SUNDAY, DECEMBER 30, 2007 11:06 PM, CST

Bryon had to go to church alone today, David was not feeling good. He has mouth sores now, so I have to call the orthodontist tomorrow to see about having his braces removed. We were really hoping to avoid this complication, but no such luck. He is very pale, with huge dark circles under and around his eyes. We were almost detained on Friday because they were thinking that he would have to have a blood transfusion. They told us to just do the blood draw on Monday, like usual, and we will go from there. We will be very surprised if he doesn't need a transfusion now, he looks horrible. His eyes are sunken and he looks like a holocaust survivor. He won't eat because his mouth hurts. The mucusitis is also down his throat, so just swallowing is very painful for him. We were hoping to get him up to 100 pounds by surgery, but unless he heals and eats soon, that isn't going to happen! Please keep praying for our little boy.

Well, I need to go to bed, I just wanted to post a quick update. Thanks for visiting, come back soon.

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FRIDAY, DECEMBER 28, 2007 05:10 PM, CST

We are home!! David's 'meth' level this morning was .06! We got to go home! It snowed the last half of the trip, and it is still snowing here. David is really glad to be home. They weighed him again this morning, and he is down to 93.5 pounds. We gotta get this kid eating and 'beefing up' before surgery! GiGi, we will do more of the ice cream. I will post more later, I need to go now. I just wanted everyone to know we made it home! Come back later.

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THURSDAY, DECEMBER 27, 2007 02:13 PM, CST

We just heard from the doctor. She said that all the preliminary reports show that everything has 'improved'. The CT scan shows that the lung mets have all gotten smaller. The MRI shows that there is a lot of necrosis (death) to the tumor. The bone scan shows that the cancer has NOT spread to any other bones! Praise God! The surgeon doesn't need the echo, they needed it here. Chemo can damage the heart, so they take periodic echos to keep on eye on David's heart. Same with his hearing. So the tests he had yesterday all show good news! YAY!

The dietician was just in here. She said David's weight has stabilized, which is ok. He is not gaining like they would like, but he isn't losing. They brought him some juice boxes made by 'boost', and he instantly doesn't like them. That was before he tried them! He is a typical teen, decides what he likes and doesn't like just by what he THINKS it will taste like! They actually kinda taste like a smoothie. The doctors want him to drink 3 a day; Rachel (the dietician) said she would be happy with 2. So that is what he will do. She said we could compromise in the milk; they want him to drink whole, he likes skim. She said he could have 2%, nothing less. He needs to be drinking and eating calcium fortified stuff~chemo also causes bone density problems. It is just one thing after another! Grrrr!! We want him to have strong bones, so he will be eating and drinking more calcium!

Well, that is all for now. Please join us in praising God for the good reports! Thank you. Happy New Year!

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THURSDAY, DECEMBER 27, 2007 09:53 AM, CST

We just got back from the echo, it went fine. She said we should have the results later today. They just came in and weighed David, he is up to 95.8 pounds!! YAY! He still has 7 more to gain to be at 'pre cancer' weight, but he is on the right track. I guess that high calorie diet (and mom and dad 'forcing' him to eat) has really paid off! Surgery might set him back a few pounds again, but at least he can gain it again! We are happy to see those numbers go up!

His 'meth' level today is .19. He has to be .1 or lower to leave, so it is still looking good for tomorrow. We hope they draw his blood early so we can get the results early. These are the numbers we want to see go down!

Well, I will post when I know the results of all the test he has had the past 2 days. Thanks for visiting and God bless you all. Have a Happy and Blessed New Year!

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WEDNESDAY, DECEMBER 26, 2007 07:06 PM, CST

David had a very busy day today. He left his room at 10:00am, and didn't get back until 3:15pm. He had another MRI, a CT scan, a bone scan and a hearing test. Dr. Hoppe will tell us the results of the MRI, bone scan and CT scan tomorrow. They already told us that so far his hearing is still fine. We have all the "hard copies" of the MRI, bone scan and CT scan; we have to take them to the surgeon next week. Tomorrow David has to have another echo-cardiogram. All these test are in preparation for his surgery on January 7.

He is flushing the Methotrexate quite well, so far. The 24 hour level; which they want below 5; was 4.36. The 30 hour level was 1.61. They will draw in the morning again and we will find out what that is. We are still hoping to go home on Friday; so far so good. David is drinking a lot of Gatorade; the bottles are 2oz more than Fuze! He is one motivated kid to get out of here. Not that I blame him! I want to go home, too. I want my 'sleep number' bed!! And I want MY cooking! David wants me to make spaghetti on Saturday! He is getting tired of the hospital food. The food is good, it just isn't my cooking. But this will be our life for a year or so. Whatever it takes to get my son better! Fortunately, they have pretty good pre-packaged salads.

Well, that is all for today. I will post tomorrow and let you know how the echo goes, and what his 'meth' level is. Thanks for visiting!

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TUESDAY, DECEMBER 25, 2007 08:16 AM, CST

Merry Christmas!!

