Tuesday, March 31, 2009

Good evening. It was a beautiful day today. It was cloudy and breezy and cool. The sunset was absolutely gorgeous.

David did really good in the pool today. He tries really hard, I am so proud of him. He is such a wonderful kid, and I am glad he is mine. He has been eating fantastic! Yesterday I made him a 'taco hamburger' which is a hamburger bun with taco meat and cheese inside. He ate 4 of them!! Today he only ate 2. But he is eating quite well, and we are happy about that. For breakfast he has been eating an egg, bacon, and cheese on a toasted english muffin. He would have NEVER eaten like this a year ago. It does my 'mother heart' good to see him eat.

He is not looking forward to going to San Francisco and Oakland; not that I blame him. I am getting 'scanxiety' big time!! I know David is in God's hands, but that doesn't take away the fear I have. Please pray that David's scans come back clear!! Thank you.

Please continue to pray for Sammie. They have decided that her little body just can't take any more chemo. They are in the hospital fighting some infection and other problems, and they just want to go home and surround Sammie with friends and family. Please, please pray for that family. Thank you.

Well, I need to go get ready for tomorrow, it is going to be a busy day. I have my nail appointment (my girls are paying for my nails), then I have to rush home and get David to the orthodontist, then we come home so David can have breakfast, then we go to PT, then I have to finish the laundry and cleaning before we leave on Thursday. We will be leaving bright and early~~well, it might not be bright! But it will be early; we leave at 5:30am!! Hopefully we will get a good night's sleep tomorrow night.

Thank you for visiting and checking in and up on us. Please continue to pray for our children in this battle; Sammie, Shane, Muriel, Meghan, Nick, Sonya, Mattie, Rachel, and others (God knows their names). Thank you. God bless you. We love you.

Kristi and the Koury Klan

The National Cancer Institute’s (NCI) federal budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.

Monday, March 30, 2009

Good evening. I put the Golden Gate Bridge as David's background because we will be in San Francisco on Thursday.

David did pretty good in PT today. He had to suck on a peppermint while he was doing the elliptical, but otherwise did ok. I am trying not to give him the Zofran unless absolutely necessary. He will be getting it on Thursday~~don't want any carsickness!! But I am trying to have him sorta tough it out at PT. He works really hard, as usual, at PT. He is such a trooper. Tomorrow he goes to the pool! He doesn't like the work he has to do in the pool, but he does enjoy being in the pool.

A year ago tonight he finally got out of the PICU and put in a regular room. Sometimes I can't believe it has been a year; other times I can't believe it has been ONLY a year. You osteo families know exactly what I mean by that. I just don't want my baby to have to go through that again. That is why we are praying so hard for clear scans on Friday. It is so scary to me that David could have cancer growing in his lungs and we wouldn't even know it without the scans!! Grrr. Please pray for him and clear scans. Thanks.

I hate our insurance company. They denied claims last year because David exceeded his pre-authorization for hospital stays. Now; that is because they only pre-authorized a 4 day stay for a 5 day chemo infusion!! Hello! A 5 day infusion means 6-7 days in the hospital. Then we found out that they will only pay for 6 Zofran pills every 23 days!! Give me a break! I guess he can only get nauseous 6 times in 23 days. No wonder this cancer disaster has caused such devastation in our finances!! *sigh* But what are we gonna do? Of course we pay a LOT out of pocket, it is not fair for David to suffer because the insurance company won't pay for medicine he needs. That is why I have asked, over and over, for you to pray for our finances. Being minus one income and expenses greatly multiplied~~ you get the picture.

Thank you for visiting and checking in and up on David. Thank you for your prayers. Have a good night and sleep tight. God bless you all. We love you.

Kristi and the Koury Klan

Even with insurance coverage, a family will have out-of pocket expenses of about $40,000 per year, not including travel.

Saturday, March 28, 2009

David had a pretty good day yesterday. He went to PT, and he didn't get nauseous!! And, no, I did NOT give him Zofran. We have discovered that he does get nauseous when he gets too hot. But he is like his older sister and his mom; the same thing happens to us. We just can't handle the heat. Jennifer used to throw up EVERY night in the summer when she was 17-21 months old. Our apartment in Southern California was HOT, and at night it didn't cool off. Our neighbors and friends couldn't believe she threw up EVERY night; until they would come over and poor Jeremy would come out of the room telling us that Jennifer threw up again. We had to bathe her and change the bedding in her crib every night! And Rachel was just a newborn at the time (the girls are 3 days shy of 15 months apart). We moved when Jennifer was 28 months old. So we just figure that David isn't able to handle the heat, either. But we are just thankful that he did good yesterday. He also sucked on some peppermint 'Breath Savers' and that helped, too. He also did a new machine for his quads~~~it was hard, but he did it!! Linda was looking at his legs as he was doing one of the exercises, and she discovered why he is so weak. When you know what you are looking for, it is very obvious where some muscle was removed from his leg. Linda said it is a very important muscle, so he will have to work hard to compensate for it not being there. And he does work hard!. So he did really good yesterday.

