surprised, and it was a good surprise for him. If we go home tomorrow morning, Jennifer will follow us home; if we don't leave until late tomorrow or Tuesday, she will just go home tomorrow morning and not wait for us. It was good for him to have her come to see him.

Well, that is about it for now. Keep coming back for more; we never know what could happen with this child of ours! Thank you for your prayers. We need them! Have a good day. God bless you. We love you.

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FRIDAY, MAY 16, 2008 04:45 PM, PDT

Here we are in Children's Hospital, our other home. We got here about 9:30 or so. Did we get a private room? Well, we are NOT in 5 south (the private rooms); yet. Right now we are in isolation! MaryAnne said that was the only 'boy' room available~~and it is private! So, yes, we have a private room. MaryAnne said they are short on chemo nurses, so we will be moved into 5 south as soon as a room opens up. But I am very happy in this isolation room. And so is David. It has a HUGE window bed, about 1/3 longer than all the other window beds. David is sitting in the window bed as I write this.

Connie had the orders sent yesterday so they would be ready this morning, so we were hoping to get hydrated as soon as we got here. Well, they started the hydration at 11:15. So we did have to spend a little bit of time waiting, but not too bad. And his urine is below 10.10; right where he needs to be to start chemo. So he will start as close to 5:00 as possible; Rebecca said she will make sure it gets started as soon as possible. So......we should be out of here on Monday! Please continue to pray that we get out of here on Monday. God has been answering the prayers of all of us, so far. Well, He always answers, just not always how we want. But we have been having some really good answers lately and I would like them to continue.

We are starting to actively check David's B12 levels, so we know when to start giving him his monthly injections. His vitamin B12 level (in his blood) on Feb. 26 was 755.5. On April 30 it was down to 543.1. Now I am not sure how low it has to be before we start supplementing, I just know they don't want him to 'bottom out' because then we are in big trouble! So I just talked to Rachel (the dietician), who talked to Dr. Raphael, who said we will be checking his levels this admission. I will let you know what we find out. It just sucks that David will have to have these monthly injections for the rest of his life! He will have many 'scars' from this whole cancer experience. Grrrr. Oh well, he is a tough kid, and he impresses us daily!

Well, I will keep you posted on how things are going here. You all have a good evening. God bless you. We love you.

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THURSDAY, MAY 15, 2008 09:46 PM, PDT

We are back from San Francisco. Here is the news you have all been waiting for. Ready? You sure? Better sit down, because this is going to blow you away. Ok, I think you are ready now. Here goes. I will try to explain it as best I can. David gets to keep his leg! Dr. O said that the problem appears to be that his kneecap is sliding off the metal. He said the muscles on the outside of his knee are stronger than the muscles on the inside of his knee, so the outside muscles 'win' the battle and pull his kneecap off the 'grove' it sits in. He said it is not good that this happens; but it is not bad. It is also (you will guess this one) not common. Of course it isn't common! This is David we are talking about! He said that it is only an emergency if the kneecap actually dislocates; and in 12 years he has NEVER seen that happen. Well, he has also NEVER seen an intussusception in a 13-year-old! David is our curve ball thrower, so we are just praying that the kneecap never dislocates. Please pray for that! But Dr. O said what is happening is nothing to worry about. It will make the knee feel funny when the kneecap slides out of the groove, but as David's muscles get stronger it won't happen as much. David is just so weak in his right leg. So he knows he needs to work harder at doing his exercises so he can strengthen those muscles. Also, Dr. O said that normally he wouldn't see David for 3 more months; but since he is having 'trouble' he wants to see him back in 2 months. But he did say that David is making remarkable progress; for him. He said he started out with so many disadvantages that the progress he has made is incredible. He said the x-rays look great; and show some new bone growth around the knee (he called it 'elephant feet'). One side of his knee shows a lot of bone growth, the other side shows a little; but still progress!! Needless to say, we are so excited! He also said that David looks really good, and he was extremely pleased with the range of motion David has at this point. He isn't there yet, but we are working on it. He kept saying that David started out so far 'behind the 8 ball' that he is very pleased with his progress, so far. Whew! We all took a deep breath and......

We into the city for the rest of the evening (our appointment with Dr. O was for 3:30, we saw him at 5:30). We took David down Lombard St. and to Fisherman's Wharf. We had a lot of fun. We ate dinner outside at a sourdough bakery (yummy), and just walked around. Well, Bryon and I walked, David rode in his wheelchair. It was a nice day~~~except it was 95 degrees in San Francisco!!! A bit too hot for me! But on the ocean it was cooler. It really was a beautiful day. Now we are all sitting in the Family House. Oh, that is a praise, too! We got THE best room in the house, and Bryon got a parking place in the garage~~~don't have to pay to park at the hospital! One of the managers here told me a couple of months ago that we are one of her 2 favorite families! She worked things out so we got this room, and it is the best! The only thing is~~~no air conditioning and we are on the 3rd floor! But we will survive, we have a fan in here. Now all we have to have done to make this a 'perfect' trip would be a private room at the hospital!! Of course, you know 'perfect' is a relative term here. Nothing is perfect about our son having cancer! But we are trying to find the positive things in life, and cherish every moment! We are trying to make memories that will last beyond this horrible chapter in our lives.

It took us a little longer than expected to get here. The reason was because of one of the many things I HATE about summer~~~road construction! That is why we had to do all our 'sightseeing' after David's appointment and not before. Oh well.

Anyway, you all have a great night. I will let you know how things go tomorrow when we get to the hospital. I will let you know if we get a private room or not, please pray that we do!! Thank you for your prayers and your support and your love. We really appreciate it. God bless you. We love you.

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WEDNESDAY, MAY 14, 2008 04:55 PM, PDT

We are getting ready to pack everything up soon. I like to have a lot of the stuff done the night before so that morning won't be so hectic. We have a LOT of Propel for David to drink. The chemo drug has to stay in his system for 24 hours before they start to flush it out with the leukavorin, and that is when we start making him chug the fluids! We sure hope to be out of there Monday! We have some friends coming from Texas on that day, and we will only be here for a few days that they are here, and I would REALLY like to see them! I miss them. So I hope we are home on Monday~ ~even if it is late! Then maybe we can get rested up on Tuesday and we can see them on Wednesday. How does that sound, Debra? Sounds good to me!

Anyway, I gotta go make dinner. Please continue to pray that David's knee is just having a minor problem and not something major. He says it feels 'funny' again today, and it still hurts. Thank you for your prayers. Have a good evening, and I will try to post tomorrow night and let you know how the appointment with Dr. O went. God bless you all. We love you.

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TUESDAY, MAY 13, 2008 10:23 PM, PDT

Good evening. I got a call from Connie today~~no more GCSF shots for David for now! Whoo-Hoo!! He was sure happy about that. His counts are 'fabulous' and he is good to go for chemo on Friday. We hope to get to the hospital in the morning, we will already be in Oakland, and then he can get started hydrating right away so we can get the chemo going so we can go home on Monday! Please pray that it works out that way. We really want to come home on Monday. Thanks for your prayers.

Our weather is getting warmer, and that is a good thing. The reason is~~~Bryon can ride his motorcycle to work to save gas. That helps some with our finances. He really enjoys taking his bike to work. I sometimes worry about him; well, everybody else on the road; but I just trust him to God (as I do David) and so far so good! But it is a help with the gas; gas being so expensive and all. So it is good to have the weather warming up.

Well, nothing else to report. David still can't put weight on his leg, but we think that maybe the pain is because of the GCSF shots he was getting. One of the side effects of that drug is bone and joint pain. We are hoping it is because of the shots, and not a problem with the knee. Please pray that the problem is the shots and not the knee. Thanks.

I am tired and I need to go to bed. You all have a good night and a good day tomorrow. God bless you. We love you.

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MONDAY, MAY 12, 2008 04:49 PM, PDT

Good afternoon. It is a beautiful afternoon here in Carson City, Nevada. Windy and cool; just the way I like it! Blue sky, white clouds, and sun. It really is a beautiful day, and I thank God for it.

I hope all you mothers out there had a good Mother's Day. Mine was wonderful. We did go camping~~~yay! It was a lot of fun. We got David on Bryon's quad and Jeremy's quad; and he had fun. He was a little scared because he was afraid they would hit a bump and 'jam' his leg/knee, but nothing happened. Then they all went out riding for the day on Saturday and David and I stayed in the trailer and played games. We played yahtzee, scrabble, and connect four. We also played with our gameboys (yes, I have one, a pink one) and read. We had some good Mom/Son time. Then everyone else came back and I made tacos for dinner. The weather was beautiful where we were, and quite windy. We heard the coyotes at night; we were glad we had the dogs in the trailer with us!! Then we got home late afternoon on Sunday and we went to a great BBQ place called 'Locals' for dinner. It was a wonderful weekend with my family.

David is still having trouble with his knee. Now he won't put weight on it at all, he says it hurts. We told him we will talk to Dr. O'Donnell on Thursday and see what is up. David has to have an x-ray, so hopefully we will find out what is wrong with it. We are praying it is nothing, but we just don't know. It is just strange, he was starting to do pretty good with it, and now he won't walk on it. Oh well, we will fix whatever is wrong with it. Please continue to pray that whatever is wrong with it is 'fixable' without David having to lose his leg. Thanks.

When we go to San Francisco on Thursday we want to leave kinda early so we can get there early. David's appointment isn't until 3:30, but we would like to take him to the ocean again, and Bryon wants to take him down Lombard street. We want to do something fun while we are there. All the times we have been there the last 7 months (about 15 times) have not been for fun; it has been for surgery or surgery-related appointments. So we want to something different besides just the appointment this time. Then we have to go back to Oakland (our 'other' home) so David can have chemo on Friday. This one is the Methotrexate; or just 'Meth' to us, so he has to flush it out of his system before we can go home. We hope to only be there for 4 or 5 days, because then he has to go back the following week for more. Poor guy. Right now it seems like we are living from chemo to chemo. We spend as much time (if not more) in Oakland Children's Hospital as we do at home! Yikes! This too shall pass in time. We are praying for the day when David walks out of the Hospital cancer free!! We are praying for the day he is cured and can go on with his life. He will have a LOT of 'battle scars' on his body; he is fighting a battle. It breaks our hearts to see all the scars on our young child. Anyway, with God we will get through this.

Thank you again for all your prayers~~~please keep them coming. We aren't done yet! I need to go figure out what I am going to make for dinner tonight. Bryon will be home in an hour, so I better go. You all have a good evening. God bless you. We love you. <><

P.S. I will post the pictures of David on the quads as soon as I can. Be looking for them!!

---------------------- THURSDAY, MAY 08, 2008 10:47 PM, PDT

Ok, here is the haps. We went to Reno today and saw Connie. David had to wear a mask because he is extremely nutropenic (sp), meaning his ANC is 120. Even with the GCSF shots I am giving him! Connie said his white count really can't go much lower, it is already so low. But David's platelets and hemoglobin are ok. So we were in a room off to the side, and not anywhere near other kids. Anywho, Connie checked out David's leg and she said that she can't feel any problem with it. But she said that if it gets worse then David is to go back to the wheelchair and stay totally off the leg. She said it is very important that we keep our appointment with Dr. O'Donnell next Thursday. Then we will find out if there is anything to worry about. Until then, we aren't going to worry about it. Connie said as long as he isn't in pain, it probably isn't anything serious. David said he still feels a 'clicking' at times, but it could be anything; or nothing. Connie also said that they will be there (in Reno) on Monday, so if something happens over the weekend we can come in on Monday. She said that it would be VERY unusual for there to be a problem, but this is David we are talking about! She said anybody else she would just tell them it was probably nothing, just keep an eye on it~~~but David she wanted to see! He has quite the reputation, being the curve ball thrower that he is! Oh well.

Connie also said that David is a poster child for the feeding tube! She said he looks so much healthier and the feeding tube was definitely what he needed. We do NOT regret doing that! It is a pain, and an expense, but how do you put a price on your child's health? I sure can't. Insurance companies do, but I don't. We will do whatever it takes to get him healthy and cured of this horrible monster. In time, in time.

Well, that is the haps. Connie told us (when we were done) to get out of the hospital~~too many bugs there! So we came home and David did more schoolwork. Please continue to pray that there is nothing seriously wrong with his knee. Thank you for your prayers. We are so thankful for each and every one of you. God has blessed us with some wonderful new friends and fellow believers in this battle~~Lawlor family, we love you! We are sorry we met under these circumstances, but we are glad we got to know you. We continue to pray for Teagan. We thank God for bringing you into our lives. Gotta go. It is late and I am tired. You all have a good evening. God bless you all. We love you.

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TUESDAY, MAY 06, 2008 11:06 AM, PDT

Urgent prayer request!! David said he kinda heard a 'pop' last night and then his leg felt kinda funny. He said his knee felt loose. Well, today it is the same. We have an appointment Thursday at 10:30am in Reno with his oncologist. They are gonna take a look at it, and x-ray it to see if there is a fracture or something wrong. David said when he tries to walk on it, it doesn't feel right. Please pray that it is nothing abnormal. See, if this replacement doesn't 'take' he will lose his leg. We don't want to put him through another surgery, especially an amputation at this point. We know that is always a possibility; and David knows it too, but we were so excited to have him keep his leg; we would really hate to have him lose it now. He was just beginning to walk on it (with a walker, but walking!) We have his brace back on his leg to keep it from getting damaged; and that is a step backwards! He was doing so good! Oh well, this is just another hiccup. I told you a couple of months ago that David likes to keep us guessing. He likes to throw curve balls. We never know what he is going to cook up for us. Sigh! Please pray for us. Please pray for David! Please pray he doesn't lose his leg. Thank you. I will chat with you all later. Thank you for you prayers. God bless you and give you a good day. We love you.

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MONDAY, MAY 05, 2008 08:58 PM, PDT

Good afternoon; or is it evening? Anyway, I hope you all had a good day today. David had a pretty good day. He even sat outside on the patio and did some of his schoolwork. It was a little chilly, so he had his jacket on and a blanket on his lap. But it was good for him to be outside today.

We didn't stay long at the potluck yesterday. That was mainly because it started to rain! There was thunder, a little lightning, and huge raindrops! And it was pretty cold, in the 40's. So we weren't able to stay long. But it was fun while we were there.

We are really going to miss Pastor Adam. His last sermon was very good. It spoke to me. The main thing I got out of it was to keep my eyes on Jesus. Peter could walk on water until he took his eyes off of Jesus; then he sank! We are to keep our focus on Jesus; NO MATTER WHAT STORMS MAY BE SURROUNDING US! Romans 5:3-4 says, "And not only this, but we exult in our tribulations, knowing that tribulation brings about perseverance; and perseverance, proven character; and proven character, hope." Adam said that there are things we can trust God to do~~His perfect will coming to fruition; He keeps His promises; and I believe God has a purpose and a plan for me. We are most definitely going through tribulations right now! Not just with David, but with people violating and betraying us. But we are going to 'rise above' these circumstances. We are going to 'let go and let God' take care of everything in His time and according to His will. We trust Him to heal David of this ugly monster. Please continue to pray for us as we go through these trials. Please pray that David will be healed soon, and grow up to live his dreams! Thank you again for 'standing in the gap' for us. To be honest, sometimes it is hard to pray when we are watching our son go through what he is going through; sometimes we just don't know what to say. Praise God that He knows our hearts; He hears the words we can't say. I am so thankful for that. God is there with us ALL the time. And if we feel far from God, we are the ones who moved, not Him. We thank God for the friends we have that have surrounded us with their love. We are also thankful for new friends and fellow believers that God brings into our lives; like David's last roommate and our nurse Autumn. We don't need all the other negative and 'abusive' people in our lives, so we are going to 'cling' to the people who really care about us and love us. Sorry, didn't mean to preach at you all.

Please pray that David can get caught up with school. He is doing his best, but all these hospital stays, and chemo treatments, and surgeries have taken a toll on him in sooooo many ways. We really don't want to have him doing school all summer. But he will do what he has to do. Just pray for him to be able to focus and get done. Thanks.

We are going camping this weekend. All 7 of us! We were supposed to go last fall.........oh well. The kids have been wanting to go (me too), so I said I wanted to go for Mother's Day. So that is what we are going to do. And the weather looks great for the weekend~~high 60's low 70's! Sound good, huh? The lows are in the low 40's; but we have a heater in the trailer that works GREAT!! So it should be fun. Just to get away and do something that we enjoy as a family will be great. I won't be able to post this weekend, so I am giving you plenty of warning! I will 'catch you up' after we get home. I plan on having a wonderful Mother's Day with my children out in the wilderness. We are hoping to get David on the quad again; he has been nervous since he rolled it! We had to sell his dirt bike~~he can't ride it anymore, and he looked so cute on it! I am glad we have a video of him riding it. We will probably get him a new one with an electric start~~his was a kick start and he can't do that with his 'fake' leg. Anyway, we will just have him ride around the campsite, Jeremy said he will take him on his quad. It should be a great weekend.

Well, I need to get David's meds ready. You all have a good night. God bless you all. We love you. Thank you for your prayers.

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SATURDAY, MAY 03, 2008 10:36 PM, PDT

Good evening. I hope you all had a good day today. Ours was busy, as usual. We had to go grocery shopping today, and that tends to exhaust us so much these days. But now we have food in the house for a couple of weeks. Actually, whatever we don't use these two weeks we are home the girls can use when we are gone. I have my daily menus, but I still pick a meal, and I don't necessarily stick to what I wrote down for that day. Plus, I always forget to factor in 'leftovers'. Oh well, at least there will be food for at least 2 weeks. We hate spending the money, but what can we do? Plus, with gas going through the roof.....well, that is just part of our financial problems you don't want to hear about.

I would covet your prayers. My daughters and I have been betrayed, AGAIN, by someone we should have been able to trust. I remember writing a long time ago about how trust is hard for me because of a lifetime of betrayal. Well, it has happened again. I am not so upset about it happening to me; it doesn't surprise me coming from this person. But I am hopping mad that they did this to my daughters. Please pray for my attitude and that I can forgive this person. I know forgiveness is for me, not them, but still. This person doesn't give a rip if I forgive them or not, but I know God wants me to forgive them. I don't want to have that between me and God. Thank you for your prayers.

Tomorrow is a potluck at church; it is our pastor's last Sunday. We are really going to miss him, but we are looking forward to what God has in store for our church. These are scary and yet exciting times! The potluck (actually a potluck/picnic) will be fun. We will only be able to stay a little while, but it will be fun as long as we are there.

David has been doing real well with the shots I have to give him every day. They are the nuepogen shots that boost his bone marrow. This chemo wipes out his white count, so the shots help his bone marrow produce the white blood cells he needs to fight infection. Obviously, he hates getting a shot every day, and I hate giving him one. But as long as I warm the serum to room temp. before giving him the injection, it doesn't sting as bad. Of course the needle still hurts, poor guy. But he just deals with it like the trooper he is! We are so impressed with this kid!

Your prayers for Teagan worked! She is NED! Thank you for praying for her. We are so happy and excited for her and her family. Now just pray that she stays that way forever and ever!

Well, it is late and I am tired. You all have a good night and a good Lord's Day tomorrow. Thank you for your prayers, they mean a lot to us. God bless you all. We love you.



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FRIDAY, MAY 02, 2008 01:43 PM, PDT

I totally forgot to tell you something Dr. Su said on Monday. It was about the new 'spot' on David's lung. One of the reasons we are waiting to see what happens is she doesn't want David to go down in the Guinness Book of Records for having the most surgeries in the least amount of time! She is so funny. She was laughing when she said that. Yeah, we don't want that for him, either! I just remembered that I forgot to tell you that. Have a good day. God bless you. We love you.

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FRIDAY, MAY 02, 2008 10:58 AM, PDT

Good morning. David had a good night his first night home. The feeds went very well. He is now doing school. We both kinda wish it was summer and school was over........but he will get done. Yes, it will take him longer, but it will happen. He is a smart kid, and he will finish this 9th grade year (his freshman year) in due time. This is just a 'bump in the road' and we will get through it.

You know, people are really interesting. God made us all different, and we are finding out how true that really is. I have heard from some people that when their child was diagnosed with this horrible monster, called Osteosarcoma, it bought their family together. Too bad that doesn't always happen. I have heard that some families think the child's family just wants attention. Is that sick or what?!?! Let me tell you; anybody who wants this attention can take it from me and they can have it!! ANY time! I would rather NOT have it, thank you very much! But some people just want all the attention on themselves, and don't want to 'share' it with a child with cancer. I can say as far as we are concerned, it brought Bryon's family closer to us. Not that we were estranged or anything like that; just not much in contact. You know, life gets in the way sometimes. It feels good to be in contact with them again. We know they are there for us. Some people say, 'well now you know how I feel' now that something devastating has happend to the child's family. How twisted is that?! What, now they are happy that a child has cancer? How self-centered is that? I am trying really hard not to 'point fingers' at people; but if you are doing this to others you know who you are. I have talked to people who have families who think their child will just "get over" this; like it is the flu or something. Or a child with cancer is compared to; say, an adult with down syndrome~~~yeah, that is the same! We all make mistakes in our lives. You would think that families could 'let bygones be bygones' when a child in that family has cancer. You would think the rest of the family could rally around the family with the child stricken with cancer. You would think that the other family members would call the child's family once in a while~~not wait for the child's parents to call them. But I have to remember that unless you have a child with cancer you have NO idea how exhausting it is. You don't know that the parents don't have the energy or inclination to initiate the phone calls. Of course we would talk if you called, but don't wait around for us to call. I have talked to people who have 'lost' their whole families because their child has cancer. I just wish all families could support the family of a child with cancer. I read a saying (again, from someone in my shoes) and it is sooooo true. It says, "When your parents die; you lose your past. When your friends die; you lose your present. When your children die; you lose your future." Our children are our future. We parents all have hopes and dreams for our children. Guess what? Cancer was not on that list! So, please, if you know a family member (or you are one) that has a child with cancer, be there for them. Please don't expect them to be there for you right now. Do them, and yourself, a favor and don't abandon them. Cut them some slack if they are not responding to YOU the way YOU think they should. I speak from experience that we (parents of a child with cancer) have a LOT on our plates. Unless you see it every day, you have NO idea. I have had people, countless numbers of people, say to me, "I don't know how you do it". All I can say is, I don't either. I just do what I have to do. I have to watch my son fight for his life. I go to bed physically exhausted and still don't sleep well. Rachel was with me this past week and she said it is exhausting! You get very little sleep so it is physically draining. Then the emotional aspect........well, I think I have said enough.

Again, thank you for letting me journal my experiences and vent. I have read a LOT of CaringBridge sites, and chatted with other osteosarcoma parents, and I have gleaned a lot of information. Today I am just journaling based on things I have read and my own experiences. Thank you for your time.

Please continue to pray for David and our family. Please try to put the past in the past. As Paul said in Philippians 4:13".....forgetting those things which are behind and reaching forward to those things which are ahead" and try to be there for your family member who has a child with cancer. Keep in mind, this could be a long journey. I know it will be for us~~the rest of David's life. Try to let past problems be just 'water under the bridge' and forgive them, if you can. If you can't; that is between you and God. Again, this is MY journal that I can (and will) print out when I no longer need to journal my feelings anymore. Thank you for being there. Thank you for your prayers. God bless you. We love you.

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THURSDAY, MAY 01, 2008 09:42 PM, PDT

We are home! We are back in beautiful Carson City, Nevada! And David did NOT throw up on the way home. I gave him his zofran plenty early enough so it would 'kick in' before we had to leave. He and Rachel watched 'Lord of the Rings' in the car, so I think it distracted him enough that he didn't get sick! Even the winding mountain roads didn't make him sick. Thank you for your prayers.

Bryon surprised the kids and came last night. They were pleasantly surprised when he walked in the door. Tonight David thanked Bryon for coming last night. It was very sweet. Everyone just slept in (except me, of course), and then we packed up the car, cleaned our room at the Family House, and left. David said this is the first time he has stayed at a Family House without having a surgery the next day. He was sooooo glad to be able to go home the next day, not go to the hospital.

So we are home for 2 weeks! We go to see Dr. O'Donnell on May 15, and David has chemo on May 16. He will spend the night May 15 in the Family House, and go to the hospital the next day. Bummer. This next chemo is Methotrexate, so he will get hydrated for 6 hours (or so), chemo for 4 hours, leukavorin after 24 hours (every 6 hours), then wait for the meth to clear out of his system. When the meth level in his blood gets to be <.1 we get to go home! But we will make sure he drinks the propel and he will be good. But we are really going to enjoy our 2 weeks home!!

Well, I am pretty tired, it was a long week. You all have a good evening. Thank you for your prayers and your love. Thank you for reading this site. As I have said before, I don't know who reads this, but God does. I pray a special blessing on you all. Thanks again. God bless you. We love you.

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WEDNESDAY, APRIL 30, 2008 07:16 PM, PDT

Good evening. David got discharged!! We are all 3 sitting here in the Family House. Bryon will come tomorrow and get us and we will go home. YAY! This chemo wasn't too bad for David. The drugs kept him nausea-free! He did quite well this time. We will see how he does tomorrow when we go home. I do have some zofran to give him, so hopefully we will have an uneventful trip home.

David had to have an echo-cardiagram this morning. The tech who performed the test thought David's heart rate was a little fast so he ordered an EKG also. They said he has a sinus Tachycardia. But Dr. Styles thinks that is because as they were doing the echo the tech was pushing on David's chest and it hurt his ribs. Dr. Styles thinks the rapid heartbeat was because David was in pain. So we are NOT worried about it. Whew!

Autumn did a great job getting the feeding tube down. We removed the tube this morning and gave his nose a rest. Then this afternoon Autumn put the new one in. We are using the other nostril this time. It is not a pleasant experience, but David is a trooper, and he handled it fine. It took a few minutes for his nose to 'get used to it', but now he said it isn't that annoying. He won't get any 'feeds' tonight, since we are staying at the Family House. We could have stayed another night at the hospital~~~yeah, try talking David into that one!! So it will be nice tonight, and then we will go home tomorrow.

Well, that is all that is happening. Please pray that Bryon has a safe trip here. Thanks. I will post tomorrow and let you know how David does on the ride home. Thank you for your prayers. Thank you for caring about David and us. Thank you for checking up on him. God bless you all. We love you.

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WEDNESDAY, APRIL 30, 2008 09:33 AM, PDT

Good morning. David had a pretty good night last night. Of course, he had to get up several times to pee; what with all the hydration they give him (and all the gatorade he drank) but that is ok. When he was asleep, he slept good. Chuck did have to slow down the infusion of the etoposide chemo; David's blood pressure was dropping for 3 checks in a row. It got low enough to 'alarm' them, so they slowed the rate down and his BP went backup where it should be (up to 116/68). And now he is done with chemo for 2 whole weeks! YAY!! We can't remember the last time we were home for 2 whole weeks! Even between surgeries we were only home for a week. We were supposed to be home for two weeks after his limb-salvage; but then he got the intussusception and had to spend an extra week in the hospital. We are going to really enjoy our 2 weeks at home!

I will post later and let you know how the re-placement of the feeding tube went. Please pray that David handles it well. Thanks. Have a good day. God bless you. We love you.



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TUESDAY, APRIL 29, 2008 09:07 PM, PDT

Good evening. Today has been a long day. It was brightened up when Bethany came to visit. Rachel and Bethany have been friends since they were toddlers~~~like 3-year-olds! So they go WAY back! It was good to see her.

Ok, I talked with Connie today. We have a game plan. I will not go into it yet, because I don't totally know dates yet (plus, I haven't talked to Bryon about it yet). So stay tuned, and I will let you know.

David started to throw another curve ball tonight. His urine has to be 10.10 or less for chemo to happen. This chemo is 2 separate chemos that run consecutively for one hour apiece for 5 days. Today is day 5. Chuck said David was 'on hold' to receive the chemo tonight because his urine was 10.15!! Grrrr. So I had to run down to the cafeteria and buy some gatorade for him to chug. Well, he is 10.10, so chemo was a go! Yay! I tell you, this child just likes to keep everyone hopping; and guessing! We NEVER know what he is going to throw at us! Oh well, it is all water under the bridge now. He is receiving the first of the last two chemos this treatment. This one is so dangerous, that they have to take his blood pressure every 15 minutes the whole hour it is infusing. Apparantely this poison also can lower the blood pressure alarmingly. So far, so good. Keep the prayers coming.

Connie said that the feeding tube was the best thing we did. David is heavier (105 pounds) so now he can be given more chemo. Being that chemo is based on height and weight, David maybe wasn't getting enough before. His cancer is extremely aggressive, and he was too light to get enough chemo to kick the cancer's butt! So now...............maybe we really won't have to worry about a relapse. Don't worry, I am not going to bleed before I am shot! I am really glad we decided to give David the feeding tube. Please pray for him tomorrow. They like to change the tube every 30 days; so tomorrow is the day. He is a little nervous to have it taken out and another one put in; but I know Autumn will do a good job. We really like Autumn~~she is a Christian and loves the Lord. And she is a wonderful nurse! So we are happy to have her and Chuck as David's nurses these past few days. Autumn is in the daytime and Chuck is at night. The overnight nurses we don't interact with, so we don't really care who they are; just as long as they are quiet!

Well, I need to go. Please continue to pray for my sweet boy. Also, please continue to pray for Teagan~~scans are still unclear about possible lung tumors; and a possible recurrance to her right knee. I want to be able to tell y'all that it was nothing. We all covet your prayers. Thanks. God bless you. Have a good night. We love you.