David is handling this round very well. He started the chemo at 9:30, and he finished around 1:35. Then he had a pretty good night; only got up a couple times to pee, otherwise slept right through. Bryon and I are both in the room with him; me on the window seat bed, and Bryon on the chair bed. The Family House is closed this week, so we need to stay here. Praise God we got 5 South and a private room. We were praying we would get 5 South, thank you Jesus! It is a beautiful day here in Oakland; though I do miss the snow! We will go back to snow, so that will be good. We are going to make the best of being here today. The hospital gave David a $10 gift card in a cute snowman stocking, and Santa came by yesterday. And Santa just came by again as I was writing this!! We got a picture of David (sleeping) with Santa. Santa sat in the chair next to the bed; very cute. And Santa gave David 3 games and a personal CD player. The games are Connect 4, Uno, and Scene it? dvd game. David doesn't know it yet, he is asleep!! We know that this day will be what we make it, and we will make it a good day; despite the fact that we aren't with the other children. They are together, so all is well.

Well, you all have a very Merry Christmas. Thank you for loving David and praying for him. I will post more later.

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MONDAY, DECEMBER 24, 2007 04:22 PM, CST

Here we are again. We made it to the hospital fine. It was snowing in the mountains, but then we got down to the lower elevations and it is sunny here. It is actually a beautiful day here in Oakland; except it is Christmas Eve and should be white, or at least cold!

They started the hydration at 3:10. So, if everything goes as planned (yeah, right!), he should start chemo around 9:30. So it does mean he will be having chemo into Christmas morning. This is a Christmas he will never forget! The 'Chemo Christmas'! But we brought Gatorade for him this time to flush out the Methotrexate. We really want to be home in time for Jennifer's birthday. But, we will just do what we can. They have to stop the IV when he has the tests done on Wednesday, and we are hoping that doing so won't put him behind on the flushing. He has to have the tests, so we will just play that by ear.

The kids had a great Christmas from Bryon's office. They bought some fantastic gifts for the family, and put a large sum of money into David's account. Bryon's sister also sent quite a bit of money for Christmas, so we gave them all gift cards from her. We will do our Christmas with the children sometime later. We really aren't sure if it will happen before or after surgery; but it will happen.

We found out today that we have an appointment with the surgeon on Jan. 3. That will be fun; going to San Francisco for a doctor's appointment and then coming home the same day. Boy, will that be a long day. We have to take all the hard copies of these tests to the surgeon.

David's knee is still continuing to shrink. It is down to 39 1/2cm now. It looks so much smaller to us. It looks great! We can't wait until it is a 'normal' knee again. Well, as normal as it can be! After all, it will be artificial and have a scar down it! But at least, in time, he will be able to use it again. We can't wait to see him walk again. Without the crutches! Then we will be able to retire the wheelchair. That will be really nice.

Well, that is the news for today. Please pray for our other children. It is going to be a weird day tomorrow. I am just glad that they have each other. I will post as more news happens. Oh, David is 'up' to 93 pounds. We are still trying to fatten him up. Merry Christmas everyone.

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SUNDAY, DECEMBER 23, 2007 10:02 PM, CST

Well, the blood draw went fine this morning. We took it to Carson-Tahoe Hospital; they are beginning to know us there. They recognize us, and know we are there to drop off our son's blood. There are just some times and places that you really don't want to be recognized! They will let us know tomorrow morning what his counts are. They told us they don't expect a problem, though. But they test for liver function, as well as his counts. Actually, they test for all kinds of stuff, I just don't know what.

David does NOT want to go back tomorrow, and I don't blame him. He is starting to get really scared about the surgery. We told him to just take one step at a time; and the next step is this next chemo. The surgery is in just a little over 2 weeks, so he is getting a little anxious about it. Not that I blame him one little bit! I had my surgery just 4 months ago, and I was scared, too. And he is just a kid, so he is just really scared. Please remember to pray for him.

Well, I need to go get ready for tomorrow. We want to pack the car as much as we can tonight. Please keep checking back, I will post more tomorrow. God bless all of you. Merry Christmas!

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SATURDAY, DECEMBER 22, 2007 08:20 PM, CST

David is very happy to be home. He is still feeling a little nauseous, but otherwise ok. He doesn't want to go back to the hospital on Monday, but knows he really doesn't have much of a choice. I have to do the blood draw tomorrow and take it to Carson-Tahoe hospital; pray that I have no problem. I am trying to teach Rachel to do it; she watches me; but she isn't ready to do it quite yet. We are hoping the 4 other children can come up for a visit on Christmas day, but we aren't getting our hopes up. That would be a really long day for them~~9 hours of just driving! We will see. I am really going to miss them on Christmas, but it can't be helped. At least they will all be together either way. I feel better knowing that.

Well, I will post tomorrow and let you know how the blood draw went. God bless all of you. Merry Christmas!

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FRIDAY, DECEMBER 21, 2007 11:15 AM, CST

They are on their way home!! Yay! They drew David's blood at 4 a.m. and his level was .05, so they let them go! David will have 2 1/2 days at home before he has to go back. That is better that the 39 hours we had before. Bryon said he had a grin as big as all outdoors on his face (ok, I paraphrased it). But, praise God, they are on their way as I write this. It will take them a while I am sure, this being the Friday before Christmas and all. Please pray them home, I know I am! I am so glad this week is over. I missed them so much. I will have to draw his blood on Sunday and take it to Carson-Tahoe Hospital again, but that is no big deal. Then we will find out Monday morning what time they want us there. I got a call from Children's Hospital yesterday to tell me about all the tests that David has to have on Wednesday, the day after Christmas. Poor guy will have a busy day. He has to have all the pre-op stuff~~MRI, CT scan, bone scan, etc. He hates all those, but he will be fine. I will post more to let you know how he is feeing this weekend. You all have a good day, and thanks for visiting! God bless you all. Merry Christmas! We love you all.