Next week is going to be a busy week. David has PT in the office on Monday and Wednesday; PT in the pool on Tuesday; an orthodontist appointment on Wednesday before PT; and then we leave early Thursday morning for the Bay Area. Rachel is coming with us, so please pray for Jennifer staying at the house alone. She does a good job watching the house and the animals for us. Also, please pray that David's scans come back clear. We have some plans for this summer, and we will NOT be doing them if his scans don't come back clear.

Please continue to pray for members of our osteo family who are having a hard time with relapses; Sammie, Shane, and Nick. I read on another site that another child, named Maddie, died a couple weeks ago. That makes 9 so far this year. Please pray for all of our osteo family~~~even if I haven't said their names. We are all in this battle together, and we need your prayers. Thank you.

David and Rachel are going to go to the pool again today. Rachel said he does a lot of exercise as well as fun in the pool. She said he is a better swimmer than she is. Well, he used to spend a lot of time in our backyard pool; before cancer came, uninvited, into our lives. He loves the water, so I am not surprised. I am sure they will have a good time.

Thank you for all your prayers. Thank you for stopping by and checking in on us. Have a great day. God bless you all. We love you.

Kristi and the Koury Klan

Several childhood cancers continue to have a very poor prognosis, including: brain stem tumors, metastatic sarcomas (that is what David has), relapsed acute lymphoblastic leukemia, and relapsed non-Hodgkin's lymphoma.

Wednesday, March 25, 2009

Good evening. Today was a pretty good day. I have not been feeling too good, so I have been kinda laying low the past few days. Yes, I took David to PT at the pool yesterday, and PT on Monday. Even when mom is sick, life still goes on! I don't have the luxury of being sick and staying in bed. But I haven't been doing much else. Well, I did do laundry the last two days, that is something that still needs to be done!! Anyway, today was a pretty good day. Rachel had a pretty good birthday. I can't believe my children are getting so old! *sigh* The next birthday is David's; and his is on Easter this year! So he will share his birthday with the celebration of Christ's resurrection.

David did very well in the pool yesterday, as usual. I am so happy to see him enjoy it so much. There is work involved, of course, but he just enjoys being in the water. And he didn't get nauseous!! Yay! I did NOT give him Zofran, and he did ok. He is having a little bit of bowel problems, please pray for him. Ever since his bowel resection things haven't been 'right', and maybe they never will be, I don't know. Please pray that things work themselves out. Thank you.

David is doing well in school. He doesn't like it, of course, but he is doing well. I don't know when this school year will be over for him. We just take one day at a time. I am starting to get 'scanxiety' for his scans next week. Please pray that they come back clear. He has a doctor's appointment with the surgeon (Dr. O'Donnell) on Thursday in San Francisco, and scans in Oakland on Friday. Thank you so much for your prayers.

Another of our osteo family members died on Sunday. Her name was Lena, and she was 23. She fought for a long time. She was misdiagnosed at first, and had a lot of treatments done. She will be missed by her osteo 'family'. Like I have said before, we are a family and we rejoice with the happy news from our members, and we mourn with the loss of our members. Blood doesn't always a family make! Please pray for her family. Thank you. Also, please keep some of our family members in your prayers; Sammie, Nick, Shane, and Rachel. Thanks.

That is about all that is happening. Have a good evening. Sleep tight. Thank you for checking up on David and the Koury family. God bless you all. We love you.

Kristi and the Koury Klan

Nationally, childhood cancer is 20x more prevalent than pediatric AIDS. Pediatric AIDS receives 4x the funding that childhood cancer receives. In one month there are 2x as many deaths from childhood cancer as pediatric AIDS for the entire year.

Wednesday, March 25, 2009

HAPPY BIRTHDAY, BABY GIRL!!! Today is Rachel's birthday! I will post more later. Just wanted to say 'Happy Birthday' to Rachel.

Kristi and the Koury Klan

Monday, March 23, 2009

David's doctor appointment went very well. He is now 5'8" tall and weighs 124 pounds!! We are thrilled about that! He has a sugar-free instant breakfast every night with dinner, and I think that is helping. He is able to maintain his weight because he has 'good' eating days and 'bad' eating days. I guess it all balances out. I am so happy he is doing so well. Connie said he is getting stronger, too. And he is looking good. Connie is very happy with how well David is walking~~~so are we! His knee does buckle on him, but Connie just said be careful on the stairs. If he should fall just walking, he won't fall far; plus his hands can catch him. Falling on the stairs...........that's a different story. We have noticed that his knee tends to buckle more when he is tired. He doesn't have the stamina he used to have, but I suppose that will come in time. But he is doing very well. He has scans April 3rd, so we are praying they come back clear. Please pray for that.