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MONDAY, APRIL 28, 2008 07:31 PM, PDT

Good evening. I talked to Dr. Su and to Connie today. Dr. Su said she is pretty sure (too bad it is not 100% sure) that the nodule on David's lung is not cancer. She suggests to continue with chemo, and do another CT scan in a couple of months and see what happens. This is not just a 'wait and see'; we are still doing chemo.

Connie said she talked with Dr. Hastings and we will be adding back in the three chemo drugs that David had before. They think they were working; just not as well as they hoped and wanted. So we will be giving him all 5 drugs. Instead of chemo on one week and off two weeks; it will be on 2 weeks, off 2 weeks. I don't know for sure how long we will do this for, or when it starts. Connie said she will let me know tomorrow or Wednesday. They meet with the tumor board tomorrow, and they will be discussing David. Then she and Dr. Hastings will get a 'game plan' together and let me know what it will be. Please pray for that, Bryon has classes he is scheduled to go to in June, and they are 'set in stone' and he can't change them or get out of them. I REALLY don't want to have to come to Oakland alone, but I will do what I have to do. It is very hard to do this alone (Wendy, don't know how you did it), especially if we are not in a private room. In a private room it is a little easier~~~don't have to leave the room to take a shower. Being in a shared room is very difficult anyway; a nightmare when there is only one parent there. Like I said, I will do what I have to do; I just pray I don't have to!

We got to see Teagan today! She looks so good. Please continue to pray for her, I don't know what the results of her scans are. But she is doing so good with her walking. She can take a couple of steps on her own. She is such a doll. We really love that little girl. She is such a champ and a trooper. She asked if she could give David a hug; it was sooooooo sweet. It was great to see her, we missed her. We can't wait to get together with her this summer.

Well, gotta go. I am going to the Family House tonight, Rachel is staying here with David. We are alone in our room, our roommate left this morning. There are only 6 kids on the floor! So we have a 'private' room for tonight. We hope it stays that way until we leave. Please continue to pray for us as we go through this 'season' in our live. Thank you. We love you. God bless you.

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SUNDAY, APRIL 27, 2008 11:04 AM, PDT

Well, we got a preliminary report about the CT scan. There is a suspicious 'spot' on the upper lobe of his left lung. Dr. Hastings wants to review it with Dr. Su, and then come and talk to us on Monday. Dr. Hastings wants to talk to Dr. Su about it to see of it is in the area she worked on, because it could just be scar tissue. See, David likes to throw curve balls. I will keep you posted as to what the Dr.s have to say.

Please pray for Bryon as he goes home today. Please pray he has a safe trip. Thanks.

Gotta go. God bless you all. We love you.

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SATURDAY, APRIL 26, 2008 09:59 AM, PDT

We made it to Oakland fine. David was a bit neasous during the trip, so I just gave him some zofran and he didn't throw up! Yay! We really didn't want to go there! But we made it in time for his CT scan. We haven't heard the results of the CT scan yet, so we don't know what it showed. I will update as soon as we hear.

David got put in a room (luckily window) with a BABY!!! Boy, do we HATE that! But the baby was discharged not too long after we got here. But we moved to the room next door (still a window, yeah!). We asked if we could move. We are now rooming with a 15-year-old boy with osteosarcoma! He was diagnosed in February. His name is Chris and he has osteosarcoma in his left femur. They are so very fortunate; they caught his VERY early. It is NOT in his lungs, and Dr. O'Donnell (same surgeon we have) said Chris has one of the smallest tumors he has ever seen. Dr. O told us that David's was a very large tumor. I am happy for them that they have a small tumor; and it is not in Chris's lungs. His surgery will be in May, same surgery; but not with an expandable rod in his femur. He won't have to have any lengthening surgeries. Anyway, it is good to have a roommate close to David's age with the same diagnosis! (Wendy, we are in room 5327) That has never happened before.

David is tolerating the new chemos fine, so far. He started his hydration almost right away when we got here! That was a miracle! Usually we wait around from 3 to 6 hours before they even start the hydration!! So things are moving along quite nicely! We hope to be out of here on Thursday. He has 5 days of the chemo, and then 24 hours of hydration afterwards. So we hope to be done by Thursday. Bryon has to work next week, so he is going home tomorrow and leaving me and Rachel here. He wanted to be here for David's CT scan, and he spent the night last night with David. Then he will come and pick us up; probably on Friday, We don't know for sure, we will see.

I will post more as I know more. You all have a good day. God bless you. We love you.

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THURSDAY, APRIL 24, 2008 08:16 AM, PDT

Good morning. I forgot to mention that David is up to 110 degrees on his CPM machine! He says it hurts a little bit at first, the knee stiffens up at night, but then he can move it quite well! We are so happy to see that knee alternately bend and straighten. You have no idea how wonderful it is!

Well, I just wanted to tell you that. I need to go take care of his broviac. I am going to take him to Bryon's work in a little bit~~~today is 'take your child to work' day. David will only be there for a couple of hours, but everyone wants to see him. While he is gone I have to wait at home for a firewood delivery. We bought another cord to get us through. It is still cold enough in the morning to have a fire; and I want to make sure David stays warm. Since the lows are still in the 20's and 30's here, we still need the fire in the morning. Sometimes I let it burn all day, depending on how warm it is in here.

Anyway, gotta go. You all have a good day. God bless you today. We love you.

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WEDNESDAY, APRIL 23, 2008 08:48 PM, PDT

Good evening. How is everyone this evening? We are doing ok. It has been a beautiful day today. It is really windy (so what else is new), and I love the wind!

I got a call from Connie and she told us that David's blood counts are great! If you remember, back on Feb. 7 I wrote that David's liver was affected. They were worried about his nutritional needs not being met and his body being so malnourished. Well, the nighttime feeds are working splendidly! Connie said all the blood counts on his liver and other organs have rebounded and are now in the 'normal' range! Praise God! She didn't realize that they told me (at UCSF) that they were worried about him. She said his counts were really low, that his body was very malnourished. I didn't realize it was as bad as it was, though. I mean, I knew it was bad, I saw his body, I just didn't know from the medical side of it how bad it was. I cannot tell you how happy we are that things are looking up for David in that area. Now maybe his body can fight the cancer better! And maybe he will feel better with the chemo; as 'better' as he can feel with poison flowing through his body!! He is starting to eat a little better; keeping his stomach 'working' all night is helping. Like I said before, he is getting only 3 ounces of feed every hour, but it is enough to keep his stomach digesting and 'working' all night long! Thank you so much for your prayers, God is working in David's life.

We talked to the doctors about the feeding tube. We are going to continue to do the feeds for now, and see what happens. We have decided that if this chemo causes David to vomit out the feeding tube, then we will just leave it out and go with the appetite stimulants. If he doesn't vomit out the feeding tube, we will keep it in for a while, and wait on the appetite stimulants. We are pretty sure that we will need the stimulants at some point in time, it is just a matter of when. We would just like to get some more weight on him first. Hopefully he won't vomit up the tube; that is the new prayer request! Thanks.

Well, we have one more day at home before we go back to our 'home away from home'. I am getting really nervous about this new chemo. The side effects suck big time! But we can't give up, we have to do what we have to do for now. Again; we aren't going to bleed until we are shot, so we will just take one day at a time. Please pray that we are able to do that! It is all easier said than done! Please pray for us as we prepare to go on Friday. Thank you.

Please continue to pray for Teagan and her family. Teagan goes on Monday for all the scans and tests she had months ago that found her cancer. Please pray that she is clear, and that she will be NED (No Evidence of Disease). She is such a sweet little girl, and we have really grown to love her (and her family). Please keep her in your prayers this weekend and on Monday. Thanks.

You all have a great night. Thank you for visiting and checking up on David; and thanks for your prayers. I will keep you posted on what is happening. Keep coming back. God bless you. We love you!

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MONDAY, APRIL 21, 2008 09:50 PM, PDT

David has his appointment in Reno today. He is 'good to go' for chemo on Friday. And when they weighed him, he weighed 106 pounds!!! Praise God! We were so happy to see that. That is the most he has ever weighed. The nighttime feeds are definitely what he needed! His face looks a little 'fuller' and he looks somewhat healthier. He still has dark circles under his eyes, but otherwise he looks pretty good; all things considered.

The doctor checked out his scars (way too many) and said that they look really good. The incision on his left side is still covered with steri strips, but it still looks good. Because the appointment was for 11:00, we got out of there around 11:45; so we did lunch in Reno. David wanted A&W because that is where his sisters had their first jobs. They worked at A&W in Carson until the restaurant closed it's doors. They enjoyed working there. But; sorry girls; I don't really care for A&W, so we got David a cheeseburger and a root beer, and then Bryon and I went to Baja Fresh. Now that will not surprise my mom, we always went there every time we went to Reno. I think my husband thinks that Baja Fresh is the only place to eat in Reno! Just kidding, darling. So that is what we did today.

When we got home David did school. Then he played video games. Now, normally we do not allow video games on school days, but he is going to be in the hospital this weekend, and he just got some games for his birthday.........so we let him play his Wii after school. He brings his psp and nintendo ds with him to the hospital, but doesn't always play them. And we have no idea what to expect this time, with the new chemo and all. Please pray that he will do well on the new 'poison' they give him; and please pray that it does the trick.

We have a mini game plan. Connie said we are going to do these 2 new drugs for 3 cycles; then do another CT scan to see where we are, and then set up a game plan from there. Please pray that we got the cancer out once and for all. They have removed all the known cancer from David, but we can't really call him 'cancer free' yet. I read today on our os website/support group that there is a woman who relapsed after 16 years! There is a saying on that website that says, 'don't bleed until you are shot' and I am trying not to do that. But it is just frustrating to know that David will NEVER be considered 'cured'! Please pray that God can give us the peace that surpasses all understanding as we struggle with this monster in our son's young body. Thanks.

Well, it is time for bed for David downstairs~~~so that means we have to go upstairs so he can go to bed. Actually, it is past bedtime...........but you know how it is. Could you please pray for a family that Bryon and I have been keeping 'tabs' on? Their 14-year-old daughter died today from Ewing's Sarcoma~the other bone cancer. Her name is Emilee, and her mom's name is Monica. She has 2 sisters. Please remember them in your prayers today. Thanks. You all have a good night, and thanks for checking up on David. God bless you all. We love you.

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SUNDAY, APRIL 20, 2008 08:53 PM, PDT

Thank you for all your Birthday wishes to David. He had a good day today. He didn't go to church today, he is still pretty sore and in pain, so he didn't feel like going. He wanted me to make 'sour cream chili bake' for lunch, so that is what I made. I was thinking about a barbeque, but it was kinda chilly outside anyway, so it was a good day for the casserole. Then the twins I used to take care of came over~~~David was so happy! Samantha (the girls' mom) brought pumpkin pie; David's birthday dessert of choice! So we had a houseful! We had the 7 of us, plus Samantha, her mom, and the twins! But the house was full of love for David (and for each other). So, overall, David had a good day.

But..........you knew that was coming, didn't ya? Remember I told you a week and a half ago that our refrigerator wasn't working? Well, it turns out it is our self-defroster timer; it's broken. So what was happening is the freezer coils were freezing up. The repairman told me it would take a week to get the part, and the fridge would work again for about 2 weeks (when we turned it off, it defrosted). Well, it stopped working again. So, I had to move all the food into the fridge in the garage. Oh, and the part is STILL on order! The repairman said it would be here for sure in a week~~~it has been 10 days! So please pray that the part comes in soon. This is really frustrating. As I have said before, if it isn't one thing it's another! Oh well. We will somehow get through all of this!

Please continue to pray for David's healing. Also, please pray that his pain will go away. Tomorrow we have to go to Reno because he has a doctor's appointment, and he isn't looking forward to driving in the car for an hour. I have to draw his blood, and then we are going after that. We really want to see him out of pain, poor guy. I hope to ask the doctor if he has any idea how long we will be in the hospital next week; if he has any idea. It doesn't really matter, we will do what we have to do and stay as long as we need to. It is just easier when we sorta know what to expect; like how many days to pack for. Please pray that we get a general idea.

Well, I need to go get David's medicines ready. You all have a good night. God bless you. We love you. Thanks again for visiting and checking up on David. Thank you for loving him and praying for him.

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SUNDAY, APRIL 20, 2008 05:23 PM, PDT

I made a mistake in my last update~~~David is up to 100 degrees not 100% on the CPM; sorry for the mistake.

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SATURDAY, APRIL 19, 2008 09:05 PM, PDT

Good evening. David had a pretty quiet day today. He did his CPM machine for quite some time today~~he is up to 100%!! Dr. O wants him at 120%, so he is almost there! We are so excited to see that knee bend! I can't even tell you how exciting it is! His knee is not quite as swollen as it was, I can even identify his kneecap now!! His knee will never look the same as his 'real' knee, but we are so thankful that he has his leg that we really don't care. He is our 'bionic' boy!

Tomorrow we are celebrating his birthday~~he can't wait! We hope to make this a birthday he will remember and enjoy. He is still in quite a bit of pain, but we are trying to keep it under control with the percocet and the ibuprofen. He is eating ok, but still not as well as we would like him to. He still gets his feeds every night for 10 hours, so hopefully that is helping him. At least he is no longer losing ground in the weight area. Yay.

Osteosarcoma turns beautiful young children into warriors wise beyond their years. Fighting battles that only they can face. Deciding to endure, they hang up their lives on a hook in the corner. Soccer jerseys, football helmets, hockey sticks, basketballs, scooters, bicycles, dirt bikes, and Barbie dolls stand still and silent now. They are armed anew with the uniform of the cancer patient. Broviac catheters threaded deep into their chests, bald heads, bodies hairless and thin and covered with scars. Limping slowly and steadily on heroic limbs absent of their natural bones, they just keep moving forward. They are all tremendously brave kids. I know some of these kids; besides mine. Some I only know through a website; little Teagan I know personally. I know these children's lives have forever been changed by an uninvited monster called Cancer~~Osteosarcoma in specific. These children live from hospital visit to hospital visit; chemo to chemo; and (in David's case) from surgery to surgery. I don't know any adult that could handle the brutality of this life, and yet I watch my son and Teagan endure it. Are they happy about it? NO! Do they do it anyway? Yes, they do. They put life into perspective. They prove what is really important and what is trivial. And I have seen more courage in the two children that I have watched go through this than I have seen in all the adults in my life put together! I know I wouldn't handle it as well as these children have. I am so proud of David and Teagan! They are truly amazing children. I really wish all of you could know David and Teagan~~you would be richly blessed by these children. Ok, I will get off my soapbox now. Sorry.

Well, it is getting late. I need to give David his meds~~he takes a lot of meds (another 'wonderful' side effect) and he needs them on time. You all have a good evening. By the way, our weather is beautiful!! Very windy and cool/cold~~perfect spring day! Oops, gotta go. God bless you all. We love you.

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THURSDAY, APRIL 17, 2008 10:16 AM, PDT

We are home!! We got home around 9:00 last night. David is still in quite a bit of pain at times, but he is glad to be home. He had to sit in the front seat on the way home, he couldn't get comfortable in the back. But that is ok, he reclined the front seat and was quite comfy. Bryon didn't drive too fast, so no nausea! Yay! So thank you for your prayers.

David is camping out downstairs for awhile~~~he can't get upstairs. I am glad we have the futon for him to sleep on. Hopefully he will be able to go upstairs soon. Now with his IV pole with his feeds down here, my family room looks like a hospital room. Oh well, this is just temporary. And he is nice and warm down here with the fire; so it is all good.

Well, I will post if anything happens. I will keep you posted on David's progress in his healing. Please pray that he heals rapidly and is able to be out of pain soon. Thanks. Have a good day. God bless you. We love you all.



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WEDNESDAY, APRIL 16, 2008 12:36 PM, PDT

Three guesses as to what we are doing right now. Anybody? Yep, we are WAITING!!! David is up and walking a very short distance, but he is up. He is still in a fair amount of pain, but he wants to go home. He is on the percoset and motrin. He needs the percoset every 4 hours. We are waiting for the surgeons to come and give us the ok to go home.

Of course, David had a bad night again last night. I didn't know that the orders for David's percoset were 'as needed' (it has been changed to every 4 hours), so he would wake up in extreme pain! They piggyback the percocet with the motrin and give that every 6 hours. Poor guy. When he is in pain he breaths shallow, and they need him to take deep breaths to keep his lungs inflated. But it hurts to take deep breaths, so he breathes shallow, etc. We are soooooo glad these surgeries are over! They might have been done too close together, but now he is done. We are praying he never has to go through this again. We will take it one day at a time, and continue to bathe David in prayer!!

We did get some good news (it is about time!!). We got a copy of the surgery report, and they did NOT have to break a rib on David's left side! They spread the heck out of them, but didn't need to break them. So he is just having to deal with the broken rib on the right, and not on the left! So, even though the surgery on the left was 2 weeks after the one on the right, he will heal faster on the left! Being on chemo slows his healing, so we are really glad only one rib was broken~~~or in their words, 'divided'. Yay!!

Well, pray we get to go home today. Pray that the time home is good. Sometimes it seems that we are in such a routine that it would be 'no big deal' to keep coming back. Just to opposite! It gets harder and harder to keep coming back here. When we do come back, it is just going to be me and Rachel~~Bryon has to be in the office that week. I am so glad Rachel got the time off. I was not looking forward to doing this alone. I would have if I had to, just wasn't looking forward to it. It is going to be an unknown chemo~~meaning David has never had it before. We have absolutely no idea what to expect. Connie said he has to be SUPER hydrated (more that the other chemos) because this one has the potential to really damage the bladder. He has to be so hydrated that he is basically peeing clear~~totally colorless. I wish someone would come up with a chemo that didn't damage other organs, or hearing, or hair, or anything. Please have us 'prayed up' before this next chemo~~I am a little scared.

Well, gotta go. I will post and let y'all know what happens. Take care. God bless you. We love you.

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TUESDAY, APRIL 15, 2008 04:41 PM, PDT

We will not be going home today. They want David to be able to walk before we can leave, and he can't walk yet. His left side is still too sore, so I am not sure when we can leave. I am frustrated; because he whines that he wants to go home, but he is in too much pain to go home. Please pray that we can go home tomorrow. I am going to stay here again with him tonight so Bryon can sleep since he has to drive. Please, again, please pray that we can get out of here tomorrow. Out of the past six months we have spent 3 of them in the hospital!! We are ready to be home. We know we will only be home for a week before another chemo, but then we will be home for 2 weeks! Each day that is spent here this week is one less day at home before chemo. I want off this roller coaster!! I want my baby to be cured of this monster!

Well, I will let you know if we get to go home tomorrow or not. Thank you for your prayers. God bless you. We love you.

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TUESDAY, APRIL 15, 2008 08:47 AM, PDT

Good morning. It is a beautiful morning here in Oakland. It was very windy yesterday and last night, so it is crystal clear here now. I can see the bay very clearly from David's room. We are still praying that we go home today, don't know yet.

David had a rough night last night~~of course. He was in a lot of pain at 2:00a.m. so he got some pain meds. And we all know how important a bowel movement is after surgery. We sure know that; and we have been down that road before when the bowels don't work. Anyway, he finally had one last night; after trying all day to go. He can't 'push' because it hurts his side so much to do that, so it has to just come out. Well, he finally decided that at 2:45a.m. he needed to go. Well, it took him over an hour to finally get it all out. He finally got back to bed at 4:00a.m. Then he was in pain again around 7, so he got more pain meds. He is sleeping now, but it was a rough night. Bryon always seems to get the 'good' nights here, and I get the rough ones. Oh well, such is the life of a parent of a child with cancer!

Well, I will update if we get to go home today. I see that I neglected to say a big THANK YOU to those of you who helped David have a memorable birthday. Thank you for all the wonderful gifts~~and the fun 'party in a box'! Have a good day, everyone. God bless you. We love you.

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MONDAY, APRIL 14, 2008 07:46 PM, PDT

Good evening. How is everyone this evening? We are doing ok. We just got a roommate~~~bummer! But it is ok. He seems to be a good kid. He broke his arm and has to have surgery on it tomorrow. His surgeon is Dr. Jennifer Laine; she was in on David's leg surgery at UCSF. She is good.

David got his chest tube out today! YAY! Then he got the epidural out. YAY! Then he got the catheter out. YAY! So we are hoping; BIG TIME; that we get to go home tomorrow! Please pray that we can go home tomorrow. Pray that David's pain is able to be managed and he will be comfortable. He tried to stand up so he could go to the bathroom, and he was in a lot of pain. Going home is going to be a treat! Please pray that David is able to go home without pain. Thanks.

We sorta have a schedule~~temporary one anyway. We come back to Oakland on April 25 for a CT scan (a post surgery baseline) and then chemo. This chemo lasts 5 days; then we go home for 2 weeks! Then back here for the same chemo, then home for 2 weeks. That is as far as we go for now. We are going to kind of 'wing it' and play it by ear. Please pray that we can get the right 'cocktail' for David that will rid him of this cancer forever. Thank you.

I read this saying today, and I wanted to share it with all of you. It is very true of my life right now:

"I am wearing a pair of shoes. They are ugly shoes. Uncomfortable shoes. I hate my shoes. Each day I wear them, and each day I wish I had another pair. Some days my shoes hurt so bad that I do not think I can take another step. Yet, I continue to wear them.

"I get funny looks wearing these shoes. I can tell in others eyes that they are glad they are my shoes and not theirs. They never talk about my shoes.

"To learn how awful my shoes are might make them uncomfortable. To truly understand these shoes you must walk in them. But, once you put them on, you can never take them off.

"I now realize that I am not the only one who wears these shoes. There are many pairs in this world. Some women ache daily as they try and walk in them. Some have learned how to walk in them so they don't hurt quite as much. Some have worn the shoes so long that days will go by before they think about how much they hurt.

"No woman deserves to wear these shoes. Yet, because of these shoes I am a stronger woman. These shoes have given me the strength to face anything. They have made me who I am.

"I am a woman who has a child with cancer. I will forever walk in these shoes."

- Author unknown

Well, I need to go. I am staying with David tonight. Please pray he has a good night. Again, please pray that we can go home tomorrow. Thank you for your prayers and your support. God bless you. We love you.

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SATURDAY, APRIL 12, 2008 10:23 PM, PDT

Good evening. David is out of the PICU!! YAY! No, we are not in a private room in 5 surgical, but we do have a window and no roommate. So I guess we sorta have a private room :) Actually, we were put in 5 south; but they don't do surgery patients, so they moved us out after about 30 minutes. They were fighting over him , though. 5 south wanted to keep him, but 5 surgical said he has to go there. 5 surgical won! But it is fine. The room we are in is just fine.

David got some surprises today. From the food service here at the hospital he got a card and a cake-shaped cookie that says 'Happy Birthday' on it. All the nurses in the PICU sang to him. Then Lucy brought up a big box from NDOT (Marty's section) and from David's 'Make-A-Wish' sponsors (Marty, again, and April). It also had a card and money from a children's bowling league it the box. The card contained $100!! Boy, was David shocked and surprised! The box was a 'party in a box'. It had hats, cups, plates, napkins, streamers, a banner, and a fleece blanket~~all SpongeBob!! And it had 2 boxes of Hostess cupcakes. Very generous and thoughtful. We have his room all decorated. Yesterday the lady from the schoolroom/playroom came and gave David a big banner that the kids made, and a balloon. We gave it to him today. Then, Cindy, one of the RNA's, gave David a balloon, a 1/2 gallon of vanilla ice cream and a 2-liter bottle of root beer! So David had a root beer float (actually, 2 of them). Other kids had some too, so that was fun. Overall, all things considered, he had a pretty good birthday. We are going to celebrate his birthday as a family next Sunday. We should be out of here by then! So he will have a 'delayed' birthday; but that is nothing new in the Koury family!!

Thank you for all your prayers and Birthday wishes to him~~~it means a lot to him. This is definitely a birthday he will never forget! Please continue to pray for him, he is still in some pain. He wants the chest tube out, so he is trying to do his incentive spirometer, but it hurts really bad with 2 busted ribs; one on each side! Poor kid. But, like I said, he is a champ! He is impressing a lot of people around here. He is one tough kid!

Gotta go. You all take care. Thanks again for all your prayers. God bless you. We love you all.

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FRIDAY, APRIL 11, 2008 09:45 PM, PDT

Good evening. Here is the latest update on David. He went into surgery at 8:40 and they called us at 1:05 that he was done. He wasn't in recovery yet, but the surgeon was done and wanted to talk to us. She said she got out 2 nodules; one large one from the upper lobe, and one small one from the lower lobe. He tolerated the surgery very well. They took him to the PICU around 2:30 and that is where he is now. Rachel is staying the night with him. Jeremy and Lucy are here, too, yay! The 4 kids are leaving tomorrow, so Rachel wanted to spend as much time with David as she could. He woke up and asked if it was still Friday, and we told him yes. He asked if he was going to sleep through his birthday, and we told him no. He is doing quite well; getting feisty and all. The surgeon told us that the other incision on his right side looks very good, and she took off most of the steri strips. She said he will be okay for chemo in a week, but she said he could wait 2 weeks; give him time to spend at home first. We will be talking to the oncologist soon so we can find out what the next step is. We are soooo glad this part is over! He is now cancer free, and we are praying that he stays that way forever!!! It feels so good to say that! He still has chemo to go through, there could be rogue cells that need to be killed. We know we are not technically 'out of the woods' yet; but, again, I am not going to borrow trouble. I am just going to rejoice in the fact that the cancer has been removed from his body. 4 very major surgeries in just barely 2 months is a lot for anyone, and he is handling it like a champ! We are so very proud of that child. He has been through more in 13 years than most adults will ever go through in a lifetime! Please continue to pray for him and his healing. Thank you for your prayers, they mean the world to us.

Please pray that he can be out of the PICU tomorrow; the surgeon said she thinks he only needs to be in there overnight. We would like him to be out of there as soon as possible. Please pray that he gets his private room again on 5 surgical (room 5307). He does NOT have the private room in the PICU this time, but it is ok. But if he can't have the private room on 5 surgical; please pray for a window bed~~he REALLY needs a window. Thanks.

I better go. You all have a good day tomorrow, and pray that my little boy has a good birthday. God bless you all. We love you.

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THURSDAY, APRIL 10, 2008 08:53 AM, PDT

Quick update. We will be leaving this afternoon to go to Oakland. We wanted to leave this morning, but we have to wait for the refrigerator repairman to get here. Oh yeah, I forgot to tell you, when we got home last week, our refrigerator was not working. Fortunately, we have a warranty on it. We think it is the compressor that went out. Anyway, he us supposed to be here between 11 & 2. We hope he is here closer to 11 so we can get out of here!

Please pray for our trip, and for David tomorrow. I won't be able to update again until after surgery, so please remember to keep him in your prayers. Thank you.

The tube feedings are working great! David is now up to 100 pounds!!!! We are so excited about that!

Gotta to. Please just remember to pray for David tomorrow and all next week. Thank you for your prayers. Also, thank you to those of you who have donated to the account we have set up. I have no other way of thanking you, since I don't know who you are. But we pray that God will bless you as you have blessed us. Thank you so very much!

God bless you all. We love you.

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TUESDAY, APRIL 08, 2008 09:02 PM, PDT

Good evening. David had a good day, today. I had to run a couple of errands, and he went with me. He said it was good to be outside. Connie called and said his counts were great (better than 2 weeks ago when he went into surgery), so we weren't worried about him being out. Then for dinner Jennifer took him to sushi~~he was so happy! He walked with his walker, and he is getting faster at it. He is very happy to be walking.

Connie is so sad that David has to have surgery the day before his birthday. I told her that it is what it is; nothing we can do about it. We can't delay this kind of thing; cancer waits for nobody!! So, this cancer has stolen David's birthday from him. We are going to have to make it up to him; poor guy. I'm telling you, the kid can't catch a break! But he is such a trooper. Dr. Raphael said that the best birthday present David could get would be the cancer out of his body. David said, "I hate that kind of logic". We asked him why and he said, "because I can't argue with it"! Let me tell you, that child never ceases to amaze us! He is really something!

Please continue to pray for little Teagan; she is really struggling physically. I am so glad her chemo is over; but she is suffering the effects of the chemo and the cancer. Please remember her in your prayers. Thanks.

Well, I need to go. You all have a good night. God bless you. We love you.

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MONDAY, APRIL 07, 2008 09:34 PM, PDT

Good evening. I heard from the surgeon today. David is having surgery Friday, April 11 (the day before his birthday) at 8:30am. We thought it was going to be in the afternoon; but, since he is allergic to latex, he is first on the list! I am glad, that way he won't have all day to dread the surgery. We will get it over with first thing in the morning. We are hoping this surgery won't last as long as the other one (5 hours), but we have no idea. David is dreading the surgery, but wanting to get it over with. We are so thankful it is scheduled and it will be over soon. Then we will be able to say that the cancer is out of his body! Prayerfully, it will be out of his body for good!! He still will have weeks of chemo, but we are praying that once the chemo is over it will be over for good! We will not 'borrow trouble', so we will take it one step at a time. Right now we need to get through the surgery. Please pray that David can enjoy this week at home. Thanks.

I want to thank each and every one of you who read this site and pray for us. I have no idea who reads this, but God does. Thank you for writing to David~~he does enjoy reading what everyone writes. Thank you again.