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THURSDAY, DECEMBER 20, 2007 08:44 PM, CST

It looks like David's attempt to drown himself in Fuze has paid off. His "meth" count this morning was .18 . That is a big recovery. The docs think he will be good to go in the morning. They will be doing his blood test early (what ever that means) so they can get the results sooner to get us on the road. David tried again today to ensure that we go home tomorrow by downing another 5 18-oz. bottles of Fuze..A hospital psychologist stopped by to meet David just to check up on him to see how he is doing with all this. She thinks overall he dealing pretty well with it all. She will be dropping by periodically to check on him..A good friend of ours, Dennis Emory came by the hospital for a visit. It was great seeing him again, the last time we saw him was at the 30 yr Wooster High School reunion. He brought David a foot long Turkey sandwich from Subway. Dennis has a new best friend for life! You should have seen David light up when he saw that sandwich! Dennis also gave David a 2 lb. box of Sees Candy! That should help fatten him up (as long as Rachel, our resident chocoholic, doesn't find it!)..David played Hospital Bingo again tonite and won the "CLUE" board game, a chess game for the computer and a Bionicle set..Thanks for all your prayers. Please continue, we need all we can get! We love you all!

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WEDNESDAY, DECEMBER 19, 2007 09:11 PM, CST

David's "meth" count was too high this morning. 24 hours after the start of Methetrexate they want the level to be below 5%. He was at 8.14%. At the 3 day mark he is supposed to be less than .1% . David drank 5 bottles Fuze (18 oz. each) and 1 12 oz. bottle of water today to help flush out the meth. He is really motivated to go home this weekend! His PH level was off so they had to adjust his hydration fluid to counter that and they think that is why he wasn't flushing the meth out. His PH is fine now so they stopped the adjustment.A patient came by today with people from her church. They passed out games and toys to the kids here. David got Rummikub. He's never played it before and he loves it! The chemo hasn't affected his brain, that's for sure!The 9 yr old boy David was sharing the room with went home today and was replaced by a baby. This baby has a very loud 2 yr old brother. This family seems (so far anyway) to be a lot quieter (except the 2 yr old) and more considerate than the last toddler David had to share with. We'll see how it goes as the night progresses.There are a couple new pictures here, check them out.Please pray that David has a significant drop in his meth levels when they check in the morning.Thanks!

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TUESDAY, DECEMBER 18, 2007 04:33 PM, CST

We got to the hospital after fighting thru the rain and snow at 2:30. They put us in 5 East so he is sharing the room with a boy that is about 9 (much better than the 2 year old!). His family is quiet and considerate so David isn't stressing like he was during his last visit to 5 East. We also have the window seat that David likes to sit in during the day. We had to wait for the doctor to come around and see him so they could order the chemo and hydration fluids. By the time they were done messing around, it was 5:30 before the hydration started. Even tho the hydration period "ended" at 11:30, they didn't start his chemo until 1:00am. Shift change is at 11:00 so by the time the nurse gets done with all her stuff it gets really late. He finished his Methetrexate at 5:00am and now we have to wait. They let this "meth" sit in him for 24 hours, then they flush it out as quickly as they can.We got the results of the MRI they took on the 30th. It does show the tumor has grown 1 - 2 cm along all of the borders. Not a real big shock there, we were watching it grow seemingly before our eyes for a while. It also shows that the chemo is doing it's job and killing the tumor. There are NO secondary lesions in the femoral marrow cavity or thigh! It also does not appear to be involving the nerve bundle or blood vessels. More good news is that the tibia and fibula appear to be untouched as well! The knee joint is involved but it hasn't spread south from there. What this all boils down to is that it looks like amputation won't be necessary. David has had some visitors today. Mike Merriweather, the Pittsburgh Steelers linebacker (1987 Steelers MVP) along with Steve Kinney, Tackle for the 1973 and 74 Chicago Bears, came and gave autographs. Also, an animator from PIXAR came and drew a picture of Crush (the surfer dude turtle from Finding Nemo) for David. He also drew Rex (from Toy Story) for Lucy. They gave David a dvd of Ratatouille and a stuffed alien Stu from a short Pixar movie called Lifted.For now we are just sitting around waiting for the leucavorin to begin, and then we will be waiting for the chemo to flush. We are hoping to come home sometime on Friday.Thank you for all of your prayers and support, it is working!