PT went good today. Jennifer came with us. She spent the whole day with us. She had to get the oil changed in her car, so we took her car to Reno. Then she played with David in PT. She got to see how hard he works. Linda put Jennifer on a balance board along with David when they played catch. Linda said she gave Jennifer the 'easy' board (wasn't that sweet?). Jennifer said her legs were tired! David is up to throwing and catching a 6 pound ball. He has to squat down to strengthen his quads and catch the ball. He does very well. We are so proud of him. He 'complains', but he really puts his heart into it. He did get nauseous during PT, tho. Connie gave me a prescription for more Zofran. I don't know when this will ever end!

Well, that is about it for today. We are going to go to bed early tonight, we are so tired. I am going to quote something I read today~~because it is so true. Ready? Here goes, "Sleep is one of those things that we can never engage in after a cancer diagnosis". You would think that we would be able to get a good nights' sleep now that we are home. Yeah, it doesn't work that way. Once cancer hits your child; life is NEVER the same. We sleep, just not good. We haven't felt rested in 1 and 1/2 years!! There are days that we have to literally drag ourselves through the day. *sigh*

David has PT in the pool tomorrow, please pray that it goes well. Please pray he doesn't get nauseous. I will give him Zofran in the morning, so hopefully that will help. Poor child. Thank you for visiting and checking up on David and the Koury family. Have a good night. God bless you all. We love you.

Kristi and the Koury Klan

Today, up to 75% of the children with cancer can be cured, yet, some forms of childhood cancers, like osteosarcoma, have proven so resistant to treatment that, in spite of research, a cure is illusive.

Saturday, March 21, 2009

Good evening. It is beautiful here in Carson City, Nevada. It is windy, cloudy, and another 'winter' storm is blowing in! It is supposed to snow tomorrow. Old man winter sometimes has a hard time letting go here. One year, quite a few years ago, I wanted to go on a picnic for Mother's Day. I usually like to go on a picnic for Mother's Day. But this one particular year I REALLY wanted to go on a picnic. So that was the plan. I was so excited. Well, we didn't go on a picnic. You know why? We woke up to 6" of snow that morning! My 'party-pooper' family didn't want to go on a picnic in the snow. So we ate our picnic food at home. Oh well, it was still fun.

David did pretty good in PT yesterday. He did get nauseous, tho. But I had given him the Zofran, so the nausea didn't last too long. Then he had a great work-out. Monday he has PT late, at 4:30pm because he has a Dr. appointment in Reno. That appointment is at 10:30, but we are taking Jennifer's car because then she is getting her oil changed. We don't know how long we will be, so his PT is late. Then he has the pool therapy on Tuesday instead of Thursday. I don't know why, they just asked if we could change it next week. We are flexible, so we changed it.

After I posted about David eating so well, now he isn't. He is eating ok, just not as good as he was. I can't wait to see how much he weighs. And I am sure he has grown, too. I am glad about that.

Well, just wanted to stop in and tell you how yesterday went. You all have a great day tomorrow. Thank you for stopping by and checking in. God bless you all. We love you.

Kristi and the Koury Klan

Detecting childhood cancers at an early stage, when the disease would react more favorably to treatment, is extremely difficult.

Thursday, March 19, 2009

Good evening. Today was a pretty good day. David did really well in PT today. It felt good in the therapy pool room; it was nice and warm. David is hot after he is done, but that is because he works hard. He got nauseous in the car on the way home from PT today. He rolled the window down~~even though it was kinda cold. Whatever it takes to help him feel better!

He has been eating real well. For lunch this week he has had a turkey sandwich, chips, and broccoli with ranch. He loves broccoli. I have to tell you a story about that. When he was 9, some good friends of ours got married. They served lunch after the wedding, and David kept going back to the buffet table for more broccoli. The woman who was 'manning' the table saw David coming and would turn the plate around so the broccoli was within his reach. Well, when the person serving the cake came around to our table, David said, "No, thank you. I am too full of broccoli for cake." The guy's jaw dropped!! He couldn't believe a 9-year-old child would rather have broccoli than cake!! But that is my son! I love to see him eat! Like I said before, he went months without being hungry. I will feed him just about anything he wants! He wants broccoli; he gets broccoli! We will find out on Monday how much he weighs, he has an appointment at Renown. Hopefully he has gained some weight.

David has PT again tomorrow. He is not looking forward to it. He works so hard, I am so proud of him. Lu Ann said today that it will be a good year to year and 1/2 of PT for him. She said with the muscle that was removed, plus the fact that he was off his leg for so long, plus the amount of atrophy of the muscles means a long recovery. That's ok. We will do what we have to do. Please pray he doesn't get nauseous tomorrow in PT. I wish I knew when this will end! Poor child.

You all have a good evening. Thanks for visiting and writing in the guestbook. God bless you all. We love you.

Kristi and the Koury Klan

Only 3 percent of the budget from the National Cancer Institute goes towards Pediatric Cancer Research.