Well, I need to get ready to get David's feeding bag ready. He is in the shower right now, and as soon as he gets out we need to start setting up his tube feeding. You all have a good evening. God bless you all. We love you.

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SUNDAY, APRIL 06, 2008 10:31 PM, PDT

Sorry I didn't update sooner. David had a quiet weekend. We did go to church today; it was good to be there. We can't always be there, and we miss it when we aren't there. As I said before, they are our 'family' and we are thankful to have them.

The feeds are going real well. David is tolerating them very nicely. The nurse told us that he is receiving about 3 ounces an hour all night long. That is a good thing; it is keeping his tummy working. He really doesn't mind the tube at all. He is eating during the day, but still not that much. Connie told me not to worry too much about what he is eating; he is getting balanced nutrition throughout the day with what he eats and the night time feeds. So I am not worrying about it at all.

Please remember to keep Teagan in your prayers. She is done with chemo, but she is still having a hard time physically. She is so little, and she is struggling with some cancer/chemo related issues. Please pray that she heals quickly and bounces back to her old self again. We have really grown to love her and her family.

Well, that is all that is happening now. I do the blood draw tomorrow. Also, I call the surgeon tomorrow and find out if David will for sure have surgery on Friday. He hopes so, he wants it over with so very badly. Please pray that the surgery can be done on Friday. We need to know, so we can call our social worker and reserve the Family House. Also the kids need to ask for the time off. We need this time behind us (the surgeries). This whole experience won't be behind us for some time, but we need all the surgeries over! My poor baby has been through so much in the past couple of months. Anyway, please pray that this part will be over soon. Thanks.

I will post when I find out what is happening. Keep checking back, sometimes things happen at lightening speed around here! God bless you. We love you.

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FRIDAY, APRIL 04, 2008 07:59 PM, PDT

Oh, another thing I forgot to tell you. Remember I told you about the new baby fuzz on David's head? Yeah, well, it's gone. He had the newborn baby bald spot on the back of his head, now it is all gone. Oh well, it will come back again. Thought I would just let you know. Talk to you later.

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FRIDAY, APRIL 04, 2008 04:18 PM, PDT

I forgot to tell you that after 3 nights of tube feedings David has gained a pound! He now weighs 95.4 pounds!!! We received his tube feeding supplies today; so we will start the tube feedings at home tonight. Please pray that goes well! Thanks!

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FRIDAY, APRIL 04, 2008 03:24 PM, PDT

We are home!! YAY! We left yesterday around 6:45p.m. and got home around 11:00. David got his Subway fix; but he is still down to just a kid's meal (4" sandwich). Then he started to feel sick; Daddy was going too fast around the turns in the mountains! David opened a window (it was freezing!) and kept eating peppermints, and Bryon slowed down and David didn't throw up! We really don't want him to throw up with the feeding tube in. We don't want him to throw up the feeding tube! But he didn't throw up, and we got home, so he is happy now. He is still in a little bit of pain, but he doesn't complain. I had to talk him into taking a 1/2 of a percoset! We keep trying to convince him that his body will heal faster and better when it is not trying to fight the pain, too. But he is like me; I don't take meds unless I absolutely HAVE to! But he is doing pretty good.

I heard from Connie, and David's surgery is possibly the afternoon of April 11. That is when the surgeon has an opening. Please pray that David can have the surgery then, he wants it over with. Today he said he is not looking forward to it, but wants it done. Please, please pray it happens that day. Thanks.

Well, that is all that is happening here. I am just doing laundry and trying to do the housework. Have a good day, and I will keep you posted on how David is. Thanks for caring and reading. God bless you. We love you.

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THURSDAY, APRIL 03, 2008 03:34 PM, PDT

Well, we are waiting on the results of the chest x-ray they took earlier. We really want to be able to leave today, but we are not sure. There was a trauma, so the surgeons are taking care of that. David wants to go home. We will see.

He has been working with physical therapy; and he is doing great! He is walking with a walker. He can't use his crutches because of the incision under his arm. But he is working those muscles that haven't been used in 6 months~~boy do they not want to work! But David is a trooper and he is doing the excersises when they ask him to. And he looks good walking with the walker; I will get some pictures of that soon.

Well, that is all that is happening here. We are just playing the waiting game again. It was really good to see Teagan here. This was her last chemo treatment. She has her scans on April 28, please pray for those scans to come back clear! I am praying that this horrible cancer doesn't go to Teagan's lungs; I don't want her to go through what David is going through right now. Thank you for remembering her in your prayers, too. I am posting a picture of her on here so you can put a face to her name. Thanks.

Well, nothing else to say. You take care and I will let you know if we get to go home or not. God bless you all. We love you.

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WEDNESDAY, APRIL 02, 2008 08:11 PM, PDT

Check out the new pictures! I need to go to Family House. I will post tomorrow and let you know if we know when we will be coming home. Thanks for your prayers. We love you.

P.S. Thank you Field Services; Motor Carrier; O.L.B.L.; and Employee Development (Kelli Quintero's team) for your VERY generous gift of money and food! The food has come in handy this week. Thank you again.

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WEDNESDAY, APRIL 02, 2008 12:53 PM, PDT The chest tube is out!!!! It went very well. The tape removal was worse than the actual tube removal. David was really scared, but he didn't even feel it coming out. He is one very happy camper. Now he is sitting up eating lunch, then he is going to take a shower. We might be able to go home tomorrow, we will see. That would be great! I will let you know if anything else happens. Thanks for your prayers. God bless you and your families. We love you.

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WEDNESDAY, APRIL 02, 2008 08:37 AM, PDT

Here is the haps. One of the surgeons came in this morning; at 3:00 mind you; and told me they are going to be removing the chest tube between 9 and 10 this morning. I hope that is the case. They have to do a chest x-ray first. David had a bad night last night; he was in a lot of pain. The surgeon told me that once they take the chest tube out he won't have as much pain. And then once his pain can be managed and under control, we can go home!!! YAY!! So we can't wait!

I will post as soon as I know anything. Keep checking back! God bless you. We love you all.

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TUESDAY, APRIL 01, 2008 04:33 PM, PDT

Ok, no chest tube removal today. Hopefully tomorrow. The chest x-ray (they take one every morning) this morning showed that a small part of David's lung was collapsed. So as long as that part is collapsed, he has to have the chest tube in. Please pray that he gets it out tomorrow, it is causing a lot of pain. He is on a lot of dilaudid and ativan. They have told us that it is most likely the tube causing most of the pain, so we want it OUT!! Again, please pray that he can have it removed tomorrow.

The tube feedings are still going well. He is still eating during the day; but, again, not that much. The tube feedings are just supplemental, so he still needs to eat during the day. But he is tolerating the tube feeds very well. Hopefully once he puts some weight on he will feel better and want to eat more. That is the hope, anyway.

Well, just thought I would update you on the chest tube situation. Hopefully he will be 'tube free' tomorrow. Thanks for the prayers. God bless you and your families! We love you.

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TUESDAY, APRIL 01, 2008 08:58 AM, PDT

Good morning. How is everyone today? We are plugging along here. David did get the epidural out yesterday. He was very happy about that. Then he got the catheter out, YAY!! He is so silly. He was afraid that when he was asleep that he would forget the catheter was out and pee the bed. I told him he wouldn't forget. He is a goofy kid! But he slept pretty good last night, so Bryon said.

We hope to get the chest tube out today. We still are not sure how long we are going to be here. We are almost afraid to ask! We don't really see how we will be here much longer than a week, tho. But we shall see. David is a little scared that the removal of the chest tube is going to hurt, so we are going to make sure we give him his pain meds before they take out the tube. Maybe if they do it while he is asleep..... Poor guy. He has just been through too much already.

We did get the surgical report yesterday....Connie knew I wanted it. It says, "the first biopsy was sent to pathology for frozen section which reveals the majority of the metastatic tumor is necrotic with only a few viable cells. This is indeed good news." So we were happy with that. They did get all the cells they could feel (remember, these cells are bone) and it totaled 9. We are not sure how many are in the left lung; we will find that out when he has the other surgery. But at least they are out of his right lung!

Well, I will let you know how the chest tube removal goes. You all have a good day. God bless you. Thank you for your prayers. We love you.

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MONDAY, MARCH 31, 2008 07:44 AM, PDT

Here is the latest update. We are out of the PICU!! That is good. But David does still have the chest tube; so we are in 5 Surgical. BUT....we have the one and only private room in 5 surgical!! And it is huge!! So it is fine that we are out of PICU. Although we did get to know the nurses over there. But we got a familiar face when we got here. A nurse named Colleen, who I really like! She was David's nurse the first night he was in 5 South back in October. On October 14, to be exact. She said she thinks about us a lot. She is a real sweet lady. So we are happy campers over here. David just doesn't like to share his room with a stranger~~~can't say that I blame him!

The feeds are going real well. He is still eating during the day, although not that much. Yesterday he had Rice Krispies; Strawberries; instant breakfast; chicken noodle soup for lunch and dinner; a muffin; and 2 pieces of bacon. That was it for the whole day. See, not that much. That is why he still needs the feeding tube. He needs the protein, and he isn't eating much of it by mouth. But the feeds are going really well.

They are going to be removing his epidural this morning. It was leaking fluid yesterday, and last night his back was bleeding at the site. And this is about the length of time he can handle having it. They are giving him IV pain killers, so the pain will still be managed. He might get a PCA pump, too. He likes the epidural out because then he can get the catheter out. We like the catheter in only because he doesn't get up every hour to pee! But we do want the catheter out, too.

David was sitting up in bed yesterday. He says it hurts to move, but he still does it. He is such a trooper! The thing he really hates to do now is cough. Poor guy. He needs to clear his lungs, but with a broken rib he can't cough. So we are making him sit up as much as possible. They also want him to sit up so the fluid can drain down, and be reabsorbed by his body; then he can get rid of the chest tube. Today they are going to disconnect the suction from the chest tube and see how he does. If he does well, he can get it out today or tomorrow. YAY!! He really wants that out.

Well, that is all the news for today; so far. I will post if things happen later today. You all have a good day. God bless you. We love you. Thank you again for all your prayers.

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SATURDAY, MARCH 29, 2008 09:17 PM, PDT

Ok, here is the update. David came through surgery just fine. He went in at 9:00 and was in recovery around 2:15 or so. He does have a chest tube, but NO ventilator!! Woo-hoo! The surgeon told us before David went in to surgery that the CT scan showed 20 nodules. She told us that she removed at least 9~~maybe that is all there was in the first place. She said that she felt his lungs 'back and forth' several times. Some of the nodules were very tiny, 2 were large. The 2 large ones showed a lot of necrosis; we will find out probably on Tuesday how much 'a lot' is; the pathology report should be back by then. They had to put a larger than normal breathing tube in his left lung because they had to collapse his right lung to work on it. He said his throat is a little sore, and he is hoarse, but otherwise he is doing good. He is still in the PICU, don't know when he will leave that. We are hoping that he won't be able to leave the PICU until his chest tube is out, because then he will be able to go on the Oncology floor, not the surgical floor. It is actually the same floor, but a different 'wing'; and we know most of the nurses on the oncology wing and we prefer to be there. Please pray that we don't have to go to surgical.

Well, David did throw us a little curve ball. He got another pressure sore during surgery. It is on his left hip. They said he is so doggone skinny that his tissues just break down very fast. So he is now on a feeding tube. They will be giving him 'feeds' all night and let him eat during the day, and give him his 'feeds' all night and let him eat during the day, etc. Yes, we will have to do that at home, too. But we will do what it takes to get him healthy! He needs the protein, and so we will do what we have to do. I will post pictures as soon as I get a chance.

Well, I guess that is all. That, or I am just too tired to think! You all have a good night, and I will post when I can again. God bless you all. We love you. Keep praying! Thank you.

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SATURDAY, MARCH 29, 2008 09:49 AM, PDT

Quick update for now. David is out of surgery and in the PICU (Pediatric Intensive Care Unit). We cannot use our 'puters or cell phones in there. I will update tonight; I am at the Family House tonight. Check back! God bless you. We love you. Keep praying!

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WEDNESDAY, MARCH 26, 2008 02:15 PM, PDT

Good afternoon. How is everyone on this beautiful Spring day? Well, it sure is windy here! But that is really nothing new; and I love the wind. Our Awesome God created a beautiful world, didn't He?

Not much is happening on the Koury Cancer Front. David is doing school, as best he can, and using his CPM machine for 4 hours a day~~sometimes more hours. His knee tends to stiffen up when he hasn't used it, but it loosens up rather quickly. It is soooo good to see that knee bend! He is up to 70 degrees now~~started at 20. Dr. O wants him to get to 120 eventually; and we are confident that David will! We will take the CPM machine to the hospital with us and he will use it there while he is recovering from surgery. We hope to have him on his own two feet by summer! He will still need the crutches for awhile, but at least he will be 'walking'! I can't wait to post pictures of that!!

We are getting ready to go tomorrow. The girls are coming with us, and Jeremy and Lucy will meet us there tomorrow night. Then they will probably go home on Sunday~but maybe Saturday. Jennifer and Rachel will go home with Jeremy and Lucy, so it will be just Bryon and me at the hospital. We don't know how long we will be there, but I will try to keep everyone posted.

David is getting a little nervous~~~can't say that I blame him. We know everything will be fine. They will get the cancer out of his right lung, and then get it out of his left lung on April 11; and then we can go on knowing that there is no more cancer in his body. Even if he relapses, we will enjoy the time right now while he is cancer free!! He will still have to do the chemo; but he is in God's very capable hands. We refuse to 'borrow trouble' and so we are not even going to entertain the thought that he could relapse. We will cross that bridge if and when we have to.

Well, I am trying to finish the laundry. I got the whole downstairs cleaned (yay!) so the girls won't have to come home to a messy house! We have to do the grocery shopping tonight, and I have to run to the bank. I will post and let you all know how the surgery went. You all have a good afternoon, and I will post when I can. Take care. God bless you. We love you.

P.S.~~I just want to say thank you (again) for your prayers~~~that is the best thing you can do for us at this time. Just 'stand in the gap' for us. You have no idea how much that means to us, or how much we appreciate it. Thanks again.

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TUESDAY, MARCH 25, 2008 10:03 AM, PDT

Good morning. How is everyone this morning? Our weather is beautiful! Windy, cloudy, and it looks like it just might rain! That would make Rachel happy~~today is her birthday! She loves storms, and that would be a birthday present from God! I can't believe that my Rachel is 20 years old! Yikes! Where has all the time gone? In just a couple of weeks (after David's birthday) my kids will be 26, 21, 20 and 14! Wow! I am not sure if my kids getting old makes me feel old, or keeps me young!

We weighed David the other night. All the food I am stuffing down his throat isn't helping! He weighs 94.4 pounds! Grrrr! Well, we are doing our best, that is all we can do. It is too late to 'beef him up' before surgery, but hopefully afterwards we can.

I got a call from Connie, and David's counts are good for surgery. He does have to have one more GCSF shot today, but that will be the last one before surgery. I will do labs tomorrow instead of Thursday; they want to make sure his platelets don't go down too low. Then we have to leave pretty early on Thursday morning; David's first appointment is at 12:00 with the pediatric surgeon. Then he has his appointment with Dr. O at 3:30. Both of these appointments are in San Francisco; but of course they are in two different parts of town! Oh well, story of our lives! Then we go to Oakland to spend the night before his surgery on Friday. But so far, things are right on schedule.

Thank you, all of you, for your prayers and your support and your love. I know we will get through this, somehow, but the support of all of you is making this time easier. Thank you for understanding me when I need to 'vent' on this site. Again, I am journaling my feelings and my thoughts, and I am 'allowing' you to share in that. I have been criticized for what I have put on here, and I just want to say that these are my feelings; please bear with me. Thank you.

Well, I gotta go. You all have a good day. We don't know what we are doing for Rachel's birthday~~she hasn't said yet. We will be getting her a Bible for her birthday~~~that is what she really wants. So sometime we will go get it for her; The Manger (our local Bible bookstore) is open until 7:00; so we might go after work. We'll see. Anyway, God bless you all. We love you.

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MONDAY, MARCH 24, 2008 07:37 AM, PDT

Good morning everyone. It is a beautiful morning~~just a little bit of frost. I hope you all had a nice Easter. Ours was quiet. We did go to church, David wore a mask. He is healthy, we just need to make sure he stays that way~~surgery is Friday. The message was wonderful~I really felt the Lord speaking to me. Thank you, Adam.

Jeremy and Lucy didn't come over because Jeremy hurt his back on Saturday; so Bryon and I went over to their house to bring them their Easter buckets (not baskets this year). It was good to spend some time with them at their house. Rachel bundled David up and took him for a walk in his wheelchair. It wasn't that cold, and it was good for him to be out getting some fresh air. He had fun.

Please remember to keep praying for David. The bottom line (as we see it now) that I haven't wanted to admit is this~~~~we need a miracle in David's life. Without that miracle, he will die. Maybe God wants everyone to know that it was HE that healed David, NOT us! WE can't do anything, only HE can. I know He is the one guiding the doctors, He is the one in control. Only He can work that miracle in my son's life. Humanly speaking, the chemo isn't working, the cancer is spreading, etc. But God can intervene and cure David and the doctors will have to admit that it wasn't them that did it!! Please pray that it is God's will to spare my son's life. I can't even imagine life without my 'baby', nor do I want to.

Anyway, I need to go, I have a LOT of housework to do (story of my life). I want to make sure the house is cleaned before we leave on Thursday. You all have a good day. Please remember to pray for that miracle. Thank you. God bless you. We love you.

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FRIDAY, MARCH 21, 2008 09:39 PM, PDT

I hope everyone had a great day, today. David got his Subway today~~~but he is down to a kid's meal. For those of you who don't know, that is only a 4" sandwich. But he ate the whole thing, plus the apples, plus he drank the juice. That is not nearly the amount of food he used to eat, but we are praying that someday he will be eating his footlongs again!

He got a surprise today. Rachel brought 2 of her co-workers over and they gave David a bunch of balloons and a Bionicle. And some ice cream! Rocky Road (yummy) and Cookies and Cream (yummy). That was a nice surprise for him. Then Jennifer took him to work with her for the afternoon. It was only for a couple of hours, but he said it was fun. He did his school at Jennifer's work, so that worked out good. Bryon and I were able to go to the store together. Usually we can't do anything together unless one of the girls is there, because David cannot be left alone. So we got to do something together. That was nice.

He is feeling ok today. He didn't eat much dinner, but he tried. We had b-b-qued tri tip, baked potatoes, corn on the cob, and salad. He ate a bit of tri tip, and a couple bites of corn. That was it! Well, then he did have some Rocky Road ice cream. So I guess overall he didn't do too bad.

Well, I need to go. The kids are coloring Easter eggs tonight instead of tomorrow night. It is just too hectic the night before Easter to do the egg dying. You all have a great evening. If I don't post before hand, have a Happy Easter celebrating the resurrection of our Lord. God bless you all. We love you.

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THURSDAY, MARCH 20, 2008 10:15 AM, PDT

Good morning. How are y'all today? We are doing ok. Again, David is doing schoolwork in front of the fire~~well, in his chair across the room, but still. He is always cold these days, so he is also under his 'snuggle blanket' with the dogs. He has his leg in the CPM machine as he does school~~~hey, he is multi-tasking!! We are so happy to see his leg moving. When we take the machine off, he is able to move his knee all by himself! It is so wonderful!

He is on more meds; he has thrush, again. So he is back on the anti-fungal (diflucan) for a week. But Connie called and the GCSF is doing it's job and his counts are great! So I only have to give him a shot every other day. When we draw labs on Monday we will see if he has to back on it daily then. His surgery is in one week from tomorrow, and they don't want his counts to be low. But so far they are great! 5 days of the GCSF shots helped.

David is eating better. I am giving him the zofran, and it is keeping the nausea at bay so he is able to eat. I can't leave him alone; one day we will be able to, so I can't go get him Subway, but we probably will tomorrow. It is payday tomorrow, and whatever it takes to get him to eat!! I have errands to run, anyway (and Bryon is home on Fridays), so I will bring him back Subway. He is drinking an Instant Breakfast with breakfast and dinner, and some protein powder drink, so I hope that is working. He is still pretty bony, clothes hide a lot! Anyway, just thought I would tell you that he is starting to eat a little more.

Today is the first day of Spring, and the flowers are starting to bloom; the trees are budding; the birds are singing; etc. God gave us such a beautiful world, and His promises are new each day. We have the evidence of a new birth every Spring! God has promised us an eternity with Him if we trust Him as our Savior and Lord. If David should die, I have the confidence and assurance that I WILL see him again; standing with Jesus! I hope and pray he doesn't die (duh!), but at least I know where he is going, and I will meet him there. That is the only thing that gets me through the thought that he very possibly could die. As we celebrate this Easter holiday; I hope you all remember what the reason for the holiday is. Because Jesus died and rose again, that is why we have the promise of an eternity with Him. Again, we could NOT go through what we are going through without God in our lives. It is hard enough with Him, we know we couldn't do it without Him!

Well, as usual, I gotta go. Thank you for your prayers. Keep reading. God bless you all. We love you.

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TUESDAY, MARCH 18, 2008 09:37 AM, PDT

Good morning. How is everyone this morning? We are doing ok. David and I are downstairs in front of the fire; David is busy doing schoolwork. Very cozy. I just have a quick minute to update; gotta get to my 'spring cleaning'. The weather is finally getting a little bit warmer~~~in the 50's now. So I want to get as much done as possible before we go back to Oakland.

The St. Baldrick's event last night at the Coconut Bowl was great! They had a LOT of people shave their heads for Childhood Cancer Research. I heard over $100,000 was raised! That is so awesome. Of course, that is still not enough, but it is a start. The turnout was fantastic. And it was good to see David's picture on the 'Wall of Courage' that they say they take with them everywhere. It was a good evening.

I am going to post a letter that Bryon wrote. Please read it carefully, and pray for us as a family.

I think I need to clear up a misunderstanding.We've heard it said that because David had surgery, he's doing much better now. NOTHING could be further from the truth! His cancer is no longer responding to the chemo and the tumors in his lungs are growing and spreading. This is why the urgency to do the lung surgeries now.The surgeon told us that there is a very good possibility that we will be doing these same surgeries a year from now. To cut down the chance of this happening, the oncologists will be adding 2 new drugs to his chemo regimen. Possible side affects of both these drugs are infertility and leukemia. To make matters worse, they don't know if these 2 drugs will have any effect on his cancer at all. They are doing a study on these drugs to determine this. The study is not complete, so until the study is complete and all the data comes back, they have no idea. These 2 chemicals will also extend the length of his treatment by 11 more weeks. They have had numerous studies over the years and the results are that they are still using the same old treatment they used 20 years ago. Nothing else they have tried has had any real effect.When osteosarcoma spreads to the lungs, the survival rate drops from 60 ~ 70% (which on it's own isn't very good) down to 30 ~ 40%. Imagine taking a revolver that holds 3 bullets and putting 2 rounds into the chamber, then spinning it and putting it to your head. Do you like those odds? I sure don't. That revolver is being held to David's head with the trigger being slowly pulled. We pray it is the one empty chamber!David will soon be going thru 2 very difficult surgeries. They have to break ribs (1 on each side) to get to his lungs. The chemo slows down the healing process tremendously, so it will take a long time for those bones to heal. If you have ever had broken or even bruised ribs, you know how painful this is. It will make using his crutches extremely difficult. He will no longer be able to lay on his side to relieve the pressure of the bed sore on his tailbone which may aggravate the sore.After each surgery, David will be placed on a ventilator for a couple days and will be totally sedated. If the 2nd surgery is 2 weeks after the first, then this cancer will have "stolen" his birthday from him. His birthday is the day after the second surgery so he will be asleep for the whole thing. As adults, that is not such a big deal, but kids love their birthdays.David is afraid of the surgeries because he knows he needs his lungs. He is afraid of what is going to happen to them. Remember, his first surgery they removed his knee and femur, the second surgery they removed some small intestine, some colon, and his appendix. He also knows these surgeries mean much more pain and he told me that he doesn't want to hurt anymore - he's tired of being in pain. He is also tired of being sick from the chemo and adding 11 more weeks to it is way too much. Prior to this week, we thought he had only 9 treatments left. Now it has become 20. It is almost as if he is starting all over again, except there are still 2 more treatments than the original plan called for.David is down to 93 lbs. The chemo has taken away his appetite to the point where he is barely holding his own. We are trying everything we know of to get the weight back on him before more surgery. The surgeries will also take their toll on his weight. A very effective drug called Marinol is a hunger stimulant. Our insurance won't pay for it and it costs over $400/mo. That is beyond our reach. He is very close to having a feeding tube. His lack of weight will also slow his healing from his surgeries and he tires very easily. Standing for only 5 minutes has become very difficult for him.Thru all of this he never complains, except when it is time to leave for Oakland. He has to force himself to do things, like eat for example. Even tho he has no energy, appetite (for eating), desire or whatever, he still does what he has to do or is asked to do without complaining. Like walk the halls 2 days after leg surgery to help wake up his bowels from anesthesia, when in reality his bowels were not asleep, they were dying and he was bleeding internally. This boy NEVER ceases to amaze me!I am sorry if this sounds so bleak and depressing, but this is David's life - his reality. None of this is "made up" and none of this is exaggerated.We truly don't know if David will live. Of course we are praying that he does.Please pray for us and especailly David at this time. And please continue to pray for our financial situation~~with the extra trips to Oakland; and my income wiped out; things are pretty bleak. I cannot even go out and get a job, I HAVE to be here for David. We need God to provide, but I have to trust, and I already told you about my difficulties in that area! Anyway, I need to go. You all have a great day~~this is the day that the Lord has made~and it is beautiful. God bless you all! We love you.

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SUNDAY, MARCH 16, 2008 04:44 PM, PDT

We woke up to a white world again! Is this winter of David's life ever going to end?!?! He still wasn't feeling that good this morning, so we stayed home. He really wants to go to church next week; after all, it is Easter! He wants to go, but he just doesn't feel up to it.

David had a great surprise today. The little twins I used to babysit came over for a visit! They are so sweet. And they are getting so big! We can't believe they are 3 already!! I have had them since they were 6 months old, and I 'lost' them about 8 months ago. But they sure miss their 'mama Kristi'! And they miss 'Day-Day', too (that is what they call David). We really, really miss them. But God knows best, and their mom was transferred to Reno. Hopefully I will get them back; their mom is looking at being transferred back to Carson City. I REALLY need the money, but God will just have to work that out, too. I figure God knew all this was gonna happen, so it is up to Him to work it all out. Anyway, it was really good to see Samantha and the girls.

Well, nothing else is happening today; except it is really cold and windy; yeah, nothing new about that! But nothing else is happening on the David front. Tomorrow is St. Baldrick's at the Coconut Bowl in Sparks. If there is anyone in the area and would like to go, please do. David is going to be honored on a wall they have their called the "Wall of Courage" and David will be featured on it; so will little Teagan! Please come and visit if you can. You all take care and I will post later. God bless you all. We love you.

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SATURDAY, MARCH 15, 2008 04:56 PM, PDT

I don't know if anyone is doing the math, but these new upcoming surgeries will make 4 very major surgeries for David in just barely over 2 months! Also, if things go the way they are planned, his second thorocotomy will be the day before his birthday! His first surgery was 2/4/08; and the 4th surgery will be 4/11/08; just barely 2 months apart. Just thought I would let you know all that. Thanks. God bless you!

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SATURDAY, MARCH 15, 2008 08:47 AM, PDT

Good morning. How is everyone this morning? It is snowing here right now! Glad we made it home before it snowed again. Glad we don't have to leave in the snow. Well, who knows, it could snow when we go back. This is only March, after all!

David had an ok day yesterday. He didn't eat that much, but I did make him drink a milk shake made with milk (2%), ice cream and instant breakfast. He didn't want to drink it, but I told him that was just too bad! The doctors and nurses and nutritionists all told us that they do NOT want him losing any more weight! Of course, neither do we. So he will just have to drink at least one milk shake every day! Man, I am so jealous. I wish someone would tell me I HAVE to eat all the butter, cheese, and ice cream I wanted! Of course, the difference is he doesn't want to. Continue to pray that his appetite will pick up. Thanks.

I am so thankful for the snow, and a nice warm house, and a nice warm fire! I love lighting the fire every morning, and I really miss it when we are gone. The girls aren't home enough during the day to always light a fire, so the house is a little cold when we are gone. But I make sure it is warmer when we are home~~it needs to be for David. I have to admit, tho, I am getting ready for Spring. But that is because then David can go outside, he REALLY misses going outside.

Remember I asked you to pray for Teagan? Could you please continue to do so? Her next chemo (she only has 2 more~~woo-hoo) has been delayed. She is in the hospital in Reno. Her ANC is 48 and the cancer, chemo, and traveling have taken a toll on her little body. Her poor mom is exhausted; please pray for her, too. Her name is Wendy. Teagan is only 7 years old, and the osteosarcoma was in her hip. Thank you for remembering them in your prayers. They are a wonderful family. Pray for Teagan's dad and brother, too. Thanks.

Well, I need to go. It is time to give David his meds and flush his broviac. You all have a good day, and I will keep you posted on what is happening here. God bless you all. We love you.