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MONDAY, DECEMBER 17, 2007 10:03 AM, CST

Well, Bryon, David, and Lucy just left for Oakland. The call came in that David's ANC is 270; so he is good to go. But his white count is only 10~~~way low! He is not rebounding as fast as he did last time he had the doxorubicin/cisplatin chemo. But at least he is on track for Methotrexate today. Hopefully he will clear fast (but not too fast) and be able to come home on Friday. Then we have to go back on Dec. 24 for the last treatment before surgery. I decided I am not going to stay home again; not for a LONG time. This is too hard on me to not be there with my son. David is my priority, and I am just going to go from now on. The parents of the little boy I babysit will just have to understand. I will miss the money, but that will just have to work itself out. I NEED to be with David, and this is killing me that I am not with him now. Please pray that this week goes by fast! I will just keep myself busy, as usual. Please pray that I have no problems going from now on. I will post when I know more about what is going on; or maybe I will just have Bryon post while he is at the hospital. Have a good day, and keep coming back. Thank you for visiting. God bless all of you.

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FRIDAY, DECEMBER 14, 2007 09:04 PM, CST

Well, I am finally able to post today. The blood draw yesterday went just fine. I had no problem with it, yay! It is still so overwhelming, but it is getting better.

The party last night was fun. It was good to have all 7 of us together supporting David. He got a Walmart gift card from Mrs. Santa.Today we had to go to Walmart to get David some pants~~they don't make them 'skinny' enough for him~~so he wanted to use his gift card. He bought a game for his WII system. He also needed a wallet to carry his ID, and he needed a belt (to hold up his pants!). We weren't really comfortable taking him out, it is really cold here; highs in the mid 30's; but he needed to pick out his wallet. It was kinda good for him to get out in the fresh air.

His blood counts are on the rebound, his ANC is now 200. I will draw blood on Sunday and take it to Carson-Tahoe Hospital (the hospital David was born in) and they will call me early Monday morning. But they are sure his counts will be high enough for him to have chemo on Monday. But, as usual, they have to hydrate him for 6 hours before chemo starts. Lucy is going with Bryon this time, I am unable to go. I need to stay home and babysit the little boy I take care of, we need the money. My heart will be in Oakland with Bryon and David, but I gotta do what I gotta do. I will be going the next week, tho.

Well, I need to go. Please keep praying for David and us. God bless you all, and keep coming back. Merry Christmas!

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THURSDAY, DECEMBER 13, 2007 08:17 AM, CST

Hello, everyone. I tried to update last night, but CaringBridge was doing it's maintenance, so I couldn't post anything. So I will do it now.

We had a GREAT dinner last night. Bryon's co-workers from Records and Technology brought us a fantastic dinner! It was so yummy. I had leftovers planned, they brought a much better dinner. Did I say it was yummy? And there was tons of food! All 7 of us ate our fill and there was still a lot left over. I sent some home with Jeremy and Lucy, and there is still enough for a couple of meals for the 5 of us! And, boy, was it yummy! We really appreciated their reaching out to us that way. It was a wonderful surprise!

David is feeling ok. It is really cold here, so he spends his time downstairs in front of the fire. It is too cold upstairs, so he does his school work down here instead of the schoolroom. But I enjoy having him down here with me. We had to go to the DMV to get him an ID card; they linked it up with his handicapped placards that we got. Now if someone thinks we are using the placards illegally, we have his ID. His name is on the paperwork that goes with the placards. I hated taking him out in the cold with his counts so low, but I didn't have much choice.

Well, I need to go get ready to draw his blood. I will post later and let you know how that went. I just pray that it goes ok.

Oh, we are going to a Pediatric Hematology/Oncology Christmas party tonight. We get to meet other parents who know what we are going through. Maybe their children don't have the exact same cancer as David, but they still know what it is like to have a child with cancer. They are the only ones who can really relate to us, and encourage us. We are looking forward to it. Gotta go, will post later. God bless each and every one of you. Merry Christmas!

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TUESDAY, DECEMBER 11, 2007 02:47 PM, CST

Hello, everyone. Well, the orthodontist appointment went well. David has a little tenderness in his mouth, but no sores to worry about! Praise God for that. We were happy to find that out. David's teeth are looking good, but we are just in a 'hold' pattern with them right now. We aren't really doing any moving of them now; we will worry about that later.

I got a call from Children's Hospital about his blood counts~~they have dropped quite a lot. If you remember, on Friday his ANC was 930; today it is 120. He has to be >250 to have his next chemo; we really don't want him to be delayed, again. Please pray that the counts go way up by next Sunday. Bryon is still awaiting a call from the surgeon about David's MRI results, I will post when we find out what those are.

We would like to thank everyone who has deposited money into David's account. We don't know who you are; but you know who you are, and so does God. We pray that each one of you are extra blessed for blessing David and us as you have done. You have no idea how much we appreciate your blessing us with the financial help. Thank you from the bottom of our hearts! Thank you for reaching out and loving us. There really aren't words to express how thankful we are, just know we are very thankful.

I will write again when I know more. Please keep coming back and signing the guestbook. Have a good day, and God bless you all.

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MONDAY, DECEMBER 10, 2007 09:44 AM, CST

Today is another day. I had a little bit of trouble with the blood draw, but it eventually worked and I was able to get the blood. Praise God. I was praying that we wouldn't have to make another trip to Reno today. David is not having any more chest pains, so we are very happy about that. He is still having a little trouble with his stomach, but the pains come and go, so he says it is bearable. When he goes to the hospital again we will talk to the doctors more about that. He is on prilosec, but it doesn't seem to be working well enough. I still have his zofran and ativan (both anti-nausea meds), but he hates taking pills. If the pain gets too bad, I make him take the pills anyway. The ativan makes him sleepy, so he really fights taking that pill. Oh well, someday this will all just be a horrible memory.