Wednesday, March 18, 2009

Good evening. Sorry I didn't update earlier. I had to wait until Jennifer got home from Bible Study so I could take her picture. And that is because I am a dope! The story is a little convoluted. Basically, Jennifer left work at 4pm because she had to be there at 5pm to check in. The shaving didn't start until 6pm. So I picked up Rachel from work at 5, then I picked up Bryon at 5:02 (he works pretty close to Rachel), and we headed to Reno. We got there about 5:45. Because I was a little stressed, I forgot to grab the camera!! I was so mad at myself!! So I had to wait to get a picture. *sigh* I hate it when I am stupid! I have added a picture of Jennifer and David. Jennifer is quite surprised that David is now taller than her! Now she knows how I feel; everyone in my family is taller than me!!

It was a good evening last night. David was on stage with Jennifer as she had her head shaved. We wanted others to see who she was shaving in honor of. It was fantastic to see Teagan!!! She is doing so good. She was literally jumping up and down and bouncing around like a 'normal' 8-year-old! She is such a special little girl!! She is so cute~~I asked Wendy (her mom) if Teagan still limps and she said yes, just a little. Teagan said, "No I don't! Watch!" and she proceeded to walk in circles. She is absolutely adorable! Oh, by the way, she does limp a little (don't tell her I said so, lol). She is such an encouragement to me. I remember back when she couldn't walk and was in a wheelchair. Then she was on two crutches; then on one crutch. Now, you wouldn't even know what she has been through. She is a beautiful little girl. It was so wonderful to see her.

David has PT tomorrow in the pool. Please pray that goes well. As I have said before, he does enjoy the pool. I just sit and watch him do his exercises. He does so well. I can't wait until he walks as good as Teagan! I am really looking forward to that day.

Well, it is late. I gotta go cuddle with David, it is past his bedtime. You all have a good night sleep tonight. Thank you for stopping by. Thank you for all your prayers and love. God bless you all. We love you.

Kristi and the Koury Klan

Wednesday, March 18, 2009

Jennifer did it!! I will post more later, and post a picture or two of her. Check back later! God bless you all. We love you!

Kristi and the Koury Klan

Wednesday, March 18, 2009

Good evening. Sorry I didn't update earlier. I had to wait until Jennifer got home from Bible Study so I could take her picture. And that is because I am a dope! The story is a little convoluted. Basically, Jennifer left work at 4pm because she had to be there at 5pm to check in. The shaving didn't start until 6pm. So I picked up Rachel from work at 5, then I picked up Bryon at 5:02 (he works pretty close to Rachel), and we headed to Reno. We got there about 5:45. Because I was a little stressed, I forgot to grab the camera!! I was so mad at myself!! So I had to wait to get a picture. *sigh* I hate it when I am stupid! I have added a picture of Jennifer and David. Jennifer is quite surprised that David is now taller than her! Now she knows how I feel; everyone in my family is taller than me!!It was a good evening last night. David was on stage with Jennifer as she had her head shaved. We wanted others to see who she was shaving in honor of. It was fantastic to see Teagan!!! She is doing so good. She was literally jumping up and down and bouncing around like a 'normal' 8-year-old! She is such a special little girl!! She is so cute~~I asked Wendy (her mom) if Teagan still limps and she said yes, just a little. Teagan said, "No I don't! Watch!" and she proceeded to walk in circles. She is absolutely adorable! Oh, by the way, she does limp a little (don't tell her I said so, lol). She is such an encouragement to me. I remember back when she couldn't walk and was in a wheelchair. Then she was on two crutches; then on one crutch. Now, you wouldn't even know what she has been through. She is a beautiful little girl. It was so wonderful to see her. David has PT tomorrow in the pool. Please pray that goes well. As I have said before, he does enjoy the pool. I just sit and watch him do his exercises. He does so well. I can't wait until he walks as good as Teagan! I am really looking forward to that day.Well, it is late. I gotta go cuddle with David, it is past his bedtime. You all have a good night sleep tonight. Thank you for stopping by. Thank you for all your prayers and love. God bless you all.
We love you.
Kristi and the Koury Klan

Wednesday, March 18, 2009

Jennifer did it!! I will post more later, and post a picture or two of her. Check back later! God bless you all. We love you!Kristi and the Koury Klan