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FRIDAY, MARCH 14, 2008 05:05 PM, PDT

Well, we made it home. We didn't get to leave until around 6:45, but we got to leave! We got home around 11:00. Of course, it was snowing part of the way home; but David did NOT throw up! Yay! They gave him some ativan about an hour before we left, and I gave him some zofran because he started to feel nauseous. But he didn't puke, and we were happy. We took Bryon's little car, in the interest of the stupid gas prices, and it would be 'smellier' because it is alot smaller than my SUV so the back seat is closer! We were very happy he wasn't sick on the way home. He had the basin under his chin just in case, though! We did get his usual Subway, he just had a difficult time eating it. But the 'feast' is his new favorite! He just can't eat the footlongs at this point! Hopefully someday soon he will be able to again!

He is still feeling a little nauseous today. I am giving him some zofran, and that is helping. We did NOT come home with the appetite stimulant. Insurance won't cover it, and a month's supply of it is almost $400!! We are just gonna have to force him to eat. I bought some ice cream, some instant breakfast, and ovaltine to make him shakes. He is just going to HAVE to eat! We need him to gain some weight before surgery. Please pray that we can get some meat on his bones before surgery. The surgeries are gonna set him back, and we know he will be losing weight, so we need to make sure he has some on him to lose. Thanks for your prayers.

I got my delivery of GCSF (neulasta) today, I need to give him the shots so his white count will rebound fast. They don't want his count to stay down, he has to have the surgeries and a low white count could delay that and hinder healing. Please pray his counts come up rapidly.

Well, that is all that is happening. Thank you, everyone, for your prayers. God bless all of you. We love you.

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THURSDAY, MARCH 13, 2008 02:51 PM, PDT

We heard from the surgeon. David will have his first thorocotomy on March 28th. His second one will be 2 weeks later. They will go in through his side, split the muscle, break a rib, and get the cancer out. They will have to feel the lungs to make sure all the nodules are out. There was the option of waiting 4 weeks between surgeries to have a chemo treatment; but I said, "the chemo is not working so what would be the point of that? That would just be a waste of time", and the surgeon agreed. She said we have to be here the night before surgery~~we will be here anyway. David has his appointment with Dr. O on the 27th, so we will just come here after that. We were hoping for a little more time at home, but we need to get this over with. The surgeon, Dr. Wendy Su, said that the cancer cells do not seem that large, and she will remove them with as little lung tissue as possible. Please pray for David, he is terrified! He is not the only one, believe me! Please pray for all of us!

Please pray for me at this time. I will admit that I have a problem with trust, BIG time! I have been betrayed by people all my life, and that is why trust is hard for me, and I don't trust anybody. Has God ever let me down? Well, of course not, in God's eyes. And I guess not in my eyes, either, in the scheme of eternity. But on the human level~~~well, in my selfishness I want what I want. Like my dad to still be alive; like my son to not have cancer; like my son to not have complications at every turn; like my son's cancer to have not spread to his lungs, etc. I know that God loves David more than I do, and I know that God wants and knows what is best for David; but I have to trust that that is true. I know all the 'Sunday School' answers, so please don't tell me them. It is hard to put my son's life; daily; into God's hands when I don't know what that means! I know that God knows what is best for me, too, but is it in my best interest to have to watch my son die? I know God watched His son die, but there was a purpose for that, and God (and Jesus) knew it! My son is only 13!! I have to prepare (yeah, right) for the fact that he could die. I know that God only gives you grace for each day, and we are not to worry about tomorrow, but still. Again, please don't think I am being disrespectful. God knows I love Him; He also created me a human with human emotions and feelings. And, praise God, He allows me to have those human feelings. He knows I have a hard time with trust. Please pray that God will send people into my life that will help me learn to trust. People who won't criticize me and say that I 'finally understand' what they are going through. People who want to be a true friend (thanks, Laura, for stepping up to the plate). People who won't betray me so I can learn to trust. If that sounds like I am being selfish, that just proves you have NO idea what I am going through, and you are judging me. Please don't go there. Please keep in mind that this is my journal of this time in our lives, and I am allowing you to share in our struggles, triumphs, joys, troubles, and sorrows. I am baring my heart to you. How you feel about me because of it is between you and God!

We found out that we will probably be leaving here around 6:00 tonight. David has to hydrate for X number of hours after chemo, and chemo is over. He has received his last cisplatin~~forever! He has reached his lifetime toxicity level of cisplatin. So now he just waits while he hydrates. He is so hydrated now he is puffy. His face always gets puffy during chemo; Bryon calls it the 'chemo puff'. A couple days at home and it goes away. If we get to leave early, we will. They are sending us home with an appetite stimulant for David, which is a good thing. Anything to avoid the feeding tube~~that is the next option! We will try the stimulant first!

Well, he wants to go outside. Please continue to pray for our family. Thank you for your prayers. I will post when we leave, or when we get home, or sometime soon. We will get home in the dark, again! Oh well. God bless you all. We love you.

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THURSDAY, MARCH 13, 2008 07:10 AM, PDT

They say that 'no news is good news', well, I don't believe that. But we didn't hear from the surgeon yesterday. We were told she is in 'clinic' on Wednesdays, so we hope to hear from her today~~~we have to hear from her today. We are shooting for going home today, and we have to have everything in order before we leave. I will be giving David the GCSF shots again; they want his counts to recover fast so he will be ready for the 2 surgeries. This is the chemo that 'bottoms out' his white count, so they want it to come up fast. So it will be a busy 2 weeks preparing for 2 more major surgeries. My poor baby. Please continue to pray for him. He was crying last night because he is so scared about these surgeries. These scare him the most. He was nervous about the leg surgery; understandable; but not really scared (once he talked to the anesthesiologist and was reassured he wasn't going to wake up during surgery); he wasn't really scared about the abdominal surgery (he was too sick to care) because he said he knew it was to fix the problem and he would feel better; this surgery terrifies him. He says, "it's my lungs, I need my lungs". I don't blame him one bit for his terror. Even though we have explained that people have lung transplants and live, he is still afraid of them working on his lungs. Again, poor baby. I hate the fact that he is going through this.

He had a visitor yesterday~~~his Sunday School teacher from way back. Like, when David was 6 back. It was good to see Bob and Laura. Thanks for visiting, guys!

Please pray that we can go home today. The chemo will end around 1:30 this afternoon, pray that David will feel up to the long drive home. We REALLY want to go home. We have spent the better part of 3 weeks here, and we are ready to go home for awhile.

Well, I need to go. You all have a good day, and I will post when I know more information about the upcoming surgeries. God bless you all. We love you.

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TUESDAY, MARCH 11, 2008 06:41 PM, PDT

Ok, we got some news today that we have been dreading. David does have to have the lung surgery, SOON! Like in the next few weeks soon. Like he will be home for the 2 weeks and then he will come back, not for chemo, but surgery. We knew about the need for surgery, but we are pretty devastated for the reason why the urgency. Some of the lung lesions have grown. We don't have a lot of info yet, I will post as I know more. We just talked to the oncologist (Dr. Hastings) and Connie; they will set up the appt. with the surgeon who will do the surgery to talk to us and David. We don't understand why the cancer in his lungs is growing, it should be shrinking~~~he is getting chemo!! How can this be? I ask, again, how much is one child supposed to have to take?!?!?! Now he is looking at 2 more surgeries~they only do one lung at a time. He will be in ICU for a few days after each surgery with a chest tube. He might be on a ventilator for a couple of days after each surgery, so he will be sedated. This is so unbelievable to me!! I will post after we talk to the surgeon, as I will have more information then. Please pray for David; he is terrified to have this surgery. They said they will keep a close eye on him~~he likes to throw curve balls! The CT tech last night had the same reaction about David's intussusception as everyone else!! He said, "I have never seen that in a child his age~~that is for 2-year-olds!" So, they are going to keep a very close eye on him. Anyway, I will post more as more info comes in. Have a good night~~~I don't think we will be sleeping much! God bless you all. We love you.

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TUESDAY, MARCH 11, 2008 03:22 PM, PDT

Ok, things have calmed down here; with the exception of Brooke~~~she is flying high! She got her picture with Robin Williams~Bryon took it. She is sooooo excited. She acts like a 15-year-old girl; it is so cute. She is all 'star struck' over meeting him. Of course, she is from Ohio, so has never even been that close to a star before. So we were happy to help make her day. She can't wait to tell all her friends and family back in Ohio.

Anyway, it was exciting. David spent the weekend home watching Aladdin~~~how ironic is that? He had never seen it before; he was just an infant when it came out. So he was pretty excited to meet the voice of Genie. It was very sweet of Robin to come to David's room. He said he totally understood David's inability to leave the bed with the CPM machine on; he had one, too, after his knee surgery. So David and Robin Williams have something in common; knee surgery and using a CPM machine. They could compare wound stories. I kinda think David has Robin beat, though. He spent a bit of time looking at the pictures that David was looking at on the 'puter, and chatted for awhile. He said that Aladdin was his favorite movie~~and his first animated one. Then he shook our hands and left to go to the schoolroom downstairs. Again~~~the only 'private showing' was our room. The mom of David's roommate is so excited that Robin came to see David, because her son got to see him, too. Her son is here because of sickle cell~~~very common around here! So that was the excitement for today.

We hope and pray every one is having a good day. I really hate seeing the 'red devil' going into my son; so it better be doing it's job and killing the cancer cells!!!! I totally refuse to believe that my son won't beat this!! Please continue to pray diligently for him. Thanks.

I need to clarify something I said awhile back. I said we NEVER get visitors. Well, I meant David doesn't get visitors. We have had some longtime friends come (thanks, Larry and Mush); but David doesn't remember them. Then have been 'in the picture' for many years~~before David's time. Their younger daughter and our Rachel have been friends since they were toddlers. I appreciate their visits more than I can say. They were there with us in UCSF when David went for his endoscopy. They have been there for us all the time~~~even though it is a drive for them. Thanks guys!!

Well, you all have a good day. I will post more if anything happens, again. I guess sometimes you never know. God bless you all. We love you. Hey, Bob, we look forward to seeing you tomorrow. David is looking forward to having you visit him; since you have known him since he was very little. Not quite a toddler, but 6 isn't too far away from it! Drive careful.

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TUESDAY, MARCH 11, 2008 02:19 PM, CDT

We just saw Robin Williams!! He came to the hospital, and David was using his CPM machine so he was unable to go to the playroom to see him. So Robin came to our room~~~~ONLY our room! This was the only room in the whole hospital that he gave a special appearance to!! I will post more later. Check out the pictures!!

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TUESDAY, MARCH 11, 2008 01:22 PM, PDT

David started chemo!! Yay!! Finally. His urine finally cleared so they could start. He is supposed to be 10.05 or less to start chemo; his was 10.10 for over 12 hours! They gave him a bolus of hydration, and he finally cleared! So now we wait. In two hours they start the Cisplatin (he is now receiving Doxorubicin~~the 'red devil'). This will be his last Cisplatin. The doxo runs for 48 hours straight, the Cisplatin runs for 4 hours, 24 hours apart. So, I don't see us going home on Thursday! Oh well, that's life. At least we have a big room, by the window! We will come home on Friday. Oh well.

I will post later on how things are going. Please pray that he won't be too disappointed when he finds out we won't be coming home until Friday. Thanks for praying. God bless you. We love you.

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TUESDAY, MARCH 11, 2008 07:25 AM, PDT

Just a quick update for now. David has NOT started chemo yet. He has been hydrating for well over 12 hours, and his urine level is still too high to start chemo. The nurse said he was dehydrated, so he is requiring a lot of fluids to get him up to where he should be. See, I told you the poor kid can't catch a break! This whole experience has taken a toll on him and his body. This is the proof of that. We don't know for sure when it will start, but I will let you know. We are still hoping to be able to go home on Thursday; but we will see. Oh, by the way, the boy in the room with us is 19!! I never would have guessed him to be that old! His mom stayed with him last night, she is a sweet lady. They were pretty quiet, no major complaints other than having a roommate sucks; even a good roommate. Every child here should have a private room. Sorry.

Well, Bryon is here so I am going to go to the Family House and take a shower and change my clothes. I will let you know when they actually start this 'red devil'. The sooner they start, the sooner we can leave! God bless you.

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MONDAY, MARCH 10, 2008 09:58 PM, PDT

Before I go to bed I have one more update. When we got back from David's CT scan, we were moved again. This time it is a pretty big room (Wendy, it is 5324) and we have the window!!! And it is a big window/bed so even Bryon can fit! It is not a private room, but we will survive. The boy who is in here too looks to be about David's age; maybe a couple of years older. So, I am sure we are here for the rest of the stay. We don't have to worry about them kicking us out of this room! So we had 3 rooms in 7 hours! I wonder if that is some kind of record.

Like I said before, the cancer, chemo, surgeries, and all the trips here have taken a toll on David. He is sad, depressed, won't eat, and has no energy. The doctor told him that he needs to eat to build up his immunity so he can fight the cancer; please pray that he can eat. All day today he had 2 scrambled eggs and a 6" sub from Subway. And the sub took him about 5 hours to eat. He just eats a few bites and he can't eat anymore. Please pray for his appetite! I know I keep asking you that, but I can't stress to you how horrible he looks. Maybe I will have to post a picture of him on here~~yeah, I don't see that happening. There is no way he is gonna let me take a pic of him in his undies!! I guess you will just have to take my word for it!

Well, we are going to go to bed. I will post tomorrow and let you know when chemo, this one is the 'red devil', starts. Have a good evening and God bless you all. We love you!

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MONDAY, MARCH 10, 2008 06:38 PM, PDT

Well, we made it here safely. We got here at 1:00 and we got to our room at 1:45. We got a private room. Now, don't get too excited, that only lasted 1 1/2 hours, now we are in the suckiest room in the hospital! This is the same room we were in Jan. 9-12. We had a nurse tell us it is the worst room in the hospital. And it is not a window bed. So.....we are just trying to accept being here under horrible conditions. We have had this room (and this bed) before and we lived through it, so I suppose we can do it again! It is what it is, and we will be fine. We were just frustrated at the 'tease' of a private room! David is pretty disappointed about it, but what can I do? At least it seems we have a good roommate this time. A little boy with sickle cell who will have gall bladder surgery tomorrow. He is 12, so we are getting closer to David's age! We are still hoping for a private room to open up, though.

David lost weight from Friday until today. We are VERY concerned about him. When he is just in his underwear he, no lie, he looks like a holocaust survivor! He is literally skin and bones. They are going to try some things to boost his appetite; and if that doesn't work we will be resorting to a feeding tube. They just don't want to boost his appetite while he is receiving chemo, because he will be nauseous. So I guess they will try the appetite help at home, and we will see how things go. Pray he gets his appetite back and gains weight! Now he weighs less that 94 pounds. It is scary to see him like that. Thank you for your prayers.

David will have another CT scan tonight, in about 30 minutes actually, to see how the lung mets are doing. We need to see how they are reacting to chemo so we can have a better idea as to when he has to go in for the surgery to remove them. So hopefully the chemo is shrinking them a LOT!

Well, I will keep you posted as to if we get a private room back or not. I really hope we do, David gets so depressed when he has to share a room. Thank you for your prayers. God bless you all. We love you.

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SUNDAY, MARCH 09, 2008 08:44 PM, PDT

David is still not feeling well today. He definitely does NOT want to go to Oakland tomorrow; poor kid. We can NOT wait until this is over! I am so tired of seeing my baby sick and tired. Which makes him very whiney, which can be frustrating. We can't just let him get away with everything, but we don't want to be 'short' with him all the time, either. It is a balancing act at times.

He used his CPM machine today. It was great to see his knee bending and straightening. It hasn't done that for 6 months! It was bent for 5 months, and straight for the past month! So to see it moving; wow! It is really incredible! It is totally indescribable!

We got a HUGE blessing from our church family today. It was a bunch of food! And some money, too. Things that are greatly needed! Thank you, church family! We don't have any family nearby, so our church family means the world to us. They have really stepped up to the plate in exhibiting Christian love. We love them lots (we loved them before, too). But like I wrote before, you find out who your friends are! And we have found out! Some people 'talk', some people 'do'. I want to be able to do the same for someone else in a similar situation.

Well, I am tired. Yeah, I really hated losing my hour last night!! I will close for now. Please pray us to Oakland tomorrow, and please pray that we get a private room! David needs one VERY badly!! Thank you. Have a good night, and I will post tomorrow how the trip goes. God bless each and every one of you. We love you.

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FRIDAY, MARCH 07, 2008 08:36 PM, PST

Well, we got home around 3:30. Of course, David threw up on the way home. Poor guy. He was so excited to go home, and feeling sick at the same time. I feel so bad for him. Being sick and throwing up really puts a damper on him going home. But we are home now. Of course, he is too sick to eat, so how are we going to put weight on him? We are doing our best, but I am afraid that our best isn't going to be good enough. Please pray that his appetite picks up and he feels like eating. Thanks.

It was really good to get home while it is still light! That was so nice. We are only going to be home for the weekend, and this weekend we lose our hour! I, for one, hate daylight savings time. I hate losing my hour. I don't sleep that well anyway, and I need all of it I can get! Oh well. At least we are home; we are insanely happy about that! I think the girls were glad to see us. We hate leaving them alone all week. We are really glad Jeremy is close by, he is a great big brother. He does a good job of watching out for them.

Well, that is about all that is happening. Thought I would let you know that we are home; and ask you to continue to pray for David. We hate seeing him so sick.

Oh, we got the CPM machine. It was delivered to our house around 4:30. We will be bringing it to the hospital on Monday. David was really scared that it was going to hurt to have the machine bend his leg; so he was pleasantly surprised that it didn't hurt at all. It doesn't bend that much to start out with. He said it just feels weird; his knee feels weird. It is not the knee God gave him, so it is a strange feeling. I have heard that from other people on our osteosarcoma support group website. I guess he will get used to it in time. I can't even imagine how that must feel. But we will gradually increase the degree of bend that the machine does. We are so excited to see him one more step closer to walking!

Anyway, I need to go. I am really tired. You all have a good evening, and thanks for all the posts to David. God bless you all. We love you.

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FRIDAY, MARCH 07, 2008 08:23 AM, PST

We get to go home!! Yay! His 'meth' level is .06! So we are outta here! Thanks for your prayers!! Now just pray that we get 5south when we come back on Monday, please! Gotta go pack up; even tho it takes a while to be discharged. Talk to you when we get home. God bless you.

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FRIDAY, MARCH 07, 2008 06:54 AM, PST

I know I just wrote a few short hours ago, but I need to 'vent'. They drew David's blood, but we won't know for a few hours what the levels are. So we wait. Meanwhile, I have to tell you it was a HORRIBLE night last night. I guess David's roommate's mom just lets her child (somewhere between 7 &10 years old) fall asleep to the TV whenever he wants to. She had the TV on ALL night long. Ok, she turned the volume down a little, but her TV is only about 4 feet from David with a curtain separating the two! I could still hear it, and I am about 10 feet from David! So, on the chance we don't go home today, I am going to 'demand' that we are moved. One of the guys who set up David's new bed and put the sheets on it and all that works on 5south. His name is Garron, and he said he wishes we were over there, and that there is an empty room and someone going home today! I am so angry, and tired, that I can't see straight! I have been awake almost all night so all I want to do is cry! I have even been kicking around ideas to help my son with this horrible situation. Keep in mind, this whole thing stresses him out big time. I can't really explain it, it would take a book, but he doesn't handle this very well. You would be surprised; some kids do. Some kids are scared, lonely, and all that, but take it all in stride. Not David. He already has one ulcer, how many more is he going to get? I am so tempted to look into (I am going to eat my words here) having his treatments done at.....gulp......UCSF!! It is the same chemo; same protocol, and the surgeon is over there!! The nurse we had yesterday, Brooke, is going over there in April. We loved the nurses there; just not the overall hospital! I don't know what to do. Oh, 99% of the rooms there are private rooms; only 2 rooms aren't (we got one of those when we were there, but it was fine). So the chance of David having a private room is excellent! He did a lot of talking to the psychologist (Christy) yesterday, and she said that his mental health is paramount to his physical health. Yeah, tell them here that! So we are just going to have to figure things out. Some people get the private rooms here without asking, some people (us) ask for them and still don't get them. But remember, we don't have a little girl; we have a teenage boy! I am not saying for sure they play favorites, but it sure seems that way! (remember, this is my journal of what I am feeling during this time in our life, you get to share along). Please forgive my rantings, I am just sooooo tired, and discouraged, and depressed, and scared, and lonely, etc.

They are also very concerned with David's nutritional needs and his 'skinnyness'. His bed sore will take quite a while to heal, but longer if he can't get any meat on his bones. The doctor told us yesterday that he needs to 'beef up' so he can heal; so he can handle chemo better physically; and so he can fight the cancer better. He still only weighs 94 pounds! He is holding his own, but that is about it. They want him to be at LEAST 100 pounds my next time we come in.....yeah, I see that happening! He hasn't gained 6 pounds in a month, how is he going to do it in a weekend?!?! We would love to see him be 100 pounds, too! We would love to see him be 150 pounds!! Oh well, just something else we have to contend with!

Well, I will let you know what is going on as soon as I know. If we go home, I will pack my laptop last so I can update you. Have a good day, and I hope to be writing again REAL soon! God bless you all. We love you.

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THURSDAY, MARCH 06, 2008 10:30 PM, PST

Sorry I haven't updated yet today. We are still praying that we get to go home tomorrow. This time last week David's 'meth' level was .15; today it was .22. He was pretty nauseous yesterday so they gave him kind of a lot of ativan, and that makes him really tired, so he slept a lot and didn't drink as much as we would have liked him to. But it is still possible that he will clear tomorrow, we are praying so.

He finally got the bed they ordered him on Monday. It is a special bed that alleviates pressure on his bed sore. He said it is really comfortable. But if we are going home tomorrow.......oh well. They said they will store it for him for next week when we come back. He is going to be needing it for a long time; the wound care specialist said he has a pretty deep sore. So; he will be needing this bed for quite some time. They are going to send us home with a special foam 'mattress' to put on top of his bed at home. Poor guy, just can't seem to catch a break!

The CPM machine never did make it here. Everything is set up for us to have one delivered to our house when we get home. I don't know if we have to bring it with us to the hospital, or if they will have one here, or what. I guess we will find out all the details tomorrow, or before we leave.

I am staying with David tonight. I sure hope we get some sleep. David's roommates are VERY loud and rude. We HATE not having a private room. The people of Oakland suck! They voted 'no' on a proposition to rebuild this hospital. It would have raised their property taxes only $2 a month! Ok, don't go to Starbucks for just one day a month. This hospital is old and needs to be rebuilt. Or at least remodeled so all the rooms are private rooms. Right now David is trying to sleep, and his roommate's light is on, as well as the TV. And they have no clue about volume control; their TV is always LOUD!!! Please pray that we can get some sleep tonight. Thanks.

Well, I need to try to sleep, too. Or at least lay down; maybe they will get the hint! You all have a good night, and please pray we can go home tomorrow. I will let you know what happens. Thank you. God bless you. We love you all.

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WEDNESDAY, MARCH 05, 2008 07:45 PM, PST

Well, we are still here in the same room. But...... the little boy who was here too went home, so we were able to move over to the window. It isn't the same as the private room, but at least it is a window. David is sitting here with me in the window seat/bed as I write this. We were told yesterday that we would move over to 5south as soon as there was an opening. Well, we found out that first choice goes to little girls. We requested on Monday morning at 9:00 for 5south (private rooms); but a little girl next door to us; who got here many hours after we did got to go over there first. And so here we still are. But I do want you to know I am thankful for the window. David does have another roommate, cute little boy. But his mom has a pretty bad cough! Just what we need. Please pray we can go home on Friday!!

David's 'meth' level is right where it should be. Remember, at the 24-hour mark they want him to be <5; and his 24-hour mark is 4.78. Last week the 24-hour mark was 4.79. Pray we can leave early; it would be nice to get home before dark! It seems we always leave so late that we rush home. We would love to get home early (still light out) and be able to relax for a little bit before we have to go to bed! Please pray that we get out of here early! We have to come back on Monday anyway, but it would still be a few extra hours at home!

I would really covet your prayers. I feel like I am coming to the end of my rope. I would like to print some scripture for you; from 'The Message' translation; so you can see where I am at. It is from Psalm 13. Here goes, "Long enough, God--you've ignored me long enough. I've looked at the back of your head long enough. Long enough I've carried this ton of trouble, lived with a stomach full of pain. Long enough my arrogant enemies have looked down their noses at me. Take a good look at me, God, my God; I want to look life in the eye, so no enemy can get the best of me or laugh when I fall on my face." That is where I am at emotionally right now. I feel like I am headed for a nervous breakdown! I know all the 'Sunday School' answers for what we are going through, but knowing it in my head and dealing with it day by day are two different things. I am wearing my heart on the outside right now, and it hurts so bad!! I am scared for my son's life. I know God is in control, I just don't know what that means for us; especially for David. Please pray for us as a family. I am trying to trust God; but it is really difficult right now. This chemo and surgeries and cancer are taking such a toll on my baby's body. He was always a thin child, but we can't seem to get his weight back up. I feel like if a strong wind blows he will blow over! He needs some meat on his bones to fight this. Again, just pray, please. Thanks.

We had the wound specialist in today to look at David's pressure sore (bedsore) on his tailbone. It is pretty bad. She said it is going to take a long time to heal, chemo retards the healing. Plus, he is so doggone skinny! She said it is going to look worse before it looks better. And now we also have another type of dressing on his broviac site; hopefully that will help. Poor child just can't have anything easy. Pray for his healing; of everything!!

Well, I gotta go. You all have a good night, and thank you in advance for your prayers. I will let you know what is 'meth' level is tomorrow. Bryon is staying with David tonight, I got to last night, and I need to get to the Family House. God bless you all. We love you.

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TUESDAY, MARCH 04, 2008 09:51 AM, PST

Another day in paradise~~~yeah, right! Bryon stayed with David last night and said he (David) had a good night. He wakes up a lot to pee, but otherwise he was sleeping. We have them guessing, still! David has those blisters around his broviac site again. They are extremely itchy, and they look like they are painful. They are little blisters. And they are only around his broviac site, so they know he is allergic to something. Every dressing we have put there has broken him out. Now he has a strange thing that ends up wrapping around his chest. It is the dressing they use for the bone marrow transplant kids because their skin can't tolerate anything else. Well, neither can David's. He has very sensitive skin, obviously! This is the same rash (blisters) that put him in isolation for 3 days! They know it is not shingles, we knew that then, but they are trying to figure out what to do with him. They gave him an anti-itch medicine, but he can't take it because he has an ulcer. But their next step is the hydrocortisone cream. We will see how that works! With David, there is always something new!

Well, we are still in this tiny area in this room. We have made our requests known, we will see what happens. Please pray that we get into a private room, or at least a window bed. David gets really depressed when he can't see outside. It makes the stay here soooo much harder for him. Like I said before, it is hard because he never has any visitors (we live too far away) and not being able to see outside just flat out sucks!! Another 9+ weeks of this is not going to be fun if we end up with this situation! Please pray that he gets either a private room or a window bed for the rest of the times we have to be here. Please pray that David can be cancer free (NED) in July when his treatments are over, and stay that way FOREVER!!

I need to go for now. Check back later and I will try to post more information about his broviac site blisters; as more info comes in! He is doing school right now, he needs to get 'caught up'. Thank you for your prayers. We need all the prayers we can get; sometimes it seems God doesn't hear us~~~maybe He is just tired of hearing our voices; he needs to hear someone else's! Anyway, you all have a good day. We love you. Thank you for your love and prayers.

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MONDAY, MARCH 03, 2008 06:56 PM, CST

Well, we made it here just fine. It was really strange, there was no snow, no rain, the roads were dry and the sun was shining! It felt like we must be dreaming! It hasn't been like that since this nightmare started back in October! But it was nice. Spring has sprung in California! The trees are all blooming and blossoming; and they are beautiful! So we made it to our 'home away from home' safely.

We did NOT get a private room. I am a little frustrated about the whole experience, though. We got here at 12:40 and they didn't start hydrating him until 6:15!! I feel like since I called at 9:00 this morning, and they knew it would take awhile for us to get there (here), they could have had the hydration fluid ready and waiting! It is soooooo irritating! They knew yesterday that we were coming in today. Grrrrr! We want to get the hydration started so they can get the chemo started, so we can flush it out, so we can go home!! Oh well. We know Teagan is leaving tomorrow, so we have requested to be moved to a private room. Please pray that we get one! Thanx.

Ok, since we are on the subject of prayer~~~~please pray for our finances. This is costing us money we don't have, and I have lost the little bit of income I had. I asked you to pray for Neil and Tracy, and they found someone to watch Parker. I don't blame them one little bit, but we still kinda counted on having the money when we were home between treatments. We have to pay $105 every time David is admitted into the hospital; and in the next 13 weeks he will be admitted at least 9 times. That doesn't count the time he will be admitted for his lung surgery. So we don't know where that money is going to come from. It is in God's hands, but we still don't know where we are going to come up with an extra $945!! Plus all the gas and food to come here. So, please just pray for our finances. Thank you.

Rachel did the blood draw yesterday and it went GREAT. She did just fine. Then Bryon and I took it to Carson-Tahoe. No problems. David was still feeling nauseous yesterday, so Bryon and Rachel went to church, Jennifer and I stayed home with David. Actually, David is still feeling nauseous today, too. Poor guy. After next week we will actually have 2 weeks at home! And the way it looks now, we will NOT be in the hospital for Easter! Yay! We were in the hospital for Thanksgiving Day, Christmas Eve and Christmas Day, Valentine's Day; but we will be home on Easter! Maybe our 'luck' is changing? I don't believe in luck, but still.