David is getting caught up with his school work now. It is a good thing he is homeschooled, because he is unable to go to school now, anyway. He would be doing independent study at this point anyway, so I am glad we don't have to make that adjustment, too. He got a little 'behind' when he was in the hospital, but now he is doing the work and getting all caught up. We weren't really too worried about it, he is already a year ahead. His education is very important to us, we just aren't going to stress out about it right now. It is a good thing he is a year ahead, so he can afford to 'miss' this year if he has to. But he won't have to.

Well, that is all that is happening now. He has an orthodontist appointment tomorrow; if he has mouth sores he has to have his braces removed. We are trying to avoid that. He has gold braces; coated in 24 karat gold; and the orthodontist told us that the gold has less problems of a reaction or irritation. So we are hoping that is true in David's case. The risk of infection is high if he keeps his braces with mouth sores. Pray he doesn't get any mouth sores. I will post tomorrow after the orthodontist appointment and let y'all know what is going on there.

Have a good day, everyone. I need to go get my chores done. Keep up the prayers and the messages to David. God bless you all. Thanks for visiting.

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SATURDAY, DECEMBER 08, 2007 07:51 PM, CST

Because we have had requests, I am enclosing the number for the account that has been set up to help pay for travel expenses and David's care. Donations can be made in David's name at any US Bank, account number 153752591823. Thank you.

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SATURDAY, DECEMBER 08, 2007 06:51 PM, CST

Praise God, David had no chest pains today. But he did have some pain in the back of his head; don't know what is causing that! But it wasn't too bad, and he got through it.

Bryon and I donated blood today. We wish we could get a 'credit' for our donations so that when David needs blood he could get it for free! Too bad it doesn't work that way. But we still donate, it is a good thing to do.

Well, that is all for today, a rather boring day. Right now Rachel is playing Lord of the Rings Monopoly with David. My children do enjoy board games. Anyway, I will post more soon. Thanks for visiting and praying for us. Keep checking back.

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FRIDAY, DECEMBER 07, 2007 03:41 PM, CST

Well, we got the results of his blood count. The counts really took a dive! His ANC was 1800 on Tuesday, and today they are 930. So, as you can see, they dropped significantly! When they get below 500 he is at risk of infection. He can't have the next chemo treatment (Methotrexate) if his counts are below 250. We will draw his blood 3 more times before he goes back for chemo again. Last time, if you remember, he was delayed for 5 days because of his counts. We will see what happens this time.

Thank you all for your prayers. So far today he hasn't had any pain. The nurse told us that the doctor will be in Reno on Monday, so if he is still having pains we are to bring him in. The doctors only come to Reno a couple of times a week, the rest of the time they are in Children's Hospital. So we will see what happens on Monday. We are keeping a watch on his temperature, and he hasn't had a fever yet. They said that is a good sign.

That is all the news for today. Thanks for checking up on him. Thank you for praying and caring and loving him and us. We will keep in touch.

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THURSDAY, DECEMBER 06, 2007 05:32 PM, CST

Well, praise God, I had no problem with drawing blood today!! Yay! Today is our son and daughter-in-law's anniversary. They have been married 4 years already!! We can hardly believe it. Lucy usually takes the blood to the lab for me; but today she slept in~~~I guess I can't blame her. So I got to take David's blood to the lab today. I really appreciate it that Lucy usually does it; it is a huge help to me. I am so glad that I had no problem today.

David is not feeling that good today. He is having a lot of pains in his stomach and chest; and I have read that it could be his 'mouth sores' moving down his digestive system. Those sores can do that. Poor baby. It just seems like it doesn't get any better. But some good news. I measured his knee today, and it is now only 43cm. It was 45 1/2cm a little over a week ago. So the tumor is dying and shrinking. That is the goal of chemo! Praise God for that. We will find out tomorrow what his blood counts are doing. We hope they aren't dropping too low.

Well, that is all the news for now. Please keep praying for David and his pain. He is on prilosec for the heartburn, but it doesn't help the sores. Please pray that he pain goes away. This last chemo drug combo causes the sores, and we want them to heal and not give him any more pain. It is hard, as his parents, to watch him in pain and not be able to help. We hate that helpless feeling. I will post more when we find out his blood count. Thanks for reading and signing his guestbook; he reads them all. Keep coming back.

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WEDNESDAY, DECEMBER 05, 2007 09:19 PM, CST

Just a quick note to say I will post tomorrow after I do the blood draw on David. Prayerfully, I will have no problem! We got a new shipment of all the broviac care supplies yesterday, so I have enough of the supplies to care for the broviac for a month or so. Anyway, look for the post tomorrow!

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TUESDAY, DECEMBER 04, 2007 10:01 AM, CST

We are so glad to be home. David is finally feeling better. He has been feeling very nauseous the past few days, and today he is feeling much better. We are still trying to stimulate his appetite, but he still doesn't have much of one. He is still down to only 94 pounds. We had to make a trip to Reno yesterday; I couldn't get blood out of his broviac again. Well, when we got there the blood flowed freely, of course! We took that trip for nothing. But the doctor and nurse told us that we did the right thing; better safe than sorry. I have to draw blood again on Thursday, so we are hoping there are no problems. I am having no problems flushing the broviac, so that is good. So, that is the latest on the Koury cancer front! Please keep the prayers coming. Thank you for visiting.