Monday, March 16, 2009

Good evening. It was a beautiful, windy day today.
David did well in Physical Therapy today. He was a little stiff; Linda thinks it is from him swimming so much on Saturday. But that is a good thing!! He did a lot of exercising on Sat. in the pool with Rachel. They are planning on going again this Sat., too. I remembered to give him the zofran, so he didn't get nauseous today, yay!! He is doing some exercises that he wasn't able to do two weeks ago. He is getting more stable on that leg. But when he gets tired his knee buckles. During one exercise today his knee buckled three times, so Linda said that was enough of that one! But he is doing better. He is still in pain with some of the exercises, but we hope that the pain will go away as he gets a lot stronger. It is difficult getting the quad muscles to 'fire' in a way that they aren't used to. Because so much of the muscle was removed and the remainder stapled back together, it doesn't act 'normal' and we are trying to teach it how to work. It is a slow process, but we will get there. Also, David has a large area on the outside of his knee that is numb; and always will be. They told us that the nerves run sideways and they cut through them when they removed his femur. So, unless they regenerate on their own, he will always have an area that is numb. We will see. He has some other residual 'problems' with his leg, but nothing major. Overall, he is doing well.
I want to thank every one who signed David's guestbook. Chris, thank you so much for the prayers. I, too, am sooooo glad we are back in touch. You have no idea how much we missed you guys. I can't wait to see you when you are out here! Remember, you will be staying with us! We won't take 'no' for an answer! I know I can call on you any time. Thank you for being there. Vicki, Jill, Olga, Karen, Kim, and Lynette~~I know what I say is 'preaching to the choir' to you guys! You are living the same life we are. NONE of us asked for this! NONE of us wanted this! But I am so glad that you guys are out there and you understand my heart. I know that we have each other (across the miles) to support each other. Like my husband said on ACOR; Olga, you are good at pulling us back in when we go crazy! We are all in different places in our journey, and we are all there for each other. Thank you for being there for me and my family. Everyone who prays for us and cares about us and loves us is special to us. We need each other.
Well, tomorrow is the day Jennifer will shave her head in honor of her baby brother. I am kinda nervous about that. Kim, I am proud of you for doing it for Ty. I know it is only hair; but mine is long and I just can't do it! Maybe next year!! Jennifer is very excited and 'antsy' to do it. She is funny. I am so proud of her. Well, I am proud of all of my children. But she did her best at trying to raise money. She didn't reach her goal, but she did her best. I told her that she still did good.
Well, that is about it for tonight. Thank you again for all you do. Thank you for the encouraging words in the guestbook. Thank you for your prayers, friendship, and love. Wylene, thank you for the jokes~~they do bring a smile to David's face. Have a good night. Sleep tight. God bless you all. We love you.

Kristi and the Koury Klan
As a nation, we spend $14 BILLION per year on the space program, but only $35 MILLION on childhood cancer research per year. (Am I the only one who sees a problem with this?!?!)

Saturday, March 14, 2009

Good evening. It was a beautiful day today.

I made breakfast burritos for brunch. They were yummy!! I don't usually make that kind of thing, but I was in the mood for it this morning, so everyone woke up to the smell of breakfast burritos. By the time we ate it was 10:30, so it was brunch. We started the day off quite full.

Today was a normal busy day. David cleaned his room; I vacuumed it; and he played games. Then he and Rachel went to the swim center for a few hours. David showed her some of the exercises he does in the therapy pool. Then they played in the other pools. Those pools aren't as warm as the therapy pool, but the kids still had a blast! It was great for him to swim around in the bigger pool. Rachel said he did a lot of swimming, so I am happy about that. Bryon and I did a little bit of shopping~~~you know, the milk, eggs, bread, lunch meat~~things I seem to run out of between paydays. Oh well. Then Jennifer, Lucy, Rachel, and David went to sushi for dinner. Bryon and I ate leftovers! Overall, it was a pretty good day.

Bryon and I were talking today, and we discovered something interesting. The people we thought would be here for us in our greatest time of need; aren't. The ones who we didn't 'expect' to be here; are. And some have abandoned us in the middle. One osteo mom said that maybe they don't mean to, it just gets too hard for them. Well, it must be nice to be able to just walk away when the going gets tough, huh? We can't do that! Bryon said at first they were there and it was a 'novelty' time. Then, they realized that this is going to be life-long, and they can't handle it; they got tired of it. I wrote a LONG time ago that at times like these you find out who your friends are, and it is still true. Like I said, the ones we thought would be here just aren't. That is why we are so thankful for our 'osteo family' from our website. We know they are there any time, day or night. They are in the same boat we are in (and praying that the boat doesn't sink), so they know how important it is to be there for each other. Just because our children go through a time when they seem like they are 'fine,' they really aren't. People think that because David is at the point where he is 'cancer free' right now it is over for us. That could not be farther from the truth. This will NEVER be over! We were asked today by a friend if there is a 'cure' for this cancer. Well, not in the same way as other cancers. He will have scans and tests FOREVER!! He can't just get to the 'magical' 5-year mark and be declared cured. It doesn't work that way with osteosarcoma. I wish it did; but it doesn't. Sorry, I am feeling a little blue and down today. I am still, sometimes, in that place where I can't believe I am living this life; and my child has CANCER!! Sometimes I just can't wrap my mind around it. I look at my baby and I can't believe the hell he has been through. *sigh* It is hard to explain my emotions, sorry.

I hoped you checked out David's other website with the pictures of his scans. Bryon is doing a good job on that site. Thank you for visiting here and checking up on David, and us. Please continue to pray for Sammie, she is struggling big time. Have a good night. Sleep tight. God bless you all. We love you.