Well, I need to go. You all have a good night tonight, and please pray for the above requests! Thank you. God bless you. We love you.

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SATURDAY, MARCH 01, 2008 09:58 PM, PST

David had a quiet day today. He is still feeling a little bit nauseous, so he just stayed home today. I did the never ending laundry and picked up the house somewhat. I had to go to the store to get some special laundry soap and fabric softener for him; the 'no perfume, no dye' stuff. His skin is so doggone sensitive. He has a rash on his stomach and he is itching under his broviac dressing again. So I have to do what I can do to alleviate the itching, so I bought the special laundry soap. Hopefully, that will help.

He got a shower tonight, the first one in awhile. He was not allowed to get his leg wet, so we were just sponge bathing him. But now that his staples are out of his leg, he can shower. It is a little difficult for him, but he managed. He has the bench seat for him to sit on, but his leg still scares him. Once he can bend it and put weight on it, life will be much easier. In time.

Well, Rachel said she wants to do the blood draw tomorrow, and then Bryon and I have to take it to Carson-Tahoe Hospital. Then there is church, then lunch, then shopping! Tomorrow is going to be a busy day. Our weather has been really nice lately, for a change. Today the high was 48 degrees, so it was nice. Tomorrow it is supposed to be about the same, so we are going to bar-b-que burgers! We haven't done that in a long time. There is still snow in my backyard, and a lot of ice, but it will still be good b-b-qin' weather.

Well, I need to go. You all have a good night. God bless you. We love each and every one of you. Thank you for your prayers, and your love. We need and appreciate it. Talk to you later.

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FRIDAY, FEBRUARY 29, 2008 09:53 PM, PST

I forgot to tell you that David threw up on the way home. I gave him some zofran and that seemed to help. He doesn't like taking the ativan because it makes him really sleepy. He did sleep some on the way home, too, so that helped. I am glad I got some more zofran, he has been feeling a little nauseous lately. Usually he feels crummy the first day or so home. Then he starts to feel better just before we have to go back again! Poor guy. So he will be feeling better on Sunday, just in time for us to leave again on Monday. Oh well, that is the way it goes. Thank you for your continued prayers for him. God bless you all. We love you.

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FRIDAY, FEBRUARY 29, 2008 07:54 PM, PST

We are home and David is VERY happy to be home. The staple removal went very well. Some were a little imbedded in his leg, but he did ok. He said some of them hurt, but he was able to lay very still. Dr. O is very pleased with the way his leg looks, as are we! He said the hip rotation will get better when David is able to walk. David 'rolled' his leg (to the left) while he was sitting on the table, and Dr. O said that David "made my day, watching him move his leg like that". So that was cool. He said we won't do any lengthening until chemo is over because chemo affects his ability to heal. He said he doesn't want to put David in surgery and not heal, and end up with an intussusception, etc. He is so funny! He is still surprised that David got the intussusception. He agrees that David is just a 'special' child! We go back in 4 weeks, and they will take an x-ray of his leg to see how the rod is doing. Then he will assess whether David can be weight-bearing at that time. Until then he is still totally non weight-bearing! Meaning he cannot put ANY weight on his right leg. We cannot wait until we see our baby walk again! When he goes back to the hospital on Monday he will be put on a CPM machine~~~Continuous Passive Motion. His leg will be on a machine that alternately bends and straightens his leg. David has to do no work to bend the knee, the machine does it. He is scared to have his knee bent; it has stiffened up; but he will be fine. He is on the road to walking, and he is excited about that.

Well, we are home for only a couple of days. We have to go back on Monday for the Methotrexate chemo. Then we come home on Friday (hopefully) and go back the following Monday for the Doxorubicin/Cisplatin chemo. David has 10 more treatments in the next 14 weeks. Yes, we will only be home 4 weeks out of the next 3 1/2 months! But the lung surgery will be thrown in there sometime, too. So for the next 4-5 months we are still in semi limbo. But the end is in sight. We just pray that David will be NED (No Evidence of Disease) at the end of his treatments. And we hope he stays that way FOREVER! God can do a miracle, and we are praying for a BIG one! Please join us in that prayer! Thanks.

Well, I have things I need to do to get ready to leave again on Monday. I will post tomorrow if anything happens. I have to do the blood draw on Sunday, again, and take it to Carson-Tahoe Hospital. You all take care and have a good evening. God bless you all. We love you.

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WEDNESDAY, FEBRUARY 27, 2008 08:38 PM, PST

Ok, David is always throwing us curve balls! Now he is running a fever. We don't know exactly what that means, but when we are home and he runs a fever over 100 twice within an hour we are to take him to the hospital. They took his temp around 7:30 and it was 100.1; then they took it again around 8:15 and it was 100.2. We are really not sure where we go from here. Please pray that we will still be able to go home. David is crying because he is afraid that we won't be able to go home; which is a real possibility. Nothing ever goes smoothly for poor David. All I can say is pray, pray, pray! See, I guess I should have packed for 2 weeks! I really thought this chemo would go off without a hitch. Now why would I think that?!?! Grrrr!! Well, that is all for now. I will try to post as soon as I know what is going on. Thank you for reading. God bless you.

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WEDNESDAY, FEBRUARY 27, 2008 05:34 PM, PST

Well, it looks like we are coming home on Friday. They really don't want to transport us again, so what we will do is just be discharged tomorrow, go to San Francisco for his appointment, and then come back and go to the outpatient clinic for more hydration and leucovorin. That is the way it stands now. That way David will stay the one night with us in the Family House. He is looking forward to that; being in Oakland and NOT being in the hospital. We tried that last month, remember? He ended up in isolation for 3 days! Not this time!

Wendy and Teagan went home today; I hope they had a safe trip. I hope Wendy is feeling better. They are coming back on Saturday, and we are coming back on Monday, so we will see them again.

Please pray for the parents of the little boy I babysit. When I go with Bryon to Oakland, they have to find someone else to watch Parker. I am really sorry that I put them in that situation, but it just can't be helped. My other kids don't have the time to take off of work to go to Oakland; and besides, David is MY child, and therefore my responsibility. But I feel really bad about the hardship it causes Neil and Tracy. Could you please pray for them? Pray for them to find the right person when I am gone, and that they can understand my need to go. Things have worked out so far, and I just pray that they continue to do so. This will come to an end at some point, this is only temporary. The scans and tests David will have for the rest of his life will only be a day here and a day there; not weeks on end like it is now. I know that if it was their child they would do all they had to do to be there all the time, too; as any of you would. Thank you for remembering Parker and his family in your prayers.

I am glad that we have a 'tentative' timetable with David's chemo. I know that it could all change, but it is nice to know what we are up against, and to know we are on the 'home stretch' now. Please don't stop praying for David, he still needs LOTS of it! Like I said before, he is NEVER out of the woods; not for the rest of his life. He will need prayer for the rest of his life! Thank you for your prayers.

Hey, we don't have to come back to Oakland until Monday, so we get to go to church on Sunday! Yay! That will feel good.

Please pray for David tomorrow. He is pretty nervous about getting the staples out of his leg. Pray that it won't be painful for him. Pray that we can get in to see Dr. O'Donnell on time, and we can get out of there. Thanks.

You all have a good evening. I will post tomorrow and let you know how the staple removal went. God bless you all. We love you.

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TUESDAY, FEBRUARY 26, 2008 05:24 PM, PST

Well, we got the results of David's blood work. They like his level of 'meth' in his blood to be less than 5% after 24 hours; his was 4.79%. Remember, he has to be less that .1% for them to let us go. They are setting up transportation for us just in case. But this time we might not both be able to go in the ambulance with him because a nurse will have to go, too, if David is still hooked up to the IV. We will see. Please pray that David clears in time for us to be released so we can just go to S.F. by ourselves.

Could you please pray for Teagan and her family? She is the sweet little 7-year-old who has/had osteosarcoma in her hip. She has only 3 treatments left; and then she enters the scan mode~~~and scanxiety~~scared that the scans will show that the cancer has returned. She had 100% necrosis in her tumor, but still will have the scans for the rest of her life, too. She lives not too far from us. Anyway, I would appreciate your prayers for her, too.

David has had a pretty quiet day today. He has spent the day doing what he hates the most~~~sleeping! The poor kid has not had any good sleep for weeks, so we are just letting him sleep. He won't be happy when he wakes up and find he has slept the day away, but that can't be helped. He gets upset and angry when he sleeps all day; but he gets irritable, crabby, and 'fussy' when he doesn't; so we prefer to let him sleep. The drugs they are giving him for his nausea are just really kicking his butt this time. But that is just fine with us.

I read something today that I would like to share with you~~~it is SOOOO true. Ready? Ok, here it is; "Whoever said winning isn't everything.........never had to fight cancer". Let me tell you, never was a truer statement made. We are in for a BIG fight, and we plan on winning, and winning BIG! Please pray that for us! We need a BIG miracle!

Well, David just woke up and wants dinner. You all have a good evening, and I will post tomorrow with his blood count. Pray that we are close to the .1. Thank you. God bless you all. We love you.

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MONDAY, FEBRUARY 25, 2008 07:47 PM, PST

I also forgot to tell you that we got a private room this time, YAY!!! It is a HUGE room, with a tiny bathroom. We aren't going to complain, though! We weren't sure if we would get a private room, so we are very happy that we did. Sorry I neglected to tell you that before.

They started chemo around 1:30am. Later than they planned, they had to wait until his urine reached a certain level. They just kept hydrating him until they could start the chemo. It was done at 5:40am (give or take a few minutes) and tomorrow morning at 1:30am they will start the leucavorin (rescue drug) and then we wait until David 'clears' it out of his system. They give the leucavorin every 6 hours until he clears. He has to have <.1 in his blood before they will let us go. I stayed with him last night, so Bryon will stay with him tonight. I really miss him when I go to the Family House. Pray that the boys can get a good night's sleep tonight~~better than the one I had last night!

Well, gotta go. You all take care and have a good evening. God bless you all.

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MONDAY, FEBRUARY 25, 2008 07:33 PM, PST

We can see the Golden Gate Bridge from the room we are in now, so I thought I would use this background for now. Plus, David's surgery was in San Francisco, and we have to go to San Francisco on Thursday, so there you go. Hope you enjoy this scene for now. Have a good evening. We love you all.

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MONDAY, FEBRUARY 25, 2008 05:19 PM, PST

Good afternoon. Well, we just got the news about where we go from here. David is not eligible for the clinical trial because he had that one more treatment before surgery. It was the same treatment he would have had right after surgery, but he had it before surgery so it kicked him off the study. That was what Dr. O wanted so the tumor would shrink more and save David's leg, so that is ok. It is what it is. So where we go from here is we just stay with the standard protocol. That means we just keep giving him the same drugs as he is getting now. I have mixed feeling about that. They didn't seem to work that great (only 75% necrosis rate) before, and now I have to trust that they will work now that the primary tumor is gone. I don't know, I hope I am making sense. Basically, THIS SUCKS!! And now we have to talk about when to do the lung surgery. I ask again; how much is one child supposed to have to take!?!? Please pray for us! It is so easy to say that his life is in God's hands, but when I look at the very real possibility of losing him, I want his life in MY hands! I wouldn't let him die. I hate the thought that we could be putting him through all this pain, surgeries, chemo, etc. for nothing!!! I just don't get it. I know God is sovereign and all that, but that doesn't help! My human emotions and maternal instincts get in the way of that. Trust is VERY hard for me, and if this is a test, I don't want to fail! Please pray! Thank you. I was so sure that we would get a higher necrosis rate; and now I am not sure what God has "up His sleeve". Please don't think I am being disrespectful, I am just 'baring my soul' to you all. I love God and I am trying to trust Him. Please, please pray for us!

David is not feeling very well with this chemo. He hasn't really eaten today, just been downing the gatorade. I forgot to tell you that we did hit Subway on the way here. He isn't quite up to a footlong yet, but he did manage to eat a 6"! He ate the other 6" for dinner last night. He still loves Subway; and we can't wait until he can get back to eating the footlongs!!

Well, I need to go. You all have a good night, and keep reading. I will let you know how things go as they happen. Unfortunately for us our kids 'burned' all their vacation time when David had his 2 back-to-back surgeries. That just means that I will have to go with Bryon most of the time, now. Oh well, that really can't be helped. But, if all things go according to schedule (yeah, anyway), David will be done with chemo the first week of June. That works out good for the little guy I babysit~~his mom is due first week of June. She is having a girl, by the way. So I guess this part of the nightmare is almost over. We have NO idea what happens next, but we will keep you posted.

Have a good night. God bless all of you. Thank you for your love and prayers.

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SUNDAY, FEBRUARY 24, 2008 08:25 PM, PST

Well, we finally made it here; our 'home away from home'. We left around 9:15 and we got here around 3:45. Yeah, it took us quite a while. There was sooooo much snow. We had about 9" at our house. The roads were worse than they were 3 weeks ago. And it was snowing really hard, too. Then, when we finally got out of the mountains and the snow, it rained; hard! There was a bit of patchy blue sky, but mostly rain. So we finally made it.

They started hydrating David at 6:15, and they said he will start chemo around 1:00am. We got our favorite nurse, Chuck! This was a good day. David cried before we left, he didn't want to go. He knows we have to, but he still doesn't want to go. Part of the problem is he doesn't like leaving his sisters. But he is a trooper, and he 'bucks up' and we go. I feel so bad for him It breaks my heart to have to do that to him, but we want him to live, so we will do what we have to do. It is just really hard.

It was great to see Wendy and Teagan. Teagan is only on one crutch now, and she is doing so good. I am so proud of her. She really is an inspiration to me. And she only has 3 more chemo treatments left. She is such a sweet little girl.

Well, we made the decision about David's treatment. We signed the papers to keep him on study. We don't know exactly what that means at this point; we will find out tomorrow. They will let us know what path he is taking, and what drugs that entails. We know that God is in control, and we asked Him to put David on just the right one for him. We are praying for David's life.

Well, I will post tomorrow when we find out what David's treatment will be. You all have a good evening. Please pray for David and us as we wait for the answer. Thanks. God bless you all. We love you.

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SATURDAY, FEBRUARY 23, 2008 08:48 PM, PST

Sorry I didn't post until now; we have been busy. It is snowing rather hard right now. We have 6" and it is still snowing. It is going to be another long trip tomorrow. Oh well. We wouldn't know what to do if we had a clear drive over the mountains. It is so 'normal' for the weather to be bad when we go to Oakland.

We had a special treat last night. David's Sunday School teacher from way back (we are talking like first grade) came over with his wife and they brought us dinner. We had a wonderful dinner of a yummy homemade soup, bread, and a fantastic salad. It was a perfect dinner for the cold day we had yesterday. Thanks Bob and Laura! They also invited us to go to church with them, so we went tonight. We won't be able to go tomorrow, so we still got to worship this weekend. David wasn't feeling well, but we think it was just satan attacking because we were in church; the last place satan wants us to be! As soon as church was over David felt better. Some ladies came over and prayed over and for David, and it was very special. He needs all the prayer he can get. We are still expecting God to work a miracle in David's life. Please keep praying for that.

We are trying to get all packed up for tomorrow. We pack food to take with us, it saves us money. We need to save everywhere we can, we are running out of that commodity called cash. Oh well, another area where God needs to work a miracle! Pray for that, too, please.

Well, I gotta go. I am still trying to finish up the laundry and packing. You all have a good evening. Please pray us over the mountains. I will post tomorrow and let you know how the trip went. Thank you for your love and prayers. God bless you. We love you.

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THURSDAY, FEBRUARY 21, 2008 08:35 PM, PST

Good evening, everyone. I got another call from Connie today. We are still on track for coming in on Sunday for his next chemo. But (you saw that coming, didn't you?) we have to have a talk with the oncologists there on Monday. We have to decide David's next course of treatment. He is classified as a 'poor responder' to chemo, so we have to make some decisions on where to go from here. Do we stay on study, do we just go with 'conventional' treatment, what. We would covet your prayers for the next several days as we try to decide what to do. If we stay on study, he will be 'randomized' in his treatment. It will be one of two specific courses of treatment. One of the courses is adding 2 specific drugs. We have heard that those two drugs can cause David to become sterile. But it could be the best bet for a long term survival. So we just aren't sure what to do. We don't really have a choice on what course we are put on if he is 'randomized', but still. I can't even tell you how hard this is. We just want to make the right decision for our son, and for his life. Please, please pray that God directs us to the right answer! We need His guidance in this. We know He knows the right answer, and we would like Him to reveal it to us. Please pray for us. Such a difficult thing, to make a decision for our son that could impact the rest of his life; or a decision that could cost him his life. Arrrggghhh! Again, please pray for us. Thank you.

David got a special treat tonight! A friend came by and gave him a BIG box of white cheddar cheez-its, and a personal size pumpkin pie~~two of his favorite things in the whole world! Thank you, Lisa!! That was great! And thank you for the fellowship, also. Of course, and for your friendship. We love you!

Well, you all have a great rest of your evening. And you all have a good day tomorrow. Connie will be calling me again about David's blood counts. I will post more tomorrow. Thanks for visiting this site. Thank you for your love. God bless you. We love you all.

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WEDNESDAY, FEBRUARY 20, 2008 09:18 PM, PST

Well, I talked to Connie (David's nurse) today. She said that David's blood counts are great! Well, they should be. He bled out all the chemo blood; and they gave him 5 pints of fresh healthy blood. I should say his counts are good. So we are on track for chemo.

We will go on Sunday for them to start hydrating him. We need chemo to start as soon as possible. He needs to have the Methotrexate flushed out of his system by Thursday. He has an appointment at UCSF on Thursday at 11:45 to have his staples removed. If the 'meth' isn't flushed out of his system, we might have to be transported to UCSF by ambulance, again!! I really hope that we can get that 'meth' flushed out. Please pray that we can.

David is also supposed to go to the other UCSF hospital to have his belly incision looked at, but Connie said that could be done at Children's. If there seems to be a problem, the surgeons there can take care of it. We don't see any way we can fit an extra trip to UCSF in to our schedule while we are there. Grrr. This is so complicated. Oh well, it will work out somehow.

Connie said we have a 'special' boy. Well, we already knew that! But she is saying with everything that is happening to him; like going to Children's for one day and spending 3 days in isolation, surgery being delayed, the times he has had to spend extra days in the hospital, an emergency abdominal surgery (for a condition that 13-year-olds do NOT get), an extra week at UCSF, etc. he is just a special kid. One of the doctors at UCSF said that nothing is 'normal' when it comes to David. He doesn't follow any of the 'rules' or the norm, he is special. That can really be frustrating! But we love him so much, we know he is a special kid. He is worth all the trials we are going through with him. It just breaks our hearts to see such a great kid go through what he has to go through.

Well, I need to go. You all have a good night. Tomorrow is blood draw day again. Hopefully it will go well. I will keep you posted on how things are going. God bless you all. Thanks for visiting this site.

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David had another quiet day today. He did some school work. His tailbone is still pretty sore. His belly looks better, but that blister still looks gross. It has turned red now that it has popped. Part of it looks kinda black. I can't wait until that heals.

We had some excitement in our house today. Our cat had 3 kittens this morning. She makes really pretty babies! One of them is already spoken for! She had 4 kittens last May, and we had no problem giving them away. And these are way cute. 1 boy and 2 girls. We were hoping she would wait until we got home from San Francisco before she had them, and she did!

We got a huge blessing when we returned home. The vet hospital where we boarded our dogs didn't charge us for boarding them! That was such a blessing, partly because we were gone an extra week, and partly because funds are getting VERY low in our bank account! God is going to have to work a miracle there, too! But we are thankful to them for not charging us!

Well, that is all that happened today. You all have a good evening, and I hope to have news tomorrow on whether or not we go to Oakland on Monday. God bless you.

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MONDAY, FEBRUARY 18, 2008 08:50 PM, CST

David had a pretty quiet day today. He still isn't feeling that well, so we kept it low key today. He is still really sore, so getting around is pretty difficult for him. But he is a trooper.

He ate pretty good today. For breakfast he had 2 scrambled eggs with cheese and 2 pieces of whole wheat toast. And chocolate milk. For lunch he had 5 chicken breast nuggets. For dinner he had some spaghetti made with whole wheat noodles, mixed veggies, and a little bit of salad. And chocolate milk. So he did pretty good. His appetite is not where we want it to be, but it is getting there. We need to get the weight back on him.

Well, that is about it. He will start doing his school work again tomorrow. He got a bit of a break with surgeries and all, but he still needs to do school. Please keep him in your prayers as he is healing from the trauma his body went through. Did you check out the new pictures? Please do that. Oh, Bob, we don't have your phone number to give you a call.

You all take care and keep checking back for more updates; you never know what will happen in the Koury Cancer Ward. God bless you.

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SUNDAY, FEBRUARY 17, 2008 03:01 PM, CST

We went home! Sorry I didn't tell you sooner; but we had already packed up the computers by the time we found out. We didn't get to leave until a little after 6:00pm. We didn't get home until 11:00; San Fancisco traffic! Hate big city traffic. We kinda thought on a Saturday it wouldn't be so bad. Yeah, right. But we are home. David is very glad to be home. His tailbone is very sore, but he is home! We hope we never have to go back to that hospital again.

It was great to go to church today. We haven't been in a few weeks. David counts were too low to go a few weeks ago, and we were in S.F. for 2 weeks. So it is was great to go today.

David isn't feeling that great right now. His leg only bothers him when it is bumped or something like that. His stomach is another story! He has gotten a stomach ache for the last couple of days, and I think I have figured it out. They haven't been giving him his protonics, and I think that is the problem. This morning I gave him his prilosec, and now his stomach is better. He does have that ulcer, so I have to be really diligent about his prilosec. The blister he has on the end of the incision under the steri strip is ugly. It is black and doesn't look good. I am going to keep putting antibiotic ointment on it and see what happens. His stomach is pretty sore. He has to 'walk' with his crutches, and it really hurts his stomach. But it is getting easier for him. He still isn't ready to tackle the stairs, so he is sleeping downstairs for now. Maybe by next week.

So far we are on track for chemo. We aren't sure what treatment course we will be on. We got some bad news with the pathology report. The necrosis rate was only 75%. That is considered a poor response to chemo. Anything under 90% is considered poor. So we are scared about what that means. We are expecting a bigger miracle from God now. It would be an easier miracle if he had a higher necrosis rate. So God has a lot of work to do! I will keep you posted on what happens now. We are supposed to go on Feb. 25 for chemo, and the pediatric surgeons said we were good to go. So we will finalize all that later this week.

Well, I will get this posted so you can read it! I will post and let you know how David is tomorrow. Thank you for your prayers; you are just going to have to pray harder now! God bless you.

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FRIDAY, FEBRUARY 15, 2008 08:23 PM, CST

Oh, I forgot to tell you something. David now has to wear some pretty funky boots. He has to wear one on his left foot to keep his achilles (sp?) tendon stretched. He has to wear one on his right foot because he has problems with that whole leg! Because his leg was bent for so long, and in the brace for so long, his hip is rotated outward. We will deal with the hip later. His foot is also rotated out; way out. So the boot is to bring his foot in alignment with his leg, and protect his achilles tendon. Also, the boot elevates his foot. The orthopedic surgeons want the foot elevated so gravity will bring the knee down and make the leg even straighter. We will take pictures of his boots and put them on this site. So that is what I forgot to tell you. Take care and have a good night.

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FRIDAY, FEBRUARY 15, 2008 06:36 PM, CST

David got his epidural out! YAY! Not until sometime after noon, but at least it happened. Then he got the catheter out!! Yay! He was VERY happy about that! Then, because he is eating, they took away his TPN (IV nutrition). So he is down to just one line of fluids going in; and that is so they can give him his antibiotic. He is off IV pain meds and is back on percoset by mouth as needed. He is finally moving really fast at getting out of here! The pediatric surgeon was just here and she said it looks really good for going home tomorrow. She said that unless something 'comes up', there is no reason we won't go home tomorrow! The orthopedic surgeon is going to remove his last drain tomorrow, and that is the only reason he is on the antibiotics. So we are soooo close! We want to go home soooo bad. There is a light at the end of the tunnel!

David got up and sat in a wheelchair for about an hour this afternoon. And he walked about 8 feet. It is frustrating for him; he was walking great before this major setback. I can't believe how much it set him back. I am so glad he is on the mend. Luckily he is young, he will heal fast.

Please pray that we get to go home tomorrow. David is so sore from laying in this bed. He has a bruise on his backend; he has virtually nothing between his spine/tailbone and the outside but a small layer of skin! He is so skinny. Down to 88 pounds doesn't give much room for fat on him! I would more that gladly give him some of mine. One of the bags of nutrition they were giving him IV was lipids (fats). Didn't seem to do much good yet. I will get him home and feed him good stuff. I can't wait!! I know his weight is going to go up and down, but I hope it never gets this low again!

Well, I need to go. You all have a good evening, and I will let you know if we get to go home tomorrow or not. Thank you for your prayers. God bless you. We love you.

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FRIDAY, FEBRUARY 15, 2008 11:17 AM, CST

David had a restless night last night. Rachel stayed with him. He can't seem to get comfortable because of the epidural in his back. He is supposed to have it removed this morning~~~hope they hurry! After he gets the epidural removed, he gets the catheter removed. He can't wait.

He gets to eat real food now! They just want him to take it slow. For breakfast he had a bit of scrambled eggs, some of a pancake, some orange juice, some milk, and some oatmeal. He said it feels good to be full. They are looking at maybe sending us home tomorrow. He is released as far as orthopedics is concerned, just the pediatric surgery team is taking care of him now. They are the ones that said maybe we can go home tomorrow. Please pray that we can!

Well, we are just waiting on the pain management team to come that the stupid epidural out of his back. Let me tell you, we have decided we know the difference between a Children's Hospital, and a hospital that has a children's 'wing'. We prefer the actual Children's Hospital!! This hospital sucks as far as focusing on the children go. I am glad that his primary care is given at a hospital that only treats children; the care is far superior! When David had his first surgery and was told he could have clear liquids, it took over 3 hours to get some jell-o!! The nurse ordered some STAT, and it still took over an hour! At Children's Hospital they get food within 45 minutes, any time of the day. We can't wait to get back to Oakland after this place!

Well, we found out that his chemo is on schedule. The surgery team said that they usually give 2 weeks after surgery for him to heal, and he had surgery on the 10th and chemo is scheduled for the 25th. So we will be home for a week and then we go back to Oakland. David was hoping for 2 weeks at home; but I guess it just isn't going to happen. Oh well, back to life on the road!

I gotta go. Please remember to pray for David, and us. Please pray we can go home tomorrow (2/16). Pray that David's pain will be easy to manage. Thank you for your prayers. God bless you all.

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THURSDAY, FEBRUARY 14, 2008 04:32 PM, CST

Well, David pooped! And there was NO blood in it. We are so excited about that! They have lowered his epidural, they are weaning him off it. He has had his broth and Apple Juice and Jell-o, and has kept it all down. Obviously his bowels are working. But he has no solid stool yet; what can we expect with no solid food for 11 days now!! We are so happy things are going so well. We were due for some good news, it is about doggone time! We still don't now when we are going home, but maybe this puts us closer.

Oscar went home today. We miss him, he was a great kid! But David already has a roommate~~16-year-old boy named Neil. We don't know anything about him. He came in with his head all bandaged, so we are pretty sure he had some kind of brain tumor. We are on the pediatric oncology floor, so this is a cancer floor. His dad and mom are with him, but they are all trying to rest.

Please pray that we can go home soon. We have been here way too long!! You know, it is funny. Two weeks ago when we went to Oakland and ended up in isolation; we were only supposed to be there for one night and ended up being there 3 days. This time we were only supposed to be here for 1 week and it ended up being 2 weeks. I guess I always need to double the amount we are told and pack for that amount of time. Fortunately the Family House has a washer and dryer! And here we can do laundry for FREE! It costs $1 to wash and $1 to dry at the Family House in Oakland. I am thankful it is free here. The extra week here has really hurt us financially. It cost double for food and water; plus we had to buy incidentals like shampoo and conditioner. So free laundry is a God-send!!

Well, that is all that is happening now. Keep coming back for more updates.

Oh, the pediatric surgeons were just in here because David has a blister under the steri strips on his belly. They said it will pop, and then we put some ointment on it. They said that if he keeps doing as well as he is now, we will be home this weekend! Please pray for that! Thank you. God bless you!!

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THURSDAY, FEBRUARY 14, 2008 08:32 AM, CST

First off, Happy Valentine's Day. Happy Birthday Carala and Gianna!

David had a good night. Bryon stayed with him. He woke his Daddy up 'tooting'; so that is good! I guess it was a big loud one! We have never been so happy to have a child do that! He had his dressing changed on his leg at 5:20 this morning~~got Bryon up early! His leg looks good. She said maybe Saturday he will get that last drain out. It is still draining a little bit, but not much.