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SATURDAY, DECEMBER 01, 2007 07:30 AM, CST

We are home!! They let us loose after David's MRI. The MRI took about 2 hours, Rachel was in there with him. We got home around 10:00 p.m. It feels so good to be home. It is so much colder here than in Oakland, but I love the cold. The trip home was ok. David was sick, but this time he didn't throw up, yay!! He is glad to be home; we all are. We won't know the results of the MRI until Wednesday at the earliest. We have to report back to the hospital on December 17 if David's blood counts are high enough. I have to get back into the routine of flushing his broviac every day, and drawing his blood twice a week. But that will be fine, it is just good to be home. RIght now I am sitting in front of the fire drinking coffee, and feeling so much more relaxed after a good night's sleep in my own bed!! Well, gotta go for now. I will still update on the day-to-day as I can. Keep checking for more 'breaking news'!

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FRIDAY, NOVEMBER 30, 2007 09:09 AM, CST

Ok, here is the latest. The doctor came and spoke to us last night, and he said he looked at the results of the CT scan. David's kidneys are clear! Praise God! And there are no new lesions on his lungs, just the original 5. One appears to have maybe gotten a little larger, but the other 4 have gotten smaller. The thoracic surgeon does believe they can be removed. However, they won't be able to "cherry pick" them out with a scope because of the location of one of them. They will need to open him up to do it, and the preliminary impression is that they will need to remove the lobe to remove the tumor. We are praying that won't be necessary. He goes for him MRI this afternoon. He had a good night last night; Rachel stayed with him so Bryon and I could go to the Family House and spend some time together. Being at the hospital 24 hours a day is very stressful; and we don't have any "alone" time together; so we really appreciated Rachel staying with David. I will post more as I know more. Keep checking back!

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THURSDAY, NOVEMBER 29, 2007 02:35 PM, CST

Well, David had his CT scan today. They made him drink some radioactive "kool-aid" so his kidneys would glow! There was/is a spot on his left kidney that we aren't sure about. It was there last month, which is why he had to have 2 kidney scans. It also "lit up" in the bone scan, so we had the CT scan today to take a look at it. The CT scan was also to see about the lesions on his lungs. We found out there are 5 lesions on the lungs; basically 4 lesions on one lung, and 1 on the other. The doctor came in and said they don't have the results back on that yet. David is still scheduled for an MRI tomorrow; and he is scared. He doesn't like having all the tests done, but knows he has to. Right now he is napping; something else he hates to do. He hates it when he misses a day (or any time) sleeping. We told him there is nothing here worth staying awake for! Time will pass faster for him if he is asleep; but he still hates it anyway. He is a silly boy! Anyway, I will keep you all posted!

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WEDNESDAY, NOVEMBER 28, 2007 06:38 PM, CST

Well, David is undergoing chemo as I write this. He is receiving Doxorubicin and Cisplatin again. This is the same "cocktail" that made him so sick last month. We have requested that the benadryl/reglan drugs be given only as he needs them; they make him sleep too much. He still takes zofran and ativan for nausea, and he is doing pretty good on just those two. He is also still on prilosec/prevacid for his tummy. We hope to be home maybe by Saturday if he continues to handle the chemo as well as he is now. That would be so great! He was supposed to have a CT scan today~~~didn't happen. He has to have the MRI on Friday, so he might just have the CT scan then, too. He is still on his high calorie diet, and his weight is going up and down. But at least it is going up faster than it is going down. Our daughter, Rachel, is here to help us this week. We found out last week when our daughter-in-law, Lucy, was here that the third person really helps! We are really thankful for the extra hands. Well, that is all that is happening here today. Keep coming back to learn more. Thanks for visiting!!

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TUESDAY, NOVEMBER 27, 2007 05:37 PM, CST

Well, we are back in Children's Hospital. He is hydrating now, and will start chemo soon. We left early this morning, and went to San Francisco to meet with the surgeon. He was rather surprised that David's knee had grown so much. He is pretty sure it is because the tumor is dying and releasing blood and fluid into the tissue, but he is not totally sure. He said he needs another MRI this week so he can better assess the situation. If the tumor is just dying, we can go for limb-salvage. If the tumor is growing and involving the blood vessels, we would be better off with an amputation. He wants the MRI to help prepare us; the family; and himself if he needs to amputate. That can't be an easy thing for a doctor to do~~~cut the leg off of a 13-year-old!! So just keep praying that God's will will be done, and we can accept whatever that is. Also, please continue to pray for a miracle and 100% healing of David. Thank you, and keep reading! Thanks, Bev, for all your posts!! Keep them coming! God bless you all!