Kristi and the Koury Klan

Feed your faith and your fears will starve to death. ~Author Unknown

Thursday, March 12, 2009

Good evening. It was a beautiful day today. Still cold, but clear and beautiful.

David did well in the pool today. Lu Ann said he is doing better. He is getting stronger, and we are so happy about that. We really want to make sure his leg gets really strong before his next lengthening. The better he gets before surgery, the better he will be after. So we really want to get him as good as we can. He is getting there, because he tries so hard. He does everything he is asked to do; always has. He is very compliant.

More sad news; another osteo warrior lost his battle with this ugly monster. I HATE THIS CANCER!! This has been a horrible past few months! Here is his website: www.caringbridge.org/visit/loganboyd1. We are all so sick of watching these children die! I have said it before, but I think it bears repeating. They need more funding for Childhood Cancer Research! They have so much funding for alot of other cancers; breast cancer, lung cancer, colon cancer, etc. These are primarily adult cancers. Well, they won't need to worry about these cancers if they don't fund childhood cancer!! There won't be enough adults with these cancers~~~they let them die as children!! I am not saying that children who survive cancer will get these other cancers in adulthood; I am saying there won't be many adults!! Maybe that doesn't make sense, but I know what I feel, I just have a hard time putting it into words. Please pray for Logan's family. Thanks.

On that note, Jennifer is raising money for childhood cancer research. Go to www.stbaldricks.org and click on 'find a participant' and type in Jennifer Koury as a shavee. Yes, she is shaving her head in honor of her brother. Is that special, or what? It is only hair, and it will grow back. If you feel led to, please donate in her name. All the money goes to help find a cure for childhood cancer!Thank you in advance if you donate to her (well, not her exactly.....).

David has PT again tomorrow. Please pray he does well. Thank you.

Well, I am tired; it has been a loooong day. Have a good day tomorrow. Thank you for visiting. God bless you all. We love you.

Kristi and the Koury Klan

Monday, March 9, 2009

Good evening. Sorry I haven't updated for awhile. It has just been too hard lately. We have been very busy, and it has just been emotional. The website we are on (an osteosarcoma support group) is our 'family' and when one of the children die, it is like one of our children has died. I have said before, we have a special bond. A bond that NONE of us wanted, but we are bound just the same. I was 'talking' to another mom this evening, and she said it best, "Sisters we are now....no matter what." And that is the truth. If you would like to visit her son's site, it is www.caringbridge.org/visit/tyulmer. They are a wonderful family; and Ty is a nut! He has a fantastic attitude about everything. Please pray that Ty clears the 'meth' from his system by Thursday. Thanks.

David had PT today. Linda is pleased with him; when he lays on the table he is able to get his leg straight without her pushing on it. She is very happy about that. He is doing so well. I think if he didn't limp; because of the leg length difference, you would never know. His leg moves real well; considering a good amount of the quad muscle was removed! But I forgot to give him zofran this morning, so he got nauseous today. He even had to stop doing one of his exercises because he was too nauseous to go on. Poor kid. When will this ever end? Osteosarcoma leaves a daily reminder of all the things it stole from our children. Most people do not understand. It is so much more that just diagnosis, chemo, surgery, more chemo, more surgery, more chemo and then move on with life. We all wish it was that easy. We look at things so different from other people. Every time David coughs I wonder if he has lung mets. Every time his knee buckles, I am concerned that he will fall and break either the bone or the prosthesis. His childhood has been 'stolen' from him. Linda said she can't imagine how hard it must be for him to not be able to do the 'normal' things that other teenage boys take for granted. And how hard it must be for us to know he can never do the 'normal' teenage things. IT SUCKS!! A child without osteo tripping and falling is almost to be expected; my other children did it! But it could be disastrous for David to trip! We have to sort of put him in a bubble of protection~~sometimes over protection. And, yes, we are 'moving forward' with life; but this will never be over. This isn't something that we can just put behind us and go on. Again, osteo leaves a daily reminder! *sigh*

Well. I better go. I need to get David's medicine. See, another reminder; lots of daily and twice daily meds! Thank you for visiting, and for your prayers. Keep the prayers coming, we need them. God bless you all. We love you.

Kristi and the Koury Klan

“Time is shortening. But every day that I challenge this cancer and survive is a victory for me.” Ingrid Bergman quotes (Swedish born American film and stage Actress, 1915-1982)

Saturday, March 7, 2009

Good evening. Sorry I haven't posted earlier. It has been a busy, emotional day. Again, my heart is heavy. Another osteo warrior has lost his battle. Keagan died at 11:22 this morning. He died in his mother's arms. Please pray for her, her name is Gina, and for the rest of the family. She isn't sure how to tell her 3-year-old daughter. Apparently Keagan and his sister were close. Anyway, please pray for that family. Too many of our osteo children are losing their battles with this horrible, unrelenting monster!! WE WANT A CURE!! Thank you for your prayers for this family. Keagan fought just four short months. He was only 15.