David had the tube removed from his nose last night! YAY!! Now he is on clear liquids, and he can't wait to get past that and eat solid FOOD!! Poor guy. He did real well with the tube removal, even though he was scared it would hurt or make him gag. The nurse told him taking it out is nothing like putting it in. He said it felt weird, but didn't hurt. He is much happier without that tube in his nose and belly. That is one less tube coming out or going in to him. They will take the catheter out as soon as they take the epidural out. Maybe in a couple of day they will do that. The epidural is high on his back to numb his belly and not his legs. It does a pretty good job of numbing his belly; where the incision is. Oh, he had the IV in his arm removed last night, too. That one was put in for the contrast for the CT scan. So he was happy to have that one removed. Well, they did use that IV for the 2 units of blood they gave him Sunday night. But they hadn't accessed it since, so they just removed it. He has his broviac, but this hospital doesn't use his broviac for everything.

Well, that is all for now. I will post if anything else happens. You all have a good day, and keep coming back for more info!! Please keep praying for David. God bless you.

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WEDNESDAY, FEBRUARY 13, 2008 04:14 PM, CST

Well, we aren't sure about the tube now. They are going to come in and assess him and see how he is doing. He got up again earlier and said it is getting a LITTLE bit easier. Well, the getting up isn't easier, just being up is easier. Poor guy can't laugh, tho. He says it hurts too much to laugh. I hope his pain lessens really fast! He is trying.

I tell you, there are only a few people who know what this feels like. We were told that this would be a roller coaster ride; the cancer and all; but I already said I don't like roller coasters and I want off this one. Also, I didn't buy a ticket for this one! This is a pain that only those who are here can know. Wendy, you know what I mean, you are here on this roller coaster with Teagan. We are riding this nightmare together. I just want others to know that I understand this pain, and it does NOT compare to any other pain. To be told your child has cancer is a parent's worst nightmare. To know your child could die is a pain beyond measure. I know my sister understands the pain of losing a child. It is not natural to lose a child. There is a name for you when you lose your spouse; there is a name for you when you lose your parents; what do they call you if you lose a child? There is NO name for that!! Losing spouse and/or parents is more 'natural', kind of expected. Maybe I am not saying that right, but all parents out there should understand. I guess what I am trying to say is; thank you for understanding me/us in our pain and not comparing this to your situation. Please don't 'belittle' us by comparing us to you. Maybe you have lost a spouse; maybe you have lost a parent (I have); but it doesn't compare to having a child with cancer and living each day knowing they could die. And I don't think it took this for me to understand other people in pain. The thing it should make all of us do is cherish each day we have with loved ones, we never know when it will be their last. This cancer diagnosis was scary for us; and this past week was; too. To know that David was dying and nobody knew why was horrible. Even the doctors admitted that he was getting worse and worse everyday. We were watching him die, and it was horrific! Thank you, Jesus, that he is now on the mend. And thank you for your prayers and patience with me and all my posts. Like I said, this is my journal of our experience, and you get to share in my private thoughts. Thank you for being there for me.

Anyway, I will post when I know more. Thank you for your prayers and love. God bless you all. We love you.

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WEDNESDAY, FEBRUARY 13, 2008 01:59 PM, CST

David was up again this morning, for a little while. He will be getting up again soon. He had the suction removed from the tube in his nose, but still has the tube. They might take the tube out today around 2 or 3; that is the plan anyway. Then he can have dinner! Clear broth, but dinner! He is so hungry. But he is passing gas! That is such a good thing. Never were we so happy for that! They said when they took the suction off the tube his stomach would hurt if he still needed the suction. Well, his stomach doesn't hurt! Well, not on the inside anyway. His stomach (outside) is sore, but that is to be expected. He is feeling so much better, just from one day to the next. He still has a LONG way to go in his recovery, but he is making progress! His fever is gone. The doctor who was in surgery with Dr. O (Dr. Jennifer Laine) came in and said that they only need to chage his dressing every other day; and as far as orthopedics go, he isn't an inpatient. He would be home if it wasn't for his stomach. That is encouraging and frustrating at the same time. We are pleased he is doing so well with his leg, but this bowel thing was such a HUGE setback for him. I did get him smiling last night; boy do we miss his smiles!! But the poor guy has been so sick for over a week now, no wonder he quit smiling. But when we were alone (I stayed with him last night) I had him smiling......BIG smiles! I was happy about that.

Please continue to pray for him. We want to go home, and he can't go home until they are sure his body is working properly. Please pray that we won't have to have the tube reinserted down his throat. Please pray that the removal will go good, David is nervous about that. Thank you in advance for that.

Bob~~David wants to learn to fly fish. He can't wait for that. He thinks it sounds like fun. Thanks for wanting to teach him that!

Well, I will let you know how the tube removal goes. I can't wait to hear his 'regular' voice again; he talks funny with that tube in his throat. Take care and thanks for the prayers. God bless you. We love you.

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TUESDAY, FEBRUARY 12, 2008 06:58 PM, CST

David got on his feet!! It was very difficult for him, but he did it. Poor guy. The Physical Therapist told him that you use your stomach muscles for everything, and his were cut straight across. He had to cough as soon as he was up; which was good; but very painful for him. The nurse gave him a pillow to push against his tummy, and that only helped a little bit. The incision is just below his belly-button (you will see that in the photos), so it is a pretty high incision. It was good to see him up and standing again. Then we got him into a standing position again later in the day. He is so brave. Yes it hurts, but he still tries to do it~~he knows he needs to in order to get better! We wish we could take the pain away, or take his place. We so hate to see our child go through this. This is so awful! Please keep praying for him.

It looks like David's roommate, Oscar, is going home tomorrow. We are happy for him. Of course we wish we were going home; that would mean David felt better. His weight has gone down to 88 pounds. We can't wait until we get him home and I can cook for him again. We don't know how long we will be home, tho. He was supposed to start chemo again Feb. 25, but we are not sure if he will be delayed or not. His next chemo treatment is Methotrexate, and that is the one that causes mouth sores. Those mouth sores can go all the way down the digestive system, and they do NOT want any sores on his bowel resection!! So we are in limbo.......again! One thing about cancer; there are no time tables or calendars or schedules! You just kinda have to go with the flow.

Please pray that David feels better really soon! He is on the mend, but we want him to be pain free and back to being David. He hasn't smiled in days, and we miss it!! Thank you for your prayers. God bless you.

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TUESDAY, FEBRUARY 12, 2008 10:13 AM, CST

Jennifer stayed with David last night. He is still running a fever, but it has gone down some. He had the dressing taken off his stomach incision, now all that remains is tape and sutures. They said the tape will fall off in 10-14 days, and the sutures will dissolve on their own. I am really happy about that, I didn't want him to have to go in for suture removal on his tummy. He gets the staples out of his leg on Feb. 28. We don't know yet if chemo will be delayed or not. I will keep you posted on that one.

David is having trouble breathing. He says it hurts to take a deep breath. They are keeping an eye on that; it is probably just his stomach that hurts; but he says it is his chest. Poor baby. But they said that either tomorrow or the next day he gets to have the NG tube removed! Then they start to feed him liquids, then on to solid food. He can't wait for that! He is so hungry. Poor baby. But it seems that we are finally moving forward in his healing. We know it will still be a long recovery; made longer by this new development; but David is strong. He is just so skinny!! But the surgeon said he is a tough kid. He said he was so impressed; he said David should have complained more because it was so bad. David is such a trooper. His courage is amazing. Every time a doctor comes in and asks him how he is, he always says 'fine'. We know he is not fine. But he is not a complainer! The only times he has complained is when he wants to go home. We have to ask him what his pain level is, he doesn't volunteer it. Please keep praying for him.

He has to get out of bed today, so please pray that he will be able to do that. We know it is important, but we don't want him in pain. Just pray he starts to recover rapidly. Thanks.

Well, I will post more later. I will let you know how it goes getting him out of bed. Thanks for praying, God bless you.

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MONDAY, FEBRUARY 11, 2008 11:25 AM, CST

Quick update. David is running a fever of 102.5. His nurse drew more blood to run a test to see if he has a bug or what. He might be put on a broad-spectrum antiobiotic. He is on an antibiotic now, but they might want one that covers more problems. I will post more as more happens. Please get used to having more than one post to read a day! This is my way of journaling what is happening, and you get to share in that! God bless you all.

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MONDAY, FEBRUARY 11, 2008 10:00 AM, CST

Rachel gets to stay! Yay! We are so happy about that. Rachel is very happy about that. I guess her boss realized how important it is for her. It isn't like we planned this, that is for sure. So that is the good news for today.

David is in a lot of pain. He did get one of the drains removed from his leg, and that was good. He said it kinda hurt coming out, but it was ok. But his stomach is really hurting. He isn't sure if it hurts on the inside or the outside, but he is in pain and can't tell where it is from. He is also running a fever, which is normal for post-surgery, but still not ok. His epidural ran out last night, and he was in a lot of pain. He refused morphine (because of the panic attack he had the first time he had it), and the pain got way too intense. Rachel stayed with him last night; so when we got here I told him he needs to take the morphine, and he did. Now he is resting a little more comfortably. Oh, they did refill his epidural, so it is working again. His leg still is not bothering him too much, just when they touch it. The stomach is still the problem, just in a different way now.

Dr. O'Donnell just came in and saw David. He said he was surprised about the intussusception as much as anyone else. He said, "that happens in newborns!". The other doctor, Jennifer, said "intussusception? In a 13-year-old?!" They are all so amazed that it happened to David. Dr. O said David is getting his money's worth~~~chemo, leg surgery, tumor removal, knee replacement, abdominal surgery, bowel resection, etc. Poor kid. Dr. O said he would have expected tyhplitis, that is rare, but happens in kids undergoing chemo. He said that David is not 'young' but he is very thin, so typhlitis his more 'likely'. He NEVER would have expected intussusception. But I have learned that life with David~~expect the unexpected!!

The pediatric surgeon came in yesterday and said that David's intussusception was pretty bad. A large section of the intestines was involved; he was able to get some of it back where it belonged. He did have to remove a total of 15" of bowel (and his appendix). But he expects him to make a full recovery. We will be here for at least another week. They took so long to find it because they weren't expecting David to have intussusception. But that is something that, unless found in the first 24 hours, causes death to the tissue. The surgeon said that there was quite a bit of dead tissue in David's, and he probably had it for a couple/three days. He said he is glad David is now going to get better, instead of continuing to get worse. Basically, David was laying there dying and nobody could figure out why. But that is all 'water under the bridge' now! Finally, a week after cancer surgery, David is on the road to recovery!

Please continue to pray for David. Please pray that is pain goes away. Pray that he will start to feel better real soon. We hate seeing our guy like this! It is so heartbreaking! Again, please pray for him to feel better really soon. Thank you for your prayers. God bless you.

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SUNDAY, FEBRUARY 10, 2008 05:32 PM, CST

Jenny gets to stay!! Her bosses are totally understanding and they are letting her stay. Praise God for great bosses! Rachel won't know until tomorrow. Then, if she has to go home, we will have to figure out how to get her home. Please pray for her; she feels awful about having to leave David. Please pray. Thank you.

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SUNDAY, FEBRUARY 10, 2008 03:29 PM, CST

I have a specific prayer request for you. Please pray for my daughters. They would really like to stay here with their brother, but they aren't sure their bosses will let them. The girls totally understand that they have their jobs to do, but their bosses are putting them in a position to have to choose between their job and their very sick brother. Please pray that their bosses can have some compassion and grant them the leave so they can stay here. We aren't sure how they would get home, anyway. They came with us, and we can't leave! Please pray that they will be able to take the time off. They will find out tomorrow. Thank you.

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SUNDAY, FEBRUARY 10, 2008 10:03 AM, CST

Ok, here is a story for you. Are you all sitting down? Are you ready? Here goes. Last night after the CT scan the doctors came in to tell us the results. He has intussusception. His bowel had telescoped on itself. The CT scan was around 11:00 pm; and David was rushed into emergency surgery at 1:00am. They had to remove some of his small intestine, some of his colon, and his appendix. He is in pain, but that is to be expected. Poor baby, two major surgeries within a week! Dr. Jennifer Laine came in and asked David, "So, what next?" I am afraid to ask that question! Osteosarcoma is very rare. This problem David just had is very rare in kids his age; mostly seen in babies 6-months of age-2 years old. The nurses here have NEVER seen this in someone David's age. It figures! He has to be my rare child. So at least we know the answer to the mystery vomiting and stomach pains and blood in place of stool. The surgery took about 4 1/2 hours. Now he has to recover from that surgery as well as the limb-salvage surgery. We don't know how long we are going to be here in San Francisco. If it wasn't for the stomach issues, we would be going home tomorrow. Oh well. I am really glad we were here when it happened; instead of at home. It is just frustrating to be stuck here. And now we have 2 teams of doctors; the pediatric surgeons, and the ortho docs. We are a popular room!

Well, I need to go. You all have a great day. Come back soon; you NEVER know what David will cook up for me to write about! God bless all of you. Keep praying!

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SATURDAY, FEBRUARY 09, 2008 08:50 PM, CST

David had the endoscopy. They found esophagitis with a small ulcer. They took 4 biopsies, and we don't know anything yet. They are prepping him for another CT scan, with contrast, now. We hope to find out something soon. Basically, his stomach is still asleep, as well as his intestines. They said the bile is because his stomach is asleep, and it just gets backed up in his belly. He is very sleepy now, still from the enoscopy. But he said that he is starting to feel hungry. That could be a really good sign. We are having a very rough day, today. Even though he hates the tube in his nose, it is helping him to feel better. Please continue to pray for my baby. This is so hard for us to watch our baby go through all of this. Thank you. I will post as I know more.

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SATURDAY, FEBRUARY 09, 2008 12:27 PM, CST

Here is the haps now. Sometime soon David is going to be taken down for on endoscopy (or however that is spelled). It is a tube down his throat to see what is going on. Oh, he had the tube put down his nose into his stomach, and it is again pumping green stuff out. When they are in doing the endoscopy, they are also going to do a partial colonoscopy to see what is going on there, too. They have absolutely no idea why he is bleeding and barfing. We sure hope they figure it out soon. He hasn't eaten since Sunday, so they are going to start feeding him through his IV; and that has problems of its own. The main problems is if it is used long term, like a month or more, and hopefully this won't be. Anyway, I will post more later. Keep checking and praying. Thanks.

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SATURDAY, FEBRUARY 09, 2008 07:39 AM, CST

This might be the first of many posts today. Ok, here goes. Last night around midnight they had to put a tube up David's nose and into his stomach. They gave him 4 times the normal amount of Ativan to relax him, and it worked. He still threw up, but they were able to get the tube in. Then they 'flushed' his stomach looking for blood~~~no blood. So now they know he is not bleeding internally in the upper GI tract. Then, about 4:00 am David was dreaming and he pulled the tube out!! They said they will leave it out and see how he does. Well, around 6:30 he starting throwing up again~~the same green bile that they pumped out of his belly earlier. So guess what!?!? Yep, another tube; but they said a smaller one this time because they got the bulk of the junk out of his belly. He needs to tube to keep sucking everything out until they can figure out what is going on. I just don't know how much more my poor baby is supposed to take!! I feel so bad for him. I don't know when they are going to do it, but it has to be done. As long as they give him lots of Ativan, that is fine. And at least it will be a smaller tube this time. Please continue to pray for him, we just don't know what is going on with him. The second time he pooped last night was mostly blood, a brick red color (sorry if this is too much information; maybe the nurses out there could shed some light?). He has them all so stumped!

I don't think he will be doing any 'walking' today. As good as it is to see him up; I really can't wait to see him on 2 feet! Little Teagan is such an inspiration to us. She is a little girl from Reno who had surgery in October and she is putting weight on her 'new' leg! David has a while before he can put weight on that leg, and I can't wait for that day!

Well, I need to go. You all take care and keep checking back; this is going to be a long day. Thank you in advance for your prayers.

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FRIDAY, FEBRUARY 08, 2008 08:20 PM, CST

David just had another X-ray. Let me tell you, this child is going to glow!! They are looking to see if there is a blockage in his intestines, or if his intestines have folded in on themselves, or what. They are reluctant to rush into surgery in pediatric cases, so they are going to try to figure it out other ways. They have drawn his blood, and they are looking at it from that angle, too. You know, I am so frustrated. I tell God that I know He loves David more than I do (hard to imagine; I love him so much), so I want Him to please touch and heal my son. Please pray that they can figure out what is wrong without surgery. I really don't want to put my son through another surgery so soon after his leg surgery. But, praise God, his leg doesn't hurt. Thank you for your prayers, keep them coming! We really need them!! God bless you.

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FRIDAY, FEBRUARY 08, 2008 07:25 PM, CST

I tell you; if it isn't one thing it's another. Ok, David finally pooped! YAY! BUT..(ok, you knew that was coming, didn't you? Or you should have by now) there is blood in his stool, a LOT of blood. Bright red blood. So now they are trying to figure out what they are going to do about it. There was talk about a CT scan. The surgeons are talking to the GI docs and they are putting their heads together and trying to come up with a plan. Please pray that it is nothing. David can have nothing to eat or drink until they figure out what they are going to do. Please pray that they can find out what it is and fix it. Needless to say, David is scared. He is still in pain, so that didn't even fix the 'problem'; maybe because that wasn't the problem. It is going to be a long night. I am staying with him tonight; and every time I stay with him it is long. His worst nights seem to be the nights I stay with him. Oh well, that is ok, we will get through it. Just continue to pray, please. I will post when I know more. Thank you.

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FRIDAY, FEBRUARY 08, 2008 12:52 PM, CST

We are still struggling with the stomach issues. He went all day without throwing up, and then he threw up about 9:00 last night, again sometime in the middle of the night (Jennifer was with him), and then twice so far today. His stomach is very distended and quiet. We are just going to make him get up and walk at least 3 times a day to get his belly 'awake'. The doctor told us that his stomach and bowels are still asleep. He said that his system took a bigger hit during surgery then they anticipated. They are concerned about his nutritional needs, since they are not being met, but he said this is something that will resolve itself in time. It is just taking David's system longer than it should to 'wake up'. They have taken him off of all narcotic pain medicine, and that should help. His dressing change went well; the incision looks really good. There is no drainage from the site, just from the drainage tubes. The drainage from the tubes has slowed WAY down! As I look at it right now there is more fluid in the tube and less blood. So that is a good thing. Please continue to pray that he can get the air out of his belly.

The outside of his knee is numb. The doctor said that they cut some nerves during surgery, but they will regenerate. They said that he could be numb for months, but the feeling will come back.

Thanks for all your prayers; please keep them coming. He really needs to get the air out, that is the only pain he is in, which is awesome! We are so glad his leg isn't hurting. I will post more as things happen! God bless you.

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THURSDAY, FEBRUARY 07, 2008 08:15 PM, CST

I neglected to tell you that the walking David did was with crutches. He will not be allowed to to put any weight on his leg for at least 6 weeks. Sorry if any of you thought he did the walking on his own. He won't be able to walk totally normal and unassisted for a year. I will post more tomorrow. Have a good night.

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THURSDAY, FEBRUARY 07, 2008 02:15 PM, CST

Well, David walked the hall! He walked about 60 feet, and he did awesome! He got a little tired, but he did it! We are so proud of him.

His little roommate is such a sweet little boy. He is actually 9, not 10. He is from Madera, CA; not too far from where we used to live in Oakhurst. He had surgery on his hip, and he is in quite a bit of pain off and on. He always asks how David is doing, asks if he is still throwing up, etc. He is such a sweetie; by far the best roommate David has ever had! He is here with his Aunt; his parents had to go home. That is so sad. But we told him that if he needs anything to let us know. His Aunt leaves frequently; you know, to go eat, shower, walk around, whatever. So he (his name is Oscar) just asks us for things; like to hand him his remote and stuff like that. We are pleased with this roommate. And the boys can relate to each other, both had surgery the same day with the same doctor.

I just wanted you to know that David was up and walking today! And for lunch he ate the whole bowl of beef broth!! Yay! He is getting better little by little. We will take the baby steps; they are the pre-curser to the bigger steps.

That is all the news for now. Jennifer is staying with him tonight, she does good. Maybe Rachel will stay tomorrow, maybe not, we will see. Thanks for all your prayers, they are working, albeit slowly! God bless you all, we love you.

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THURSDAY, FEBRUARY 07, 2008 10:56 AM, CST

David had another semi-rough night. Bryon stayed with him and he said that that David slept after 2:00am. David did throw up around 8:30 last night (before I left), but he hasn't thrown up since then. He is sleeping now, the Ativan they give him for neusea makes him sleepy.

This morning when I got here they said they want him in his wheelchair 5 times a day, including meals. We got him in his chair for breakfast; and he sat there for 30 minutes! He also ate one bite of jell-o; it was orange and he said it wasn't good; and he ate 5 spoonfuls of chicken broth. And a little bit of apple juice. That was about 2 1/2 hours ago, and he is keeping it down. The physical therapist came by and said she will be back around 1:00 to get him up and on his crutches!! Please pray that that goes well. He is seeming to be doing a little better today. He is just so afraid of getting sick at this point. He was so sick for so many days, that now he is afraid of getting sick.

Now they are a little concerned about his liver. Apparently the protein level in his liver is only 1/2 of what it should be. I don't know what we are going to do about that, tho. I guess we will see.

They are giving him protonics for his stomach (by IV) so hopefully that will help. He isn't taking his prevacid now, just the protonics. They are going to up his miralax to 2 times a day. They have to get the bowels 'woke up' and get them moving. The doctor said the X-ray showed very little stool, but a lot of air. So we need to get that air moving.

The are hoping to take the epidural out today; they have already backed off on the meds going through the epidural. He wants the epidural out so they can take the catheter out! That will be good.

Bob, thanks for writing! David says he sorta remembers you; but we sure remember you! He wouldn't go to Sunday School unless you were teaching! He absolutely loved you! Thanks for taking the time to drop him a note here!

Thank you all for your prayers and your love. Please keep them up, we need it! Keep coming back for more updates. I will update after he has his physical therapy 'experience' on his crutches. God bless you all.

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WEDNESDAY, FEBRUARY 06, 2008 01:08 PM, PST

We are still struggling with the stomach pains. David had to have 2 more X-rays this morning. They are trying everything to find out what is wrong; we have the doctors stumped. They cannot figure out why he is having such stomach issues. Please pray that we can get this figured out! It is so hard to see him like this! We really thought he would be feeling better by now. Grrrrr. It is so frustrating.

They did get him up and sitting in a wheelchair this morning; he wasn't happy at all! But we need him to get up out of bed. He is being so brave. He actually stayed in the chair for about 23 minutes! We wanted him to do 30 minutes, so 23 is not too bad. He wants the catheter out, but he can't get it out until he can walk to the bathroom. Well, walk being a relative term :)

Well, I will keep you posted as I know more. They said they will tell us what is going on as they know. God bless you.

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WEDNESDAY, FEBRUARY 06, 2008 08:22 AM, PST

I forgot to tell you that David had to have an additional 2 units of blood; for a total of 3. His counts are really good now. He looks better, he has more color. Please continue to pray!

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WEDNESDAY, FEBRUARY 06, 2008 08:02 AM, PST

Yesterday David was in a lot of pain, but it is not his leg that hurts, it is his stomach! He kept getting waves of severe pain in his stomach. No pain meds were working, so they took an X-ray of his stomach. He has a lot of air moving around there, and that is what is causing his pain. He threw up a few times last night (I stayed with him), and it tested positive for blood. So now he is throwing up blood. The doctor came in around 2:00 and said they only have one more option left~~that is to put a tube down his nose to his stomach and suck the air out. We said ok, we will try that. Well, after 4 attempts, and a LOT more vomiting, David ordered it out and said it wasn't worth it. He said he will just deal with the pain and wait for the air to pass. He was so brave to let them keep on trying to get that tube down. But he hasn't had as much pain since then, so maybe he got a bunch of the air up that way. But now he is saying his back is really sore from laying in the bed; can't say that I blame him!! He tossed and turned all the rest of the night; I got VERY little sleep! Oh well, such is the life of the Koury family. Nothing can be easy for us. My poor baby, he is trying so hard. I feel so bad for him.

The doctor came in and changed his dressing. His leg looks pretty good, there was no blood on the dressing. He has a LOT of staples in his leg, and the two drain holes. He handled the dressing change well; except when his knee got bent. But we straightened it back out again and he was fine. poor guy just can't get comfortable. But at least his stomach is better; not fine yet, but better.

Please continue to pray for him. I am getting so discouraged with all this. It is so hard to watch my baby go through all this, and I want him to feel better. I sometimes feel like God isn't listening.

I gotta go. You all have a good day, and please remember David in your prayers. Thank you.

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MONDAY, FEBRUARY 04, 2008 09:25 PM, PST

Ok, are you ready? Here goes. The surgeon came out to talk to us about 12:45. He said that the surgery went fine, David was great. It took him longer than expected to get the tumor out because it was so big. He said David was 'oozy' so he did require a unit of blood. The amazing thing is........David's leg is straight!! It has been bent at a 90 degree angle for 5 months, and the surgeon told us that he didn't think he would be able to get it straight. Well, he got it straight! He said there was some scar tissue, and the tendons and hamstring were so bad that in order to get his leg straight he had to make the implant shorter than he wanted to; shorter than David's other leg. What that means is more lengthening surgeries in the future. He will have to go in every 6 months to have the leg lengthened until David is fully grown. But his leg is straight, and that is such a big deal.

We finally got to see David in the recovery room at 2:00. We were told we would be there when he woke up; yeah, that didn't happen. He was already awake when we got there. His heart rate is all over the place, and the anesthesiologist said that is because his body is registering pain, even if he isn't feeling any. They finally got him stable enough to go to his room at 7:00. So now he is in his room. It isn't a private room, but he has the bed by the window. His roommate is another patient of Dr. O'Donnell's who had a sarcoma in his hip (not osteosarcoma), and is 10 years old. So the two boys had kinda the same surgery on the same day.

David is not really doing that well right now. He is very thirsty, but every time we give him ice chips, he throws up! He has an epidural in to numb his legs; yeah, it isn't working that great. He is still in pain, and it is very hard to see him like that. Our goal that we reached was broken, he didn't weigh 100 pounds going into surgery. Ok, it wasn't much under 100, but still. We wanted him to be 100 by surgery. We know he is going to lose more. They told us that another transfusion is pretty likely; he has 2 drains at the incision site, and one is draining quite a bit. They totally expect him to need another transfusion soon. My poor baby is such a brave kid. The doctor, nurse, and both anesthesiologists told us that this was a HUGE surgery. But that being said, physical therapy will be in tomorrow to start working on getting him out of bed. I know that is necessary, but I kinda just want them to leave him alone! Please pray for him, he is having a rough time right now. Jeremy is staying with him tonight. We are just going to play it by ear who stays with him.

Please, please pray for him. He is in pain from the surgery and from the epidural. He says his back hurts where the epidural is. I don't know, I have never had one! So please pray that he can get comfortable and out of pain. We tried for so long to control his pain, and now he is in pain again. He can't take the percoset because he can't take oral meds yet; he keeps throwing up. Anyway, that is all that is happening for now. I can't say it enough~~please pray for him! Thank you.

You have a good evening. I will post more tomorrow; and I hope I have good news. We will see. Thanks again.

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MONDAY, FEBRUARY 04, 2008 11:27 AM, CST

The operating room nurse called at 10:45 to tell us that the tumor is out. David is doing good, and they got it all out. They now are in the process of putting the implant in. I forgot to tell you that the surgeon told us that the 'normal' knee replacement they put in adults has 4 moving parts; David's is custom made and has 15 moving parts! So now we are waiting for the surgeon to talk to us when he is all done. He will come out when his part is done, and then the plastic surgeon will be closing David up. I will keep you posted as I know more. Thank you for praying; keep it up!!

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MONDAY, FEBRUARY 04, 2008 09:37 AM, PST

We are in the waiting room. They took David off to surgery at 7:45am. He was very scared, but such a trooper. After they gave him the 'happy medicine' he actually smiled! He was feeling pretty good as they wheeled him off to surgery. Please continue to pray for all of us this day, it has been a very stressful and emotional day so far. He will be in surgery for 6 hours; it takes an hour and a half just to get the tumor out! I will keep you posted as I know anything. Thank you for your prayers. God bless you. We love you.

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SUNDAY, FEBRUARY 03, 2008 10:36 PM, PST

We made it to San Francisco. It took us 6 hours, but we made it. There was a lot of snow at home, so we knew the mountains were going to be covered; and they were. The roads were pretty bad for awhile, but God got us here safely; thank you for your prayers.

Please pray for David; I know that goes without saying. He is pretty scared and nervous; but who could blame him? His life will be forever changed (again) in just a few short hours. We gave him one bright spot today, we took him to the ocean to see it. He loves the ocean, and he wanted to see it. We figured we came all this way, the hospital is really close to the ocean, we couldn't not let him see it. So, he did! I told him that he can picture that as he is falling asleep. Or he can picture Jesus holding the doctor's hand during surgery (thanks, Bev, for the website). He has cried a little, but he is trying to be so brave. He is such a great kid. We are so proud of him.

Well, it is late and we have to be at the hospital at 6:30 tomorrow morning. Please remember to pray for him. Thank you very much. God bless you.