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SUNDAY, NOVEMBER 25, 2007 09:50 PM, CST

We got to go home!!! YAY!! He had to have a level of .05; lower than the .1 because he was classified as "delayed" clearing last time. Well, his level is .05!!! He is so happy!! We don't get to stay home long, we have to leave Tues. morning at 6 a.m. to go to San Francisco to meet with the doctor. Then from there we go to Children's Hospital where they will start the hydration on David. That takes 6 hours; then they start chemo. We hope to go home on Sunday. This time we can go home as soon as David is up to it. The last time he had this round; Doxirubicin and Cisplatin; he was pretty sick. He had chemo on Saturday, and we came home the following Thursday; and he threw up all day that day, including on the way home! Hopefully he will feel well enough to come home on Sunday. But at least we are home for a little while. I will need to spend the next day doing laundry and packing to leave again. But it sure feels good to be home! I will post more later.

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SATURDAY, NOVEMBER 24, 2007 03:15 PM, CST

Ok, here is what is happening. David's Methotrexate level in his blood has to be <.1 for us to go home. This morning his level was .14. So, the doctor is confident that it will be below the .1 by tomorrow. They draw his blood in the morning, around 6, and we find out as soon as they know. We are hoping that we will be able to go home tomorrow. I will keep the site posted, and you will know as soon as we do!! Have a good day.

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FRIDAY, NOVEMBER 23, 2007 10:55 PM, CST

I hope everyone had a happy Thanksgiving. Our was ok, for being in the hospital. We had them cut back on two of the anti-nausea meds they give David so he wouldn't sleep through the day. He gets very upset when he "misses" a day. We try to explain to him that the days he "misses" in here are not a big deal. But he still hates it. He hates being confused, which happens a lot with this chemo and the meds. He is just not a happy camper in this place, not that I blame him!! We are waiting again for the Methotrexate to clear out of his system. They draw blood in the morning, and we will know what the chances of going home are later in the morning. We aren't getting our hopes up, that is for sure!! If nothing else, we hope to go home on Sunday at the latest. We have to come back on Tuesday, as we have an appointment with the surgeon at 11:00 a.m. Then we will come here and they will start hydrating David for 6 hours before he starts chemo, again! But this will be the last one for a few weeks. Then he will have 2 more treatments before surgery. That is where we are now. I will post when I know whether or not we get to go home. Thanks for reading, and keep it up!

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THURSDAY, NOVEMBER 22, 2007 07:48 AM, CST

Happy Thanksgiving!! Well, we are back in a private room again; praise God! We were moved yesterday afternoon, and it is good to be back. These private rooms have a nice window seat/bed and it helps boost David's morale to be able to sit in the window and look outside. So we are very thankful for the window again. David was given his next dose of Methotrexate at 7:00 last night, and it finished around 11:00. He has been sleeping it off, again, as the anti nausea meds make him very sleepy. But that beats feeling sick. I just didn't want him to sleep all day Thanksgiving, but there is nothing I can do about that. We are going to have Thanksgiving with the other children when we get home; sometime, so this will be just another day this year. Our Thanksgiving Day will be postponed, so we can pig-out another day!! The surgeon wants to do the limb-salvage on David, not the amputation that David wants. We had to have more x-rays yesterday, and he will have another MRI and CT scan before surgery, and we won't have a final recommendation until then. We will see what happens as time goes on. David is out of pain, and the doctor thinks that is because the tumor is shrinking. But that is also why the knee is swelling. He said as the tumor dies it bleeds and releases fluid into the surrounding tissue. Please keep praying for a miracle of complete healing for David. Keep checking back!



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TUESDAY, NOVEMBER 20, 2007 05:52 PM, CST

David's roommate is 2 1/2, not 3. Well, close enough! He has leukemia, and he is a cutie. Bryon is on his way home from UCSF and we will talk about what he found out later. I will post what we know as soon as I can. Keep checking!!

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TUESDAY, NOVEMBER 20, 2007 03:25 PM, CST

Here is the latest on a theory they have. They think that the reason it took David so long to clear the Methotrexate out of his system could be the prevacid and/or prilosec he is given for his tummy is preventing him from clearing!! Grrrr! He needs the meds, but it is counterproductive. We end up just trading one problem for another one!! Again, I just wish this was over!

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TUESDAY, NOVEMBER 20, 2007 01:25 PM, CST

David is still on his high calorie diet; he now weighs less than 91 pounds. He won't start his chemo as soon as we had hoped, he is still trying to flush the remainder of the last round of Methotrexate out. Hopefully he will flush this round out sooner; once we get it started!! This is just really frustrating, being that is Thanksgiving and all. Oh well, what can we do? We are just praying that things start going better really soon; and we can get a private room back!! God is still in control, so we are just trying to hold onto the fact that He knows best. Bryon called from UCSF; Dr. O'Donnell is running 2 hours behind!!!! YIKES!! This has just been a bad day all around, so far. They did say it would be a roller-coaster ride!!! Man, they were NOT kidding! But I don't like roller-coasters, so I want off this one!!! I can't wait until my baby is cancer-free!! Sorry, I just needed to vent.

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TUESDAY, NOVEMBER 20, 2007 11:59 AM, CST

Well, we are still here, obviously. David got a real disappointment this morning. They moved us from our private room to a room with a roommate. That wouldn't be so bad, except they put us in a room with a 3-year-old!! I hope David doesn't get sick over here, he is still on the 5th floor, but not in the immunocompromised wing. His counts are so high (good news) that he doesn't "need" that wing anymore (bad news) and another child needs it. We are just disappointed because we have to stay here through Thanksgiving, and now we don't even have a private room. Or even a room with a teenage boy for him to talk to. Oh well, we are trying to make the best of it. We will find out, soon I hope, when he starts chemo. Bryon is on his way to UCSF right now to talk to the surgeon. A major praise is that David is no longer in pain! The swelling is getting bigger (his knee was 42cm on Nov 17, and it was 43cm on Nov 19) and the doctors don't know why. It should be getting smaller, not bigger. His oncologist has ordered more tests and scans, so we will see what they reveal. That is all that is happening for now. I will continue to post as more info comes in. Keep checking back (you too, Bev).