David did well in PT yesterday. He complaines, but he does it. He is so funny. He is getting more 'verbal' with Linda, and that is good. Remember, I told you that this cancer nightmare changed my child. He became very quiet and withdrawn. He doesn't talk to people, and we have to remind him to look people in the eye and speak up when they talk to him. It is very sad what cancer does to children~~not just physically. But he is doing better, so that is good.

Well, I need to go. I am so very tired. And I lose my hour tonight; grrrrr. I HATE daylight savings time. I think it is totally stupid. Oh well. Have a good night tonight, and a good day tomorrow. Sleep tight. God bless you. We love you. ((HUGS))

Kristi and the Koury Klan

Friday, March 6, 2009

Good evening. Another short update; need to go to bed. We heard that Keagan's mom, Gina, made it to Seattle to be with Keagan. She made it in time. They were worried that he would die before she got there; she lives in another state. Anyway, we have no other news so far. Please continue to pray for Gina and Keagan. I will update tomorrow on how today went. Thank you for all the jokes and riddles you have been sending to David~~they make him smile (and laugh, too). Thank you for reading this. God bless you. We love you.

Kristi and the Koury Klan

Friday, March 6, 2009

Good morning. Quick update~~I need to get ready to take David to PT.

No news on Keagan yet. But I need to clarify that there have already been 3 deaths from this monster this year so far. Brandon, Ryan, and Jaime; Keagan would be #4. Please pray.

More sad news~~just found out Keagan will be #5. Another osteo warrior lost his battle this morning. His name was John. Please pray for his family. I am so frustrated!! We need research to help find out what will cure this dreaded disease, and funding is being cut because of politics!!! SUCKS!!! Sorry, I am very angry.

Gotta run. I will post later if I get any more news. Thank you for your prayers. Have a good day. God bless you all. We love you.

Kristi and the Koury Klan

The wise man in the storm prays to God, not for safety from danger, but for deliverance from fear. ~Ralph Waldo Emerson

Thursday, March 5, 2009

Good evening. David did well in PT today. He really likes going to the pool. Lu Ann is sick, so Linda did PT today. I am glad, she works David harder. So he did very well.

Please, please pray for another of our osteo family members. I told you a couple of days ago about a boy named Keagan. He is 15 and I told you the cancer was throughout his body. Well, they don't expect him to live past the next day or so. He is in a light coma now. His mother is distraught, as I can only imagine. Please pray for that family. This has been a horrible year so far, and it just started! Keagan will be the third death from this monster in less than 3 months. It just sucks so bad. Children should not have cancer! Well, nobody should. But children should not be dying from cancer. I mean, come on! My heart is so heavy, please forgive me if I am not making sense.

I don't really know what else to say. Please pray for all of us. As parents of a child with the same cancer that is killing all these children, we pray that we are never the ones writing the words that our child is dying. Thank you for your prayers. I will keep you posted, please pray. Thank you. God bless you. We love you.

Kristi and the Koury Klan

An estimated 12,400 children in the U.S. are diagnosed with cancer each year, and is the leading cause of death for children under the age of 15. ~ Ruben Hinojosa

Wednesday, March 4, 2009

Good afternoon. We woke up to a winter wonderland again!! TTTYay! You see; I was raised in Southern California where there are only two seasons, hot and not as hot. The only colors I saw on the trees were green and brown. No reds, oranges, or vibrant yellows! So I absolutely love living where there are four seasons! I decided that fall is my favorite season; partly because of all the beautiful colors, and partly because it means that winter is around the corner. I love snuggling in front of our warm fire (or in my cozy bed) and reading a book, or reading my Bible, or whatever. I am not a summer person, but at least here there is almost no humidity in the summer. Which is good, I really hate the humidity. I am so glad that my children were all raised in a climate with four very distinct seasons. Jennifer drove my car to work this morning (I have a Honda Pilot), her car is not 4-wheel-drive. She is very silly. I have leather heated seats (we call them 'bun warmers') and she had the heat turned on, so she was warm, and she had the moon roof opened! She likes the moon roof as much as I do........well, maybe not as much. But close!! It was freezing, and she has the moon roof opened. Crazy girl!!

David is doing ok today. He was a little nauseous, but it is gone. He goes to PT tomorrow in the pool, and he is looking forward to that. Not looking forward to the PT part, but the pool part. It is so good for him, I just can't tell you. The hardest part for me is to watch him walk into the pool and see all those nasty scars on his young body. It is just not right. They should NOT be there. *sigh* The only 'good' thing about all those scars is that they saved his life. Prayerfully, he will live a long life and tell his children about all those scars. Boy, will he have a story to tell. Again, we pray he lives a long time.

Bryon and Jeremy are going to go to Bible Study tonight; I am not sure if Jennifer and David are going. It depends on how David feels, I guess.