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SATURDAY, FEBRUARY 02, 2008 08:41 PM, PST

Sorry I haven't written sooner. We did get to go home. We didn't get home until 11:30 last night, but we did go home. They told David he could go home if he drank 2 liters of water every 6 hours; his kidneys are somewhat damaged. David was glad to be home, even though it will be for only 2 nights. We leave tomorrow for San Francisco. Please pray us there, there is a storm coming! Of course there is, nothing is easy for us! But I know God will get us there. We have to check into the Family House in SF by 4:00; so we have to leave early enough to get there in time. There is supposed to be another 1-2 feet of snow in the mountains over night. Again, please pray us there. Jeremy and Lucy are coming, they are following us in their 4X4 Toyota Tacoma. They will have Jennifer with them, that way David will have room in the back seat. We are a little stressed right now trying to get everything done, but we can only do so much. I did get all our laundry done; yay! I am now trying to finish getting the house picked up. The dogs are at the kennel as we speak. We had some great offers for a house sitter; but we weren't comfortable with someone staying here when our woodburning stove is our only source of heat. Trust me, if we need someone in the warmer weather we will take them up on their offer! It was GREATLY appreciated; it is just a huge house to try to heat with just the woodburning stove, and we are used to it.

David is getting really scared. He is handling it ok, he is just getting really quiet. He is like his mother; when stressed he gets quiet. His sister, Jennifer, is the exact opposite; when she is nervous or stressed she gets 'chatty'. But he is doing ok. He is drinking his water, but he isn't eating. He was up to 100 pounds, but I am afraid he is going to lose a couple now. The Neupogen took away his appetite.

Speaking of the Neupogen, I don't have to give him the shots anymore. His counts are up to over 7000! But they want the Neupogen stopped because they want his counts to be high on his own, not because of the drug. I drew labs (blood) today and I will do it again tomorrow. If there is a problem they will let me know before surgery. So far so good. We just want this over with soooo bad!!

Well, I gotta go finish packing and getting ready for tomorrow and the next week. Please pray us there, and please pray that David comes through the surgery ok. Please pray that he will heal fast and we can leave the hospital soon. The doctor said he should be there a week, but hopefully we can get out sooner. God bless you all.

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FRIDAY, FEBRUARY 01, 2008 01:13 PM, PST

Ok, things are what they are. The doctor just came in and said he agrees with the infections disease department and it is not shingles. They won't know for sure until all the results are in (supposedly tomorrow; maybe Tuesday), but they are going ahead anyway. Surgery is on for Monday.

Now for the hiccup~~~you knew there had to be one, right? We can't go home right now. His creatin (?) level is too high, so they are starting him on IV fluids to get them down. For those of you who don't know what that means, his kidneys are affected. The doctor says it is because of the anti-viral meds they gave him; but it could be from the chemo. So he is to drink a lot of water and get these fluids. Then they will run his blood work again and we will go from there. Please pray that his kidneys recover from this.

Gotta run, Bryon just brought me a salad and I want to eat! Check back later. Thanks

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FRIDAY, FEBRUARY 01, 2008 11:52 AM, PST

I forgot something else. Remember that cute baby fuzz on my baby's head? Yeah, well he's losing it. He will be bald again before we know it. It will grow back again, someday. But he is losing all that cute fuzz now. Just thought I would let you know. Thanks for visiting!

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FRIDAY, FEBRUARY 01, 2008 08:50 AM, PST

I forgot to tell you something. I asked the doctor how long David's incision will be, and he said 13". It will be 6" below his knee and 7" above the knee. It will be on the inside of his leg, with part of it on top of his knee. Sorry I forgot to tell you that. Sounds like a pretty long incision to me!

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FRIDAY, FEBRUARY 01, 2008 07:32 AM, PST

We are now in a holding pattern. Bryon stayed with David last night and did NOT get a good nights sleep. If we get to go home today, you will need to pray us home~~he is tired! Of course, if he is too tired I will drive, I just would rather not drive on the freeways. I like to drive ok, just not on freeways. We will see.

David's doctor came in last night and said that maybe we could give David oral anti-viral meds at home and go home today. The head of infectious disease came in and looked at David's chest and said it does NOT look like shingles. She said it isn't following the pattern of shingles. She thinks it was probably just a reaction to the tegaderm. I was wondering if maybe because he had no infection fighting abilities, (and VERY sensitive skin), and has skin problems (like eczema) anyway, maybe that allergic reaction just got infected. She said it takes a while for an allergy to manifest itself sometimes. So an allergic reaction 3 months after 'exposure' is perfectly normal. So on that note, it looks good for us going home today.

BUT (there is always a 'but'), David has been running a temp of 99.3. I am praying that that is not a big deal. This room he is in is very warm, and Bryon said he was covered up with his 'snuggle blanket' (a blanked he received from a woman we don't know who does this kind of thing for cancer kids), so that could be part of it. I don't know. I guess we just wait and see what the doctor says when he gets in here.

I need to clarify something. Some people are under the impression that once David has surgery he is fine and it is 'all over'. That is far from the truth. For one thing, the first thing we need to find out after surgery is the necrosis (death) rate of the tumor. Then we find out what schedule of chemo he will be on. He could have 29 more weeks of chemo; 40 weeks of chemo; or up to 2 years of chemo. And it is a lifetime of bone scans, CT scans, and maybe MRIs. He can go into remission, but he will always be "at risk" for a recurrence. We pray it never happens, but we need to be realistic. The support group website we are on has kids that have recurred; one girl in particular got more in her lungs just a month or so after her surgery to remove the ones in her lungs! He will NEVER be 'out of the woods' so to speak. Sorry guys, I guess you will just have to be praying for him for the rest of his life :)

Please pray that we can go home today. They will be talking about him during rounds and will make their decision then. I will keep you all posted. Thank you again for your prayers. God bless you. We love you.

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THURSDAY, JANUARY 31, 2008 03:14 PM, PST

We just got back from San Francisco. Here is the haps~~~DAVID GETS TO KEEP HIS LEG!!!! You have no idea how excited we are for that! The doctor was excited; we have never seen him so excited! That extra cycle of chemo did the trick and the blood vessel is no longer involved. And David is happy he gets to keep his birthmark, silly kid! Praise God, we were ambulanced over again and we were both allowed to go in the ambulance with him; Bryon didn't have to drive. That is a HUGE answer to prayer!!

Now, another prayer request. If what David has on his chest is indeed shingles (zoster) then the surgery will be postponed until Feb. 11. Dr. O'Donnell said that if he has shingles the stress of surgery will make it a lot worse; the virus will go crazy. We do NOT want that to happen! But we don't want the surgery postponed, again! So please pray that he doesn't have shingles. We will know for sure on Saturday.

More prayer~~one of the doctors said that maybe we could go home and do his anti-viral through his broviac. Maybe if he knows I have a friend who is a nurse, and lives close by (Val), maybe that will help him let us go. We really need to go home. One reason is we didn't bring our cell phone chargers~~we weren't going to be here long and we have car chargers. We have no way of talking to our other children. Please pray we can go home!

If we can't go home, then they will be transporting David to UCSF on Sunday and admitting him then. He is scheduled for surgery Monday at 7:30, so if we go home he has to be there at 6:00am. If we get to go home, we are coming back on Sunday because we don't want to leave at 2:00am on Monday! Bottom line~~we want to go home!!

Well, that is all I know for now. I will let you know what we find out from the doctor here about doing his meds at home. Please pray that we can. I know I sound like a broken record, but we really want to go home. By the way, the nurse just came in and David's ANC is 2961! Wow, that Neupogen really works! He did have some bone pain, but it was bearable. Anyway, gotta run. Take care. Thank you for bearing with us as we fight this fight; and loving us through it! God bless you all. Thank you for your prayers. We love you.

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WEDNESDAY, JANUARY 30, 2008 11:12 PM, PST

Ok, guys, aren't you praying enough? Just kidding. Another problem. We came to Oakland over the bad roads, but we made it ok. We went to the outpatient clinic so David's nurse could check out the blisters on his chest around the broviac, and 'all hell broke loose'. His nurse had an errand to run so she turned us over to another nurse, who called the on-call oncologist, who called infectious disease, who took a culture of the blisters, who admitted us to the hospital. Yes, admitted us. We are here for who knows how long now; maybe until surgery. They are trying to work out getting us to San Francisco tomorrow (by ambulance again) to meet with the surgeon. They aren't sure what he has, but they don't like the looks of it. They think it could be shingles~~that maybe chemo has stopped the ability of the vaccine he had to prevent chickenpox from working. But he hasn't been around anyone with chickenpox. They are erring on the side of caution; and they are militant about this kind of skin problem. We packed for an overnighter, not an all-weeker! Good thing the family house has a washer and dryer!! If we are stuck here until surgery I will just have our daughters bring us some more clothes. This really sucks! We had NO intention of staying in the hospital, we were all going to stay in the family house. David's nurse came back and couldn't believe what happened. She is such a sweetheart; she started the antiviral meds and then took us up to his room at 7:30. This time he isn't on the oncology floor~~he is on the 4th floor in an isolation room. A pretty small room, but it is great. The bathroom is pretty big, and the room has a window! It has it's own double doors; it is a negative pressure room. Usually he is in the positive pressure rooms on 5-south. Now he is on 4-south. They have to 'suit up' before they come in here; gowns, masks, gloves, etc. It is nice and private, but we don't want to be here!! David was VERY disappointed when he heard that 'admit' word! So, here we are. We still don't know what is going to happen, but I will let you know as soon as I know.

The MRI went fine. It took about 1 1/2 hours. I went in with him, and I forgot to take off my watch. It stopped as soon as I went in the room and I thought it was dead. But as soon as I left the room it started to work again! I was so happy! I just reset it and it is as good as new! David was a trooper through the whole procedure. He absolutely hates MRIs! But it went off just fine and she said the pictures were great! Hopefully we can find out tomorrow that the tumor is off the blood vessel. Please pray we are able to do a limb-salvage on him!

Well, it is late, and we have had a big day. I am staying with David tonight and Bryon is at the family house. Please pray that things work out for us there, we were only reserved for one night, and we have no idea how long we are going to be here. They have a waiting list, and there are 3 people on it! If we lose our place there, we don't know what we are going to do. We cannot afford to stay in a hotel. When we came here in October we didn't have the family house for the first night, I stayed with David, and it cost us $175 for one room for one night! We absolutely cannot do that again! Please pray we don't lose our spot.

Again, it is late. You all have a good night, and I will do my best to let you know what is going on tomorrow. Keep coming back; you NEVER know what is going to happen on the Koury Cancer Coaster! God bless you all!

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TUESDAY, JANUARY 29, 2008 09:21 PM, PST

Well, I had to reschedule my post-op appointment, again. The first one was in November, and we had to talk to the surgeon so I rescheduled it for January 31. Well, that is the day of David's pre-op appointment, so I had to change it again. Now it is set for Feb. 21; I hope David isn't in Oakland having chemo! Actually, I think he will have chemo the next week, or the week after that. His post-op is for Feb. 28, so we will see how the timing is for chemo. Dr. O'Donnell told us he gives his patients 3 weeks after surgery to rest up for chemo; which would put David starting chemo again on Feb. 25. Again, we will see what happens.

Just thought I would let you in on me, for those of you who know about my major surgery almost 6 months ago. Take care and have a good evening. It is still snowing (lightly) and VERY windy. For those of you who have lived here (and those of you who still do) you know that the wind blows all the time, but gets way worse when a storm is blowing in. Please pray us to Oakland tomorrow. Thank you. God bless you all, we love you.

P.S. It was great to see Greg today! Thank you for the Subway gift card! We hope to see your whole family next time! We miss you guys. Take care.

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TUESDAY, JANUARY 29, 2008 04:42 PM, PST

I heard from David's nurse today, and things are not good. His ANC is 100. She said he has NO infection fighting abilities now. She said nobody will do surgery on him with those counts. His bone marrow is not working. Remember I said if it isn't one thing it's another. Well, the other happened. Now I have to give him injections every day. It is a drug called Neupogen and it is to boost his bone marrow. One of the side effects is bone pain. Isn't that great!?!? We spent a lot of time trying to get a hold on and eliminate his bone pain; now I have to give him medicine that will cause bone pain! Good thing I still have his percoset! I am not a nurse, as I have said before, so giving my son that injection was scary. I did it, and now I have to do it daily. Just one more thing to overwhelm me! The Critical Care home nurse said that it starts to work in 24 hours, and by 3 days his blood counts should be great. That is good, we really don't want the surgery postponed again! Please pray that this stuff works good for David. We have to draw blood tomorrow before we head over to Oakland; and again Friday.

Guess what? It is snowing! I bet you are surprised, huh? It is going to be fun tomorrow. Please pray us to Oakland and San Francisco and then back home again. Thanks.

Well, that is what is happening now. I will post tomorrow and let you know how the MRI went. Then I will try to post as soon as I can after we talk to the surgeon on Thursday. Please pray that he will give us good news. God bless you all. We love you. Thank you for your love and prayers. We appreciate them more than you know.

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MONDAY, JANUARY 28, 2008 07:07 PM, PST

Well, I called the doctor. She said to take the tegaderm off immediately and put gauze on the site. I am not totally comfortable with that because now dirt can get to the site through the gauze. It is no longer sealed from dirt. For those of you who don't know; the tegaderm is a clear plastic adhesive cover. Like a bandage, but big and clear. She said there are other things we can use, she just couldn't get them to me before Wednesday when we will be in Oakland anyway. So we are to leave the gauze on to heal the blisters, and then on Wednesday they will see him and we will figure something else out. So that is the haps on the broviac site.

Even though the sun came out yesterday and melted some of the snow, we still have 6" in the backyard! And the weather forecaster said that there is a chance of snow all this week! I love the snow; but we have to go over the mountains on Wednesday to get to Oakland. Oh well, we will just take it slow and easy going over. We don't have to be there until 4:00, so we don't have to leave super early. And we aren't going for a chemo treatment, so we won't be as pressured to get there. But we would still like you to pray that we get there safely and that the storms stop; at least for Wednesday :)

Well, thanks for visiting. Have a good evening, and I will write more tomorrow when I hear the results of the blood work from today. God bless you all.

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MONDAY, JANUARY 28, 2008 08:34 AM, PST

We woke up to another 2 inches of snow! And under the snow is ICE! The roads are pretty slick; but everyone made it to work ok. The only problem, it was so windy while it was snowing that our patio is full of snow; and so is the woodpile!! My fire didn't want to start this morning (snowy kindling), but I finally got it going. Now the Family Room is all toasty warm. Fortunately, the wood isn't too wet, just snow covered.

Yes, Bev, snow is not abnormal here. We live in northern Nevada~~about 20 miles east of Lake Tahoe. I love where we live~~we have it all! The mountains, Lake Tahoe, and snow. It just gets too hot for me here. But it is dry, hardly any humidity, which I love. It can be raining or snowing here, and still we can't get up to 100% humidity. We are high desert. The snow isn't for everybody; but I enjoy it. I love having my 4 seasons. I grew up in So. Cal., and we only had 2 seasons there. I love the Fall colors here, and the snow! Anyway, the snow is normal for this area. We have just had a couple of bad winters~~way too dry.

Well, I need to go draw blood, flush David's broviac, get all his meds ready, and feed him breakfast. You all have a good day. I will post when I hear from the doctor about the blisters under the tegaderm. God bless you all.

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SUNDAY, JANUARY 27, 2008 08:44 PM, PST

The wind is really howling now! And it is snowing again. I am so glad that all of our children have 4-wheel drive vehicles. Well, our son and daughter-in-law have one 4X4 truck and a front-wheel drive Honda Civic. And Bryon has a front-wheel drive car. But at least that is better that real-wheel drive in the snow! If the snow gets too bad, Bryon just takes my Pilot.

Well, I just thought I would update you on our weather. Please pray that the storms stop by Wednesday when we have to go to Oakland for David's MRI. Also, please pray that the tumor has shrunk off the blood vessel so we can do the limb-salvage.

I changed his dressing, and the 'rash' looks like little blisters; so I will be calling the doctor tomorrow. Like I have been saying; if it isn't one thing it is something else. I will post after I talk to them and let you know what they say.

Thank you for your prayers. Thanks for visiting David's site. Keep coming back; and don't forget to read the 'my story' every now and then; I update it at times. God bless you all.

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SUNDAY, JANUARY 27, 2008 02:25 PM, PST

We woke up to a Winter Wonderland this morning; over half a foot of snow on the ground! It is so beautiful. And it is very windy and cloudy; another storm is blowing in! We just hope the storms end by Wednesday. We had leftover chili that I made a couple days ago, and we are all in the Family Room with the warm fire, so we are good.

David now has a rash under the tegaderm dressing on his broviac. He has very sensitive skin, and I think he is just reacting to the adhesive. I have to change the dressing tonight, so I will talk to the doctor about it if it doesn't look better tomorrow.

Well, you all have a good day, and I will keep in touch. God bless you all.

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SATURDAY, JANUARY 26, 2008 07:57 PM, PST

Today was a pretty quiet day. When David's counts are low we make him wear a mask outside. He wears it if someone comes over, too. A friend of mine came over today and she had a hard time not kissing him. I told her she could come see him, but she couldn't kiss him. She watched me flush his broviac and she couldn't believe I have to do that everyday. But we have to keep the lines clean. She didn't understand why I had to use heparin in the lines. She was afraid that using the heparin made it worse for him if he got a cut; but I told her 'no, I don't use that much'. I have told her before what I do every day, but her seeing it made it more real for her; and she was impressed.

It is interesting; people ask us how we do what we do, we just tell them 'you do what you have to do'! We don't really know how we get through this; God gets us through it. We know we could not do this without Him! We don't know what the future holds, but we know Who holds the future. As the surgery date gets closer, I am getting more nervous. When I think about it my stomach starts to churn. A friend of ours (more Bryon's friend) took time off work to go be with us during surgery. He has no idea how much that means to us. The surgery is in San Francisco; not close by. He has to drive 4 hours away to be with us, and that means a lot to us.

Please keep praying that the weather is good on Wednesday when we go over the mountain to Oakland for David's MRI. It seems like every time we go it either rains or snows; starting from the first time in October!! Oh well, we have the great Honda Pilot that does great! It would just be nice to drive in Bryon's little economy car, funds are tight and gas is expensive. Well, we have all summer to go in the economy car :)

Well, I will close for now. I will post later. Thanks for visiting. Welcome back, Bev!



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FRIDAY, JANUARY 25, 2008 05:01 PM, PST

I heard from Andrea today~~~his ANC (remember, the normal is between 1,600-6,200) is only 270. The risk of infection is high now. She again told us to keep him away from crowds and sick people. His hemoglobin is holding steady at 10.4 and that is great! His platelets have dropped down to 82,000 (normal is 200,000-400,000), so that is really not too bad. She thinks he has 'bottomed out' and his counts will start to recover now. We sure hope so. They want to make sure his counts recover sufficiently by surgery. We are praying that they will.

That is all that happend today. It snowed again last night. I think my backyard will stay white for the rest of the winter! But that is ok, I do like the snow. I have my nice warm fire to be in front of, so I am good. We had bought 2 cords of wood (our wood-burning stove is our only source of heat) so it will last us for a little while. We do stay nice and warm downstairs~~upstairs is kinda cold, though. But everyone has a nice warm bed, so that is good.

Anyway, I gotta go. You all have a good evening and thanks for visiting. God bless you. We love you.

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THURSDAY, JANUARY 24, 2008 12:56 PM, PST

The blood draw went good. I ran it to the lab, Bryon took the day off because it is our anniversary and he was in the shower. Parker didn't come until late because his mom had a doctor appointment (she is pregnant). So I was able to run the blood to the lab.

David is not looking that great today. The dark circles around his eyes are getting darker. He says he is pretty tired. I know that is to be expected, but I hate seeing him like this. A lady at church told me that she has no idea what I am going through; and I told her she is right! I can't even imagine what I am going through! People think they can relate; for some reason, but unless you have a child with cancer, you have NO idea! I know others try to be encouraging by telling me that they understand (they don't), or by telling me that they are scared for their child's life (yeah, right~~not like we are), or that their child's life is uncertain (again, not the same), and I appreciate the attempt at encouragement; but it just trivializes what we are going through. The only ones who really understand are the ones that have been there. We would rather people just tell us that they don't understand and they are praying for us. This is 'hell on earth', and we don't expect people to understand; just hug us and cry with us and pray for us! And be there for us; even if you don't say anything! Saying nothing is better than saying the wrong thing. Anyway, sorry for the 'venting' again.

I will post when I find out his levels are. Have a good day. I will keep in touch. Thank you for your friendship and your love. We love you.

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WEDNESDAY, JANUARY 23, 2008 07:55 PM, PST

Well, we got through another day. It is very cold here, not getting out of the 20's. It snowed last night, and it is supposed to snow again tonight. Actually, it is supposed to snow all week. We are praying the roads are clear on Wednesday of next week, we have to go to Oakland for David's MRI. We are praying that the tumor has shrunk, and maybe still shrinking! We will find out next week.

David is looking really tired. He even took a nap today~~something he absolutely hates to do! I draw blood again tomorrow, so we will see what his counts are when they call on Friday. I am sure they are dropping like a rock~~can tell by the way he acts. Poor guy.

Well, nothing really happened today. Tomorrow is Bryon and my 27th anniversary. Can't believe we have been married that long. Hopefully we will have a good day. I will post tomorrow. Take care and God bless you all. We love you.

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TUESDAY, JANUARY 22, 2008 04:53 PM, PST

I talked to David's nurse (not Andrea) from Children's Hospital, and his counts are dropping, as expected. His ANC is 400; the normal is 1,600-6,200. We were told they transfuse when hemoglobin is 7 (8 here because of altitude), and his is 10.4. We were told to keep him away from crowds and anyone who is sick. You know, this may be an understatement, but we REALLY hate cancer!! Especially childhood cancer; especially cancer in our son! The chemo is already affecting his liver; his liver enzymes are elevated. He is in a 'catch 22' position; he HAS to have chemo or he will die~~the chemo could kill him!! I guess the chemo is the 'lesser of 2 evils'!!! And they are both evil, let me tell you! Sorry to vent!! I hate this so much.

We were also told that if he starts to run a fever~a temp of 100 twice within a couple of hours or 101 even once~we are to take him immediately to the hospital and call his doctor at Children's. They said once that they would care-flight him to Oakland; we don't have a children's hospital here. Please pray that he doesn't start to run a fever, and that none of us get sick! We need him to be healthy for surgery.

Well, that is what is happening here. Keep coming back for more updates. God bless all of you; we love you.

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TUESDAY, JANUARY 22, 2008 10:29 AM, PST

Good morning. It is still snowing here, and freezing cold!! It has been snowing off and on since yesterday. I think it is so beautiful!

Well, we went to the orthodontist; and he is calling in the prescription for the mouth rinse that will numb and heal his mouth. His teeth are looking really good! We don't know how much longer he will be in braces, probably at least another year. But at least we will be ahead of the game on the mouth sores now. So that is good.

I just wanted you all to know how the orthodontist appointment went. Surgery is in less than 2 weeks. I think one of the hardest things about being so far away when we go to the hospital is that David never gets any visitors. We are too far away for friends and family to come visit him. That makes it really hard on him, Oh well. All the kids will be there when David has surgery; even though David probably won't know or remember them being there. But Bryon and I will know they are there. We need all the support we can get at this time in our lives.

David's hair is growing back a little. It is so cute. It is like baby hair~~all fine and wispy and soft. You can really tell the difference between baldness from shaving and baldness from chemo! He has no 'stubble', just baby hair. It will grow in just to fall out again. Oh well, that is life with cancer, I guess.

Well, I have to go. You all have a good day. I will post as things happen. I will post when I find out what his blood counts are. Andrea from Children's Hospital calls me with the results. I will let you know then. God bless you all. We love you.

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MONDAY, JANUARY 21, 2008 10:44 AM, CST

Good morning~~I hope everyone is having a good morning.

Rachel did the blood draw this morning and she did great! She said she is isn't ready to go solo, but that's ok. She is usually at work when I do the labs anyway, but you never know when we might need her to do it. She said she could do it if I talked her through it. I think she did a great job, though. Then Bryon and I ran the blood to the lab while Rachel watched Parker. She was a big help today.

Everyone is home today. Bryon and his friend are installing the garage door opener now. It is the first chance he has had to install it since we bought it. We sure took for granted having it, that is for sure.

Today Jenny has to take the 3 dogs to the vet for their shots. We have to board them when David has surgery, and they have to have their bordatella shots. We hope the vet gives us a break on the cost (Jenny used to work there), it is kinda spendy and we have nobody to take care of them while we are gone. But, like everything else, we will do what we have to do.

Well, that is all that is happening right now. I will post if anything happens. Please keep praying for David and for us. Thanks. God bless you. We love you all.

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SUNDAY, JANUARY 20, 2008 03:30 PM, PST

Good afternoon. We were all able to go to church as a family today, yay! David wore a mask, just in case, but we were all there. They had a special prayer for him, and we were very touched. But we did get some devastating news; our pastor is leaving. We are not sure when, but he resigned today. We are very sad about that. We will be very sad to see him go. We hope he will be around to see us through this time with David; but we know he has to do what God leads him to do. We are excited for him, but very sad for us. Anyway, it was good to be in church as a family.

David is getting mouth sores again, and he has an orthodontist appointment on Tuesday, so we will see what he says. We will for sure get the mouth rinse from him. He would get the mouth sores whether he had braces or not; they are brought on by the chemo, not the braces. The braces just irritate them, and raises the risk of infection. I will keep you posted on what happens at the orthodontist.

It is snowing as I write this. We still have snow in the backyard from the last storm. Our front yard is in the sun, and we are really glad about that. Our driveway stays clear after we shovel it, and the neighbors across the street have to hassle ice build-up from the frost in the morning. Once the sun comes out, our driveway is dry! The kids don't have to work tomorrow; neither does Bryon; so they don't care if it snows! I have to work tomorrow, tho. Everyone gets to sleep in but me! Oh well, that is the way it goes.

Rachel is going to do the blood draw tomorrow. She wants to do it. It will be good for her, I think. I will take it to the lab, but Rachel will do the drawing. I will post tomorrow and let you all know how it went. I have to change the dressing on David's central line (broviac) tomorrow. He hates it, but he is good about it.

Well, I need to go. Thanks for reading this. You all take care and have a good evening. God bless you all. We love you

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SATURDAY, JANUARY 19, 2008 07:26 PM, PST

Today was a busy day. The representatives from Make-A-Wish came over to interview David and get all the paperwork started for him. He is such a goofball. He can have just about anything he wants, and he wants an Apple MacBook Air; that is a laptop. He could go anywhere, have just about anything, and he picks a laptop. Silly kid. But we know we have a child who hates to go anywhere, so that doesn't really surprise us. Then after they left we had to go get David a pair of shoes, his are too small. And he is really picky when it comes to shoes, but he did find a pair at Walmart. Then we had to go to Best Buy because he wanted to spend his money he got for Christmas from Grandma (thanks mom), so he bought a PSP. Then we came home and Rachel, Jennifer, Lucy and David all went for sushi for lunch. Then the twins I used to babysit came over for a visit~~~boy was it good to see them! They will be 3 on Valentine's Day, and I really miss them. Their mom was transferred to Reno about 6 months ago, so I 'lost' them. They are two VERY precious little girls. Then when they left it was time for dinner, and now it is almost 7:30. Today went by very fast, too fast. The weekends always go by so fast, because we are usually so busy.

David's thrush is all but gone. He is feeling pretty good today. He is getting himself psyched up for surgery in 2 weeks. The time is going pretty fast, but that is good. We want this part over with. Then we will find out how many more months of chemo he will have. Like I said before, David will never be 'out of the woods', he will always be at risk for the rest of his life. He will have to have bone scans, CT scans, MRI's, echo's, and hearing tests for the rest of his life. But for now he is alive, and I am very thankful for that!

Well, I gotta go. You all have a good evening. I will post tomorrow. Take care and God bless you all. We love you.

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FRIDAY, JANUARY 18, 2008 01:29 PM, PST

Today is Friday! Yay! David ate another footlong from Subway today. Bryon works 4 days a week, 10 hours a day, so he is off on Fridays. He went to Subway for lunch for David. The Subway in Fairfield (we go to it on the way to the hospital and on the way home) is selling their footlongs for $5 each! I wish they did that here. But if it gets David to eat, it is worth it. I learned many years ago how to grocery shop cheap; so it comes in handy now! I have a food sealer, so I can buy in bulk. Of course, with my family size I buy in bulk anyway. But I can stock up when things go on sale. We will just 'scrimp' somewhere else to get him Subway.

His thrush looks better today. He still has the blisters on the back of his tongue. We got a call from Children's Hospital and they said that his blood counts look good. But she said that since we will be a week post-chemo tomorrow she is expecting them to drop like a rock soon. I guess they start to drop 7-10 days after chemo. So when I draw his blood on Monday I expect them to be lower. I will keep you posted.

Tomorrow the lady from Make-a-Wish is coming over to 'interview' David. I don't know if they are going to want to know tomorrow what he wants, but they want to get the paperwork started.

Well, I need to go now. I just wanted to post that everything is going ok. You all keep checking back for the updates. God bless you all.

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THURSDAY, JANUARY 17, 2008 07:08 PM, CST

The blood draw went great; yay!! Lucy took it to the lab for me. David is so silly~~he wants to watch the blood squirt into the tube, then says it looks gross! Then if I ask him to hold them for my while I get the lab bag ready, he holds them with just his fingertips! I told him it is just his blood; but he says it is just too weird. Silly kid.