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MONDAY, NOVEMBER 19, 2007 02:08 PM, CST

Well, we were not able to go home. David's level was low enough, but he took so long to clear that they want to continue with the leucavorin and the hydration. He is given sodium bicarbonate to protect his bladder and kidneys from the chemo, and he needs to still receive that now. The protocol says he must be at certain levels at specific intervals, and he failed. Basically, he took too long to clear the 'meth' out of his system. So, he will start chemo again tomorrow. We are supposed to meet with the surgeon tomorrow, but it might just be Bryon going and I will stay with David. He doesn't want to be left alone, so we can't both go to San Francisco tomorrow. But Bryon can just put me on speaker phone if need be. It will all work out, I just don't know how. But the nurses and doctors and everyone here are awesome. I know we are where God wants us to be. David is getting wonderful care, and that is the main thing. He is disappointed that he can't go home, but he will be fine. I will post more as more info comes in. Keep coming back!

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SUNDAY, NOVEMBER 18, 2007 09:31 PM, PST

Well, we are still here. David's level was .12. So we are here another night. We hope to go home tomorrow, just to turn around and come back the next day. We will see~~~~maybe we will just stay here. David's siblings all came here to see him; and Jeremy needed to pick up Lucy in case we didn't get to come home; and that made David really happy. Now he isn't as upset about staying another night here. He saw his siblings, and he is happier, so that is a good thing. Please stay tuned, maybe we will go home tomorrow, maybe we won't. Keep coming back for more updates!

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SUNDAY, NOVEMBER 18, 2007 01:54 PM, PST

Well, it is Sunday, and we are still here. David's level was .16 this morning; so they drew blood again about 11:00. Then it came back .13. He has to have a level of .1 or lower to leave. They are going to draw blood again at 5:00 and check it again. We are praying that he will be .1 or lower so we can come home. Of course, we will only be home for 2 nights, but that is better than nothing. We need to come back here Tuesday for more chemo. We don't know if this is an indication of how long it is always going to take for him to flush the "meth" out of his system or what. I guess we will just have to wait and see. Our favorite nurse, Chuck, told us that we are to expect nothing when it comes to chemo. But that is really hard to do when you have a child who just wants to go home!! Well, that is the news for now. I will post more as we know more. Please keep coming back for more updates.

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FRIDAY, NOVEMBER 16, 2007 02:02 PM, PST

Well, there has been a change in plans. We do not have to go to UCSF on Monday, they will do the X-rays on Tuesday when we are there. That is an answer to prayer. See, I said it was gonna work out! We are pretty sure we are going home tomorrow; his methotrexate level today is at .9!! Yay! So the leucavorin is flushing the "meth" out of his system. He doesn't want to stay until tomorrow, but he is glad there is a light at the end of the tunnel for this stay. Of course, he doesn't want to come back on Tuesday, but knows he has to. Keep coming back for more updates!!

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FRIDAY, NOVEMBER 16, 2007 10:22 AM, CST

Today is Nov. 16, and we are still here. David just wants to go home. We can't go home until there is only .1 level of Methotrexate in his blood. Yesterday there was 11. We are still hoping to go home tomorrow. We just found out that the Doctor in San Francisco (David's surgeon) wants to meet with us on Tues. Nov. 20 at 1:00. Then we wil come here for more chemo. But we also have to have more X-rays done on Monday, Nov. 19. Now, the bad part of that is the X-rays need to be done at UCSF; 4 1/2 hours from home! Then we have to go back to UCSF on Tues. to meet with the doctor! We aren't sure yet how that is going to work, but somehow it will!! David does NOT want to be here for Thanksgiving, but we have no choice! So we will be away from the rest of our children on Thanksgiving, which is kinda sad. But it is only one year, and it will all work out in the end. David has also been put on a high calorie, high fat diet because he only weighs about 94 pounds (he is 5'6" tall). Must be nice to be told to eat lots of milkshakes, butter, and high calorie foods. Hope it helps fatten him up!! Keep coming back for more updates! Thanks for visiting.

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THURSDAY, NOVEMBER 15, 2007 02:03 PM, PST

David is on his second round of chemo. On October 20 he started chemo. He had doxorubicin and cisplatin, and did ok. He got a skin reaction from the cisplatin. Not a rash, just red spots. Then we got to go home on the 25th, but that was the day David threw up all day. He even threw up on the way home. Then we were supposed to come back to the hospital on Nov.9, but his ANC was too low. His ANC is supposed to be >250, and his was 160. So we had to wait a few days. He started his second round on Nov. 13. This round was Methotrexate. That was only a 4 hour drip, and now he is being given Leukavorian to help flush out the Methotrexate. We hope to go home on the 17th, but we wil be back here on the 20th for round 3!