Could you please continue to pray for our finances? As you know, I lost my income when David was diagnosed. Well, there is talk that Bryon's income will be cut 6%. We pray that does NOT happen. They are also cutting our insurance benefits and charging us more for them. I believe in paying my bills, but I am so frustrated with Children's Hospital. They treat all the illegal immigrants for FREE; our insurance company has paid them close to $1 million; and they are bugging us for $3,000! If we don't have it, we don't have it! We have spent over $36,000 OUT OF POCKET trying to keep David alive; can't they give us a break? It is all we can do to keep a roof over our heads and gas in the cars to do what we have to do. We don't do any extra things. Anyway, sorry for the ranting. Please pray! Thank you.

Well, that is about all for today. Thank you for your prayers and your love. Thank you for checking in on David (and us). Have a good night. God bless you all. We love you all so much. ((HUGS))

Kristi and the Koury Klan

Do not be afraid of tomorrow; for God is already there. ~Author Unknown

Tuesday, March 3, 2009

Good evening. Yes, Olga, I love the snow!! I am crazy, I know. It has been said before. J And guess what?!?! It is snowing!! YAY! We are supposed to get 4-6 inches tonight! This is definitely turning out to be 'Miracle March' for us. The news said the level of Lake Tahoe (20 minutes from our house) has raised 2 inches in the past 2 days!! That is a LOT of water! So we are happy with the amount of moisture we are getting.

David had a good day. He did school, as usual, and he wasn't nauseous today. That is good. He is enjoying the rain and the snow.

I hate to have to tell you this, but we lost another osteo warrior. His name was Jaime, and he died on Saturday. We so hate to hear of another child dying of the monster that invades our son! In case I haven't said it before, CANCER SUCKS!!! And I hate it so much! There are so many children on our support group website (they are our osteo family) that are suffering. Each one of these children are 'our' children. We have a bond with the parents of these children. A bond that NONE of us wanted, but a bond just the same. Each of us hurts when one of 'our' children losses this battle! We all know that it could be our child. And our hearts break for the parents of each and every one of these children. The success stories are so few and far between. *sigh*

Update on my brother's niece~~~she went to the hospital yesterday for all the pre-chemo 'red tape' and they admitted her. They think the lymphoma has spread throughout her entire body, including her brain. She started chemo right away. I will keep you posted as I get news. Please continue to pray for Holly (and her mom, Cindy; my brother, Mike; and my sister-in-law, Lori). Thank you.

Could you also please continue to pray for Sammie? She is in a lot of pain. Her website (again) is www.caringbridge.org/visit/sammiehartsfield. Thanks

Thank you for visiting. Take care and have a good evening. God bless you all. We love you.

Kristi and the Koury Klan

If you're going through hell, keep going. ~Winston Churchill

Monday, March 2, 2009

Good morning. It is beautiful here today. Cloudy and raining!! YAY! We prefer snow; but we will take the rain.

Sorry I didn't update this weekend; we were fairly busy. David had a good time at the Angel Kiss activity. He enjoyed the movie and the Subway sandwiches. He was hungry when he got home, so I fixed him something to eat. I love it when he is hungry!! He went months without feeling hungry a year ago, so I am happy to hear him say he is hungry. I like to see him eating a little bit like a teenage boy should! We are getting there. Bryon worked from 1:40am-4:10am Sunday morning, so we were pretty tired yesterday morning. David wasn't feeling good yesterday, so we didn't go to church. That was kind of a bummer. Then Jeremy and Lucy came over for lunch; I made stew! It was cold and rainy yesterday, too, so the stew hit the spot. We had the stew and some yummy crunchy bread and wonderful fellowship. Then I had to cut David's hair; just kind of 'clean it up' a bit. I would think that after him being bald for a year he would want his hair on the longish side. NOPE! He likes it short. So I cut his hair and I cut Rachel's bangs. So we had a good weekend.

Today David has PT; it is almost time for him to be getting ready to go. He isn't looking forward to it, as usual, but he is a trooper and does it anyway. Please pray that he does well. I gave him his zofran, so hopefully he will feel ok. He did start to feel nauseous on Friday during PT, so please pray he doesn't get nauseous today. Thanx.

I got a call from my brother on Saturday. Please add his niece (his wife's sister's daughter) to your prayer list. Her name is Holly. They found out she has lymphoma. She had a kidney transplant 6 or so years ago, and her anti-rejection drugs caused lymphoma. She is 20 (I think) and she starts chemo tomorrow. My brother and sister-in-law would appreciate the prayers for Holly. Thank you.

Also, could you please continue to pray for our finances? Thanks.

Well, that is about all that is happening around here. You all have a great day today. Thank you for all your prayers and love. Thank you for visiting here and checking up on David. God bless you all. We love you. <><

Kristi and the Koury Klan

Toughness is in the soul and spirit, not in muscles. ~Alex Karras