The anti-fungal meds are doing a great job. The thrush is almost gone, but he does still have 2 blisters on the back of his tongue. He says they don't bother him, though. So he is doing pretty good. He ate 2 helpings of spaghetti tonight. And a helping of mixed veggies; didn't want to eat those. So his appetite is really picking up; we are so glad about that! Maybe we will get him to over 100 pounds by surgery!

Well, you all have a good evening and I will post more tomorrow. I try to fill you in, even if nothing is happening. Keep us in your prayers as we struggle with decisions that we have to make. Alternate plans if the tumor doesn't shrink. Pray the tumor shrinks a LOT so David can have the limb-salvage. Anyway, keep coming back and dropping David a note now and then. Thanks. God bless you all.

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THURSDAY, JANUARY 17, 2008 08:36 AM, CST

Good morning. Just to update you all, we had a good time at Jeremy's birthday dinner.

Here is a praise, David can sit normally now. He used to have to have his right leg elevated so the pressure wouldn't hurt his knee. Now he can sit with his feet on the floor! He can't do it for a long time~~he says it gets too uncomfortable~~but he was able to sit in his wheelchair at the table last night at dinner! You have no idea how wonderful that is. We haven't been able to sit at the table as a family for dinner because the wheelchair won't fit under the table with his leg up in the air. Like I said, he can't do it for a long time, but he can do it! His knee looks so much better. It has stretch marks on it (tho some have faded) from being so stretched out, but it looks so much better. The skin is really dry, again from being so stretched out, but he can't rub lotion on it. It is still somewhat sensitive to touch, but not as bad. Little things are so wonderful. His appetite has picked up some, and that is good.

I need to go draw his blood now. I just thought I would do a quick update. I will post later and tell you how the blood draw went. Have a good day. God bless you all.

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WEDNESDAY, JANUARY 16, 2008 10:03 AM, PST

Good morning, everyone. The pills David has to take for his thrush aren't too bad. They are pink and football shaped~flat footballs. We have special pill-swallowing cups, so he does ok with them. He has to take one a day for 7 days. He is feeling pretty good today.

Today is Jeremy's 26th birthday. Wow! They sure grow up fast. Sometimes it seems like he was just born. He took the day off, can't say that I blame him. We are all going to Chili's for dinner~his choice. We don't go out much, it gets too spendy for 7 of us, but it is his birthday so we are going. And they have a killer grilled chicken ceasar salad! Hopefully it will be a good day for him.

Today is also Jennifer's one-year anniversary with the state. She passed probation; I wasn't worried that she would. Today is also Rachel's one-year anniversary as a claims examiner for the state. January 16 is a big day for my children!

Well, I need to go get things done. Thanks for the prayers, keep them coming! Keep coming back for more updates. Thanks for visiting. Have a good day. God bless you.

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TUESDAY, JANUARY 15, 2008 02:32 PM, PST

I have stated in the past that if it isn't one thing, it's another. Well, it's another, again! David has thrush. He got thrush last time he had this chemo, so I guess we can expect it again in the future. The doctor is calling in an anti-fungal medicine for him to take; another pill!! He hates taking all these pills. For those of you who don't know; thrush is like a yeast infection in his mouth. The back of his tongue is all white and 'fuzzy' looking. Luckily I know what to look for, or I wouldn't have known. The nurse said we do NOT want this going down his throat. So we will be going to Costco for even more meds tonight. Poor kid. He has to take his Prilosec every day; now he is also taking the phosphorus; and now the anti-fungal. The phosphorus pills are big, we have to break them in half. I don't remember how big the anti-fungal pills are; I guess we will find out tonight. I just thought I would update you on the new development. So far his blood work looks good. We are expecting his counts to go down, but for now they are good. Risk of infection is low now. Yay! We have to be really careful when the counts drop. But so far we are in the clear for him.

I will post later and let you know what the pills are like. Have a good afternoon. God bless you all.

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MONDAY, JANUARY 14, 2008 07:50 PM, CST

You will not believe what David ate today! It was too cold to go to Subway; but he still pigged out! Ok, keep in mind that he is still feeling a little nauseous today. For breakfast he had a bowl of cereal. For lunch he ate 2 grilled cheese sandwiches and some chips. For dinner I made meatball sandwiches, and he ate 3!! Each sandwich was made from a hoagie roll with 5 meatballs. And he ate 3 whole sandwiches! Oh, and a glass of chocolate milk; made with 2% milk and Ovaltine. We want him to gain weight before surgery, and it looks like he will. I think he is making up for lost time. I love seeing him eat like a typical teenager; does my heart good. I just wanted you to know what he ate. I really don't know where he puts it! Please keep praying for him. We want him to not feel queasy anymore so he can eat more~~~YIKES!!

I will let you all go. Have a good evening. Keep coming back for more updates. God bless you all. Thanks for sending notes to David, he likes reading them.

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MONDAY, JANUARY 14, 2008 08:26 AM, CST

Something else I forgot to mention. Back when we were in SF on Jan 3, the parking garage was full, so Bryon parked on the street. We were glad because it cost $20 to park in the garage. We thought parking for free on the street was much better! Well, when we got back to the car, there was a parking ticket on the windshield! It said something about that being street cleaning or something. Did the other cars on the street have tickets? NO, THEY DID NOT!!! So the ticket cost us $40!! Oh well, just another reason for us to absolutely HATE San Francisco!! Yeah, we are just made of money, right!?!? We have a child battling cancer, so we have extra money just laying around. Do you hear the sarcasm? Anyway, I forgot to mention that, so I thought I would tell you. I paid the ticket this morning, that is how I remembered it. You all have a good day. I need to draw David's blood now. I need to run it to the lab myself, my Daughter-in-Law is sick. Keep coming back for more updates. I am praying for you, Bev. God bless you all. We love you.

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SUNDAY, JANUARY 13, 2008 10:22 PM, CST

Forgot to mention, David is on more meds. His body is low in phosphorus, so now he has to take phosphorus pills twice a day. If it isn't one thing, it is another. We are very thankful that the doctors are on top of all this. Oh well, at least there are meds to take care of what he needs. Thanks for your prayers.

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SUNDAY, JANUARY 13, 2008 07:17 PM, CST

David is still feeling sick today. He did drink a boost breeze (orange flavor) this morning, then had a footlong from Subway, but now is not feeling well. We need him to 'fatten up', but we can't do that if he won't eat! Poor guy. Please keep praying for him to feel better. He is such a trooper, and we hate seeing him like this. We hate this whole thing. I don't like this enemy growing in our son's leg. No one invited this thing to come and reside (and grow!) in our son. This just sucks the big time. But we are waiting to see what God has in store for David. We know that David is in God's hands, and we are looking forward to see what God does in David's life.

Please keep coming back for more updates. We are just happy that we get to be home for the 3 weeks. We do have to go to Oakland Children's Hospital on Jan. 30th for an MRI, then we will stay overnight in the Family House and go to UCSF on the 31st for the pre-op. David also has to have an X-ray on the 31st at UCSF. But other than that one night, we are home for the 3 weeks!!! YAY! We can't tell you how happy that makes David.

Anyway, you all have a good night. Keep reading and posting notes to David. Thank you. God bless you and we love you all.

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SATURDAY, JANUARY 12, 2008 08:17 PM, CST

We got to go home!! They released us about 1:30. David still wasn't feeling up to par, but he still wanted to go home. He had to go to the bathroom before we left, and he had no balance and he fell in the bathroom. Bryon was down the hall talking to some people we met (their daughter has osteosarcoma, and they are from the Reno area), so it was just me trying to help David. He hurt his ankle, and he was afraid he broke it. He was worried that the cancer had weakened the bone in his ankle; but I told him the cancer has not spread to any other bones, so he did not break the ankle. He was in pain for quite some time, but now he is fine. We are home and he is feeling better. His ankle is a little tender and sore, but not swollen or bruised. He is feeling a little neaseous, so I gave him some zofran. This is the hard chemo, so we are still expecting him to feel sick for a while. His blood counts will go down, we just pray they recover in time for surgery. It is in God's hands.

Before we left they brought another baby into David's room. This one is 4 months old. Cute, but we were glad to leave! It seems no one speaks English there; well, none of David's roommates anyway. We don't know what is wrong with that baby, but he did have a nasty cough!! We couldn't get David out of there fast enough.

I just wanted you all to know that we are home. David was happy to take a shower in his own bathroom. He wasn't happy that I needed to change the dressing on his broviac, but that is life. He will get used to it.

He is still really puffy and swollen. His face is so round now. He looks cute with a swollen, round face! But that will pass in time.

You all have a good evening. Keep coming back for more updates. God bless you. Keep the prayers coming. Thanks

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FRIDAY, JANUARY 11, 2008 09:21 PM, PST

We were told that if David feels good, we can go home tomorrow. Right now he is not feeling very good. He did manage to eat a foot-long Subway sub today (thanks Larry and Mush!) around 5:00. That was the highlight of his hospital stay! He is anxious to go home tomorrow. We are hoping and praying that he will feel like it. We never did make it to 5south; now the reason is not enough nurses to take care of the patients! They have empty beds. Oh well, hopefully we will go home tomorrow and it won't matter. David's little roommate went home this evening. So we will have this little room all to ourselves tonight!! David is excited that he will get to be home for 3 whole weeks before surgery!! He hasn't been home for 3 straight weeks (all in a row) since October 12th!! Wow; I just realized that as I wrote it. Like I said a few weeks ago; they told us this would be a roller coaster ride, and I don't like roller coasters so I want off this one!! I want my son off this one. Well, like Chuck said, this is just a chapter in his life. Hopefully it will be a short chapter. We are looking forward to David being NED (No Evidence of Disease) real soon. He will always be 'at risk' with scans and tests for the rest of his life, but as long as he stays NED we will be happy. We are, of course, praying for a long life.

I was reading on the internet today that it takes a year to be able to walk normally (or as close to it as he will get) after the limb-salvage surgery. The surgeon said that David will have a scar basically from groin to ankle (we will ask if that is the case at the pre-op), but David said he will not be embarrassed about it. I am glad, it will be a 'battle wound' for him to wear proudly. It will be the remnants of his battle with cancer; a battle, with God's help, he will WIN!!! So we don't want him to be ashamed of the scar.

Well, I just wanted to post an update on the possibility of David going home tomorrow. Please pray that he will be able to, and he will feel like it. Thanks. Thanks for coming to visit, Larry and Mush! It was really good seeing you. ---------------------- FRIDAY, JANUARY 11, 2008 09:45 AM, PST

Well, today is another day in 'paradise'! How do you like my sick sense of humor? Bev, you should enjoy it!! Anyway, David is still hoping we go home Sunday. Right now he is sleeping, he doesn't feel very good. I made him eat breakfast; just a bowl of froot loops; but he is not feeling well. He just got his dose of Zofran, so hopefully he will feel better soon. He played Bingo with the teenagers again last night, and got cool prizes! He got a Bionicle that he was wanting, a stuffed snake, and a TransFormers puzzle! This is the first time he got prizes for himself and not his sisters! He had fun. It is a little difficult for him to see the prizes beause he plays by closed-circuit television, the game is played in the 4th floor 'teen room'. He can't go down there, so he plays from his room. But he still has a lot of fun. They play 2 regular games of Bingo, and then one game of 'Blackout' where they have to fill in all the numbers. He got the first blackout last night, so he got to pick the first prize!! He was rather excited! We think it is great that they do something special for the teenagers in here.

Please pray the we can go home Sunday~~maybe even tomorrow!! That would be really cool. Right now they are giving him more fluids because his 'output' has to match exactly with his 'input', and so far it isn't. They need him to pee more!! They need to be careful what they ask for! We feel like we have a newborn sometimes, we have to get him up every 2 hours to pee. So we are up every 2 hours (whoever stays with him), just not to eat like a newborn would do. Please pray that he feels better soon. He is just not feeling well today. We know when he isn't feeling well; he is sleeping. He hates sleeping his day away, and he is sleeping! That is an indication that he isn't feeling well, poor baby.

Thanks for visiting and for all your prayers. The newborn roommate (again, from a family that doesn't speak English) goes home this afternoon. He has a low platelet count, and I guess that is under control now. So he gets to go home. We will have the room to ourselves; just not sure for how long. Oh well, maybe we can go home tomorrow. Well, you all take care and I will let you know if we get to go home tomorrow. Tonight is my night to stay with my precious 'baby'. Have a good day, everyone. God bless you.

P.S.~~Bev, that website is beautiful! Thank you for showing it to us. I am sure David will take it to heart in 3 weeks when he has surgery. Thanks again. Love you.

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THURSDAY, JANUARY 10, 2008 10:22 AM, CST

You know, nothing ever goes as we 'plan' it. I guess it is because we are really not the ones ultimately in control. That is so hard when you are living with all the unknowns. God knows everything, and God knows what is best, but it is really hard when things happen that SUCK! Besides just our son having cancer. I asked the nurse at 10:30 last night what time chemo will start. She said the hydration will be done around 11:20,so soon after that the chemo will start. Well, it started at 2:08am!! That was the doxorubician~~the 48 hours drip. Then she didn't start the Cisplatin until 4:00am. The Cisplatin ended at 8:00 this morning; and will be started again at 4:00 tomorrow morning for another 4 hours. Now, I guess that sounds like not a big deal, but we REALLY want to go home on Sunday! We aren't sure now when we will be able to go home. Usually it is 4 days AFTER chemo starts that we are able to go home (not counting start day). So, it looks like we might not be able to go home until Monday. Grrrr. And it is not looking good for being moved to 5south; although God could work that out, too. David's newborn roommate is very cute, and sweet; but he is a newborn! We would rather have a boy similar in age to David, but God has a reason for us being here. We are trying to make the best of it, for David's sake. But Bryon was told that this is the worst room in the whole hospital; and we believe it! It is barely big enough for one person, and there are 2 of us in here! Please pray that if 5south doesn't work out for us that we can have a good attitude about being in this room. Thanks.

The drugs they are giving David are working very well at keeping his queasiness at bay~~he even ate breakfast! He had french toast sticks, hash brown patty, froot loops (with whole milk), and chocolate milk! I forgot to post yesterday that when they weighed him he was back up to 95 pounds! We would still like to get him to 100 (or more) by surgery. The doctors have told us that the more weight he has the better (within reason, of course). But he is so skinny now that they are trying to put the weight on him. He is still 5'6" tall; chemo stunts their growth they say, so we will see if he gets much taller. A friend of mine's husband asked if he is taller than me~~~and since he is he has already reached his goal! What a brat, huh? Everyone in my family is taller than me! Jeremy is almost a whole foot taller than me! Oh well, I can be the 'helpless' female who has to have everyone reach everything for her! Rachel cleaned out my pantry (thanks again, sweetie!), and now there are things I can't reach without a chair! I had things I rarely use on the top shelves, and she put all my baking things up there. I appreciate her doing it so much, I am not complaining! I just had to have her get the Kool-Aid down so I could make David some! Anyway, it will be good when we can see David standing up straight, not leaning on his crutches.

Sorry, I am rambling. I am really tired, didn't get much sleep last night. Tonight is Bryon's turn to sleep here, so he will be tired tomorrow. Anyway, thanks for listening to all my ramblings. Have a good day, and keep coming back for more updates. Thanks for the notes to David. God bless you!

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WEDNESDAY, JANUARY 09, 2008 06:00 PM, CST

We made it! The roads were pretty bad the first summit we had to cross, but then they were ok after that. Our SUV does great! It took over 4 hours to get here, but that is usual. My dear husband likes to 'make up time' once we get to the good roads! Jeremy and Lucy bought us a GPS for Christmas; boy are those things wonderful!! It really helped us when we were in S.F. We obviously know how to get here, but we still use it anyway.

We are not in 5south; yet! We are first on the list to be transferred over as soon as there is an open room. The room we are in now is VERY small, and he is sharing with a very cute one-month-old. Yes, a newborn. I don't anticipate much sleep tonight. Please pray that a room opens up SOON!!

They finally started hydrating him at 5:30. He hydrates for 6 hours, usually longer if shift change comes into play, and then they give him the chemo. The doxorubicin goes for 48 hours straight; the cisplatin goes for 8 hours; 2, 4hour drips 24 hours apart. Then he goes home as soon as he feels ok. These are the 'big guns' that make him the most neaseous, so we will see how long we have to be here. We hope to go home on Sunday, but we will have to wait and see how he feels.

Well, that is all the news for now. Please keep us in your prayers this week; and please pray that a room opens up really soon in 5south. Thank you. God bless you all.

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TUESDAY, JANUARY 08, 2008 10:12 AM, CST

We got the phone call that said we are on for tomorrow. Usually we call the nurses' station on the 5th floor to see when they will have a bed ready for him so we know what time to be there. Well, Connie, Dr. Hastings' nurse, told us to just show up. She said they WILL have a bed for him because he is a priority! We don't know if he will be on 5east or 5south (we are praying for 5south), but we are on for chemo tomorrow. They have to hydrate him for 6 hours before they start the chemo, so we hope to get there early (before noon) so we can get started. The sooner they start the sooner it is over and we can go home! We don't know how long we will be there this time; we don't have to wait for him to 'clear' this chemo. We can leave as soon as he is up to it, and his urine is balanced ok. This treatment is the Doxorubicin/Cisplatin cocktail. The Cisplatin is the one he is allergic to. But the Benadryl helps with the reaction. He just hates the sleeping all the time with the Benadryl. I sleep with the over-the-counter dose of Benadryl, I can only imagine how sleepy he is with the dose they give him at the hospital. But we will do what we have to do; as always.

Well, that is all the news for now. I will for sure post tomorrow and let you know what time we get there and what time they start everything. We will probably leave early; roads might be questionable. There is supposed to be more snow today, so we will see. You all take care and God bless you.

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MONDAY, JANUARY 07, 2008 06:31 PM, CST

The blood draw went just fine. David watched the blood squirt into the tube; he wanted to watch it; and then said, "that's gross". Silly boy. Lucy took it to the lab for me, that is such a help to me. If she didn't do it, I would have to load the toddler I babysit and David (well, I could leave David home) in the car and drive to the other side of town; take Parker out of his car seat; go inside to drop the blood off; put Parker back in his car seat and drive home again. Yeah, I had four children and it really isn't that big of a deal, but I do appreciate Lucy doing it for me. She is a big help, and it is just one less thing on my plate right now.

I hope you all had a great day. David is feeling pretty good today. He doesn't want to go to the hospital on Wednesday, as usual, but he is a good sport about it. We hate having to take him 4 1/2 hours away from home to take him somewhere he REALLY doesn't want to go. But he will die if we don't. His future is uncertain as it is, we have to do all we can to fight! Poor kid is just a homebody; always has been. Even as a toddler he was a homebody. Oh well. He toughs it out and gets through it as best he can.

I thank you all for your notes to him, keep them up! I will post more later. We love you all.

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MONDAY, JANUARY 07, 2008 08:34 AM, CST

The official snowfall total is 16 inches. It is becoming rather icy, but still white, and sparkly, and beautiful! Rachel had a little trouble getting out of her 'parking place' (on the street in front of the house) this morning, but she put her truck in four-wheel drive and was fine. She is learning how to do the 'four-wheel' thing, and learn how to drive stick at the same time. Ok, she has mastered the stick part. She is doing great, she just needs more self-confidence. And all this snow makes her nervous; not that I blame her. But she got to work just fine. Jennifer did, too, but she has had four-wheel drive for 2 years now! I pray them to work in all this snow.

Thank you, again, for your notes to David. And thank you for keeping notes to Bryon and I in a separate e-mail. This site is just for David to read notes to him from people who care about him and love him. Thank you for loving him; even for those of you who don't know him! That makes it so much more special to him~~someone writes to him and loves him without knowing him. It does make an impact on him; don't we all want/need to be loved? Anyway, thanks!

I have to go do the blood draw, just thought I would post a quick note! Hopefully I won't have any problem with the blood draw! Have a good day, and I will post again soon. Thanks for visiting! God bless you!

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SUNDAY, JANUARY 06, 2008 11:46 AM, PST

Well, we now have 10 inches of snow on the ground! It is so beautiful! It is still windy; always is really windy before a storm; so we know more is coming. The sky is gray with patchy sun. There is more snow coming, yay! The kids in the neighborhood are sledding down our street. It is a great street for it, just steep enough.

We bought a treadmill for David for when he is 'learning to walk' again. We really feel that will be good PT for him. We live where it is quite 'hilly' so outside walking will not be good, at first. We are hoping maybe we can write it off on our income tax as a medical expense for him. We want him to be as close to 'normal' as possible when this is all over. We really believe that a few minutes at a low speed on a treadmill will help him. Of course, I plan on using it, too! That is if I can get thin Rachel off of it! But it will be a good investment for David, anyway. We are sure he will benefit from using it. If we can't deduct it, that is ok. Either way, we can or can't, at least we know it will be a good thing for David; and that is the priority! Money is no barrier when it comes to getting him better! Of course, we didn't buy an expensive treadmill, so I guess money is a little bit of a barrier :)

We are so thankful that we aren't traveling over the Sierra's today! Our Honda Pilot does fantastic in the snow, but still. We had to do a little bit of grocery shopping yesterday, and it was snowing as we were doing that. Visibility was pretty bad, but the car did great! But since today is Bryon's birthday we are glad we don't have to leave and go to San Francisco.

That is all the news for now. I will keep you posted if more happens. Have a good day. God bless you all! Thanks for visiting.

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SATURDAY, JANUARY 05, 2008 10:53 AM, CST

Good morning everyone! We have 7 inches of snow on the ground! It is so beautiful. It rained all day yesterday until about 4:00pm. We got 2" of rain, which is 1/4 of our annual precipitation, and twice as much as we normally get for the whole month of January; our wettest month. Around 4:00 it started to snow. When it rains first and then snows it is the best! It accumulates faster that way. David is sad that he can't go out and play in it, tho. He loves having snowball fights~~throwing that snow at his dad! And he loves making snowmen! But I guess it is just not to be this year. He does enjoy looking at the snow, tho. He loves the snow as much as his mom does! We are thankful for our SUV!!

I just want to say 'thank you' to all of you who read our posts (I know they are long sometimes) and post to David. There is a song by Tracy Lawrence that says "You find out who your friends are" and boy is that true. Here are some of the lyrics:Everybody wants to slap your backwants to shake your handwhen you're up on top of that mountainBut let one of those rocks give way then you slide back down look up and see who's around then

{Chorus}You find out who your friends areSomebody's gonna drop everythingRun out and crank up their carHit the gas, get there fastNever stop to think 'what's in it for me?' or 'it's way too far'They just show on up with their big old heartYou find out who your friends areWe have found out who our friends are! And you are on the list! We are so thankful, again, for you taking the time out of your day to read what we write and then drop David a note~~THANK YOU! Bev, he gets a kick out of reading yours! He enjoys reading what you write to him. He usually reads them in the hospital; or he crawls up on my lap (remember, he doesn't weigh much) and reads them. Thank you for the time you take to show you care. These notes to him are special; something 'tangible' that he can go back and read over and over. Phone calls are soon forgotten~he can have these forever. I just can't say thank you enough.

Tomorrow is Bryon's birthday; we might be 'snowed in' for it! We are just thankful we don't have to drive over the mountain to UCSF tomorrow! David is doing better emotionally with the surgery delay. Please keep praying for him as he prepares himself for the surgery. He is very scared. We know we have a long road of recovery ahead of us; but we are moving ahead. It is good to be on the forward path. It still doesn't seem real to us, this kind of thing happens to 'someone else'. Let me tell you, being the 'someone else' SUCKS!!!! But we know that God is in control, and David is in God's hands. Easy to say, hard to live! Keep praying for all of us!

Well, we have things to do. Our garage door opener died this morning, so we need to get another one before the snow starts again~~it is coming! We can watch the storm come over the mountains; very cool to watch. You all have a good day. Please post a note to David; even if it is just 'hi' or just 'I am praying for you'. He so enjoys reading what you write. God Bless you all!

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FRIDAY, JANUARY 04, 2008 10:22 AM, CST

I just want you all to know that David's mouth sores are almost gone! He has no more pain from them; and we never got the braces off!! So I will still call the orthodontist (Marian, we have Dr. D'Ascoli, have had him for all 4 children~~for over 10 years now!) and get the mouth rinse, but so far we are keeping the braces on! I was using a medicine called 'kanka' on his sores, and it worked. Kanka has an antiseptic as well as a numbing agent, so his sores could heal. They looked horrible, they were like blisters all inside his lips and on his gums. Poor baby. But now they are pretty much gone! Praise God!!

I forgot to tell you last night that David will be in the hospital for 7 days after surgery. Then he will be home for 2 weeks before starting chemo again. His leg will be 'weight-bearing' after 6 weeks. So it looks like he will be wearing his brace and using his crutches and wheelchair for at least 2 1/2 more months! He has been off his right leg for 4 months now, and his muscles have really atrophied in that leg. We laugh at him because he has no right butt-cheek! He hasn't used that muscle, either. Of course, he is so skinny, he doesn't have much of a left butt-cheek either! It will be so wonderful when we see our child walking again! I think we take things like walking for granted. He is going to have to learn to walk all over again; it will be different with his 'bionic' knee. But that is down the road a bit.

Thank you so much for all your prayers. We love each and every one of you! Thank you for taking the time to read these updates. Thank you for caring about David. Keep up the prayers, they sure are working! We have had some bumps in the road; and I know we will still have more, but God and your prayers are getting us through this horrible time in our lives. We just can't tell you 'thank you' enough! Happy New Year and God bless you all!!\

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THURSDAY, JANUARY 03, 2008 09:34 PM, CST

We are finally back from the doctor's appointment. Today has been a long day. We left home about 7:15. We got there at 11:15 for his 11:45 appointment; we finally got in to see the doctor at 2:15. Because he is a specialist, and only one of 2 in the area who is; he is VERY busy! But he is worth the wait! Ok, here is the haps. There has been a change of plans. When the dr. saw David's MRI back in Nov, he was prepared for an amputation (he didn't tell us that, tho). The tumor was so big; and still growing at that time; that he didn't see any way to save David's leg. Well, after seeing the MRI that David had done the day after Christmas, and seeing David's knee today, he can do the limb-salvage!! Praise God! The only 'hitch' is that the tumor is still extremely close to the blood vessel. He wants to have David have one more cycle of chemo to shrink the tumor more. He said that he would feel much more comfortable doing it that way. He also said there is less chance of recurrence if he has the one more chemo cycle. He wants the tumor off the blood vessel. He said 'we have that thing on the run' and he wants to make sure that he can get the whole thing in one piece, not have to pick it off the blood vessel. We are so encouraged by the appointment today! So he goes back for more chemo on Jan 9, and surgery is Feb 4. He told us that David's leg is very important to him, and he wants him to keep it. He knows that this extra cycle of chemo throws David off the clinical trial study, but he said, 'I don't care about the study, I care about David's leg'. We are praising God for sending us to this dr. We know we are in the right hospital (or hospitals as the surgery and chemo aren't at the same place). David was a little disappointed that the surgery was delayed; he wants it over with; but he knows this is for the best! Praise God with us for this wonderful news! We have had nothing but bad news for so long; it is fantastic to be getting some good news!

The drive home was long. We finally left the doctor's office at 3:15 and got home at 9:30. We hit rush hour in San Francisco (we HATE SF), hit rush hour in Sacramento, and hit snow in Lake Tahoe area. There were chain requirements, but we have a 4-wheel drive, so we didn't have to chain up! They stopped all the cars and checked tires (ours are snow), and told us to just be careful! Thank God for our wonderful Honda Pilot! But now we are home, and we get to stay home until the Jan 9. I don't have to draw blood until Monday morning. We are thankful, also, that we don't have to go back during the big storm heading our way this weekend. By Wednesday the storm will be past. Anyway, we are really glad to be home. Thank you for your prayers, keep them up! They are working!!

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WEDNESDAY, JANUARY 02, 2008 05:17 PM, CST

Tomorrow is our pre-op with the surgeon. Our appointment is for 11:45 am. I think we have to leave about 7:00. Of course there is a storm coming in tomorrow night; so I guess we will be coming home in the storm. And there is another storm coming this weekend, so we will have to play that by ear.

We will find out tomorrow all the details about the surgery; how long it will last, how long he will be in ICU, how long he will be at UCSF before being transported to Oakland, etc. Please pray for us as we travel to San Francisco.

I will post tomorrow after I get all the information. We also will need to get in touch with a pediatric thoracic surgeon to find out when he gets the lung mets removed. Come back tomorrow and find out the news.

Thank you for your kind notes to David. God bless you all; we love you.

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TUESDAY, JANUARY 01, 2008 08:00 PM, CST

HAPPY NEW YEAR!!!

I hope everyone had a great New Year's Day. We had a quiet day, David has a cold now. Though I did take him to Walmart to buy 'Rock Band' for his Playstation 3. Yesterday I took him to Best Buy so he could look at games he wants to buy. I also took him to Game Stop and he bought 2 games for his XBOX. Some of our family friends came over to see David today~~their children are friends of David. It was good for him to see his friends. He ate a footlong sandwich from Subway~~not sure where he puts it!! We are praying that this is a great year for everyone. We are praying that this year will be a better year for us~~~last year pretty much sucked! We are praying that this year will find our son cancer free! Thank you for your prayers.

Please pray that David shakes his cold. He says his coughing is making his stomach hurt. Please post a greeting to David when you visit; even if you just say 'hi'. Thank you for coming to be updated! Keep coming back! Hugs go you all!