Good evening. Go to David's other website, there are some new pictures of him doing PT today. The pictures aren't that great, I didn't have my camera so they were taken on a phone. But you get the jist of what he does.
He did fantastic in PT today. Linda does cause him pain, but he knows it is for his own good. He, again, just does what he is told. He is the bravest child I have ever met. We are so proud of him.
Right now I am home all alone. Bryon and Jennifer went to the Arena cross races (I hope that is how it is spelled) in Reno. That is the motorcycle races. And Rachel and David went to UNR in Reno to an Angel Kiss function. They have monthly activities, and tonight it is movie night!! They had sub sandwiches and they are watching Kung Fu Panda. That should be fun. So I am having a quiet evening; just me and the cats and the dogs. I kinda like these kind of evenings; they don't happen very often! Our lives are so stressful I rarely get any peace and quiet. So I am enjoying it. Would I want it all the time? Of course not!!! But I am going to enjoy it now.
Today was a busy day. We went to PT of course, then we had to go to the bank and the gas company. Then I cleaned the kitchen. Then Bryon and I washed the windows in the living room. Boy, was that a chore! He did the outside and I did the inside. I am not a window washer~~~I hate doing windows! But boy, does it look good! Then we washed the windows in the front door and the sidelights. So now the front windows look great! Next is the sliding door to the backyard and all the back windows. I get tired just thinking about it! Ha-ha! Then maybe we will tackle all the upstairs windows! We will see.
Well, that is about it for today. Please check the other site at the new pictures. Thank you for visiting. Have a good evening. God bless you all. We love you.
Kristi and the Koury Klan
I'm going to beat this cancer or die trying. (one of David's mottos)~ Michael Landon
Friday, February 27, 2009
Thursday, February 26, 2009
Thursday, February 26, 2009
Good evening. I hope tonight finds you healthy. We have had some absolutely beautiful days here lately. It has been extremely windy~~but we like the wind. Jeremy even said there was a little 'tornado' at the DMV yesterday. He said it picked up a camper shell and damaged a couple of vehicles. Amazing. I saw a dust devil yesterday, but not a tornado. The wind has calmed down some now. And we are supposed to have snow in a couple of days.
David has PT again tomorrow morning. He is not looking forward to it; but, as usual, he will persevere and do what he is asked to do. I just cannot believe the courage and bravery of this child. He amazes us daily. I am not sure I would have been able to handle everything that has been asked of him. These children (the ones going through cancer) totally amaze me. They are true heroes.
I want to thank each and every one of you who keep reading this journal. Thank you for caring about and loving us. Thank you for understanding that this is far from over. This is a battle that we will be fighting for a very long time. We have been told that we can't even use the word 'remission' for 5 years of David being NED (No Evidence of Disease). So we are aware of a long journey. So you are going to be praying for David for a long time. I hope you don't mind.J
There are some other osteo children going through some really tough struggles right now. I ask you to please pray for them. Their names are Shane, Sammie, and Keagan. Keagan just had scans today (he is 15), and the cancer is throughout his entire body. They are trying some chemos on him; but they don't give him much hope. He is very scared, of course. He lives in Washington. Sorry, no website for him. The other children's sites, if you want to visit, are www.caringbridge.org/visit/sammiehartsfield and www.caringbridge.org/visit/1shane. Please keep them in your prayers. Thank you.
Pastor Larry and Chris, thank you so much for the care package for David. The swimsuit will come in very handy! And he loves all the other gifts in the box. He was very excited when he saw inside the card! Thank you so much for showing your love to him (and us). It means a lot more than you will ever know.
Well, gotta go. You all have a good night, and I will let you know how PT goes tomorrow. Thanks again for visiting. God bless you all. Sleep tight. We love you.
Kristi and the Koury Klan
Courage is being afraid but going on anyhow. ~Dan Rather
David has PT again tomorrow morning. He is not looking forward to it; but, as usual, he will persevere and do what he is asked to do. I just cannot believe the courage and bravery of this child. He amazes us daily. I am not sure I would have been able to handle everything that has been asked of him. These children (the ones going through cancer) totally amaze me. They are true heroes.
I want to thank each and every one of you who keep reading this journal. Thank you for caring about and loving us. Thank you for understanding that this is far from over. This is a battle that we will be fighting for a very long time. We have been told that we can't even use the word 'remission' for 5 years of David being NED (No Evidence of Disease). So we are aware of a long journey. So you are going to be praying for David for a long time. I hope you don't mind.J
There are some other osteo children going through some really tough struggles right now. I ask you to please pray for them. Their names are Shane, Sammie, and Keagan. Keagan just had scans today (he is 15), and the cancer is throughout his entire body. They are trying some chemos on him; but they don't give him much hope. He is very scared, of course. He lives in Washington. Sorry, no website for him. The other children's sites, if you want to visit, are www.caringbridge.org/visit/sammiehartsfield and www.caringbridge.org/visit/1shane. Please keep them in your prayers. Thank you.
Pastor Larry and Chris, thank you so much for the care package for David. The swimsuit will come in very handy! And he loves all the other gifts in the box. He was very excited when he saw inside the card! Thank you so much for showing your love to him (and us). It means a lot more than you will ever know.
Well, gotta go. You all have a good night, and I will let you know how PT goes tomorrow. Thanks again for visiting. God bless you all. Sleep tight. We love you.
Kristi and the Koury Klan
Courage is being afraid but going on anyhow. ~Dan Rather
Tuesday, February 24, 2009
Tuesday, February 24, 2009
Good evening. It is so beautiful here. Today was a beautiful day. It was rather warm, around 55* or so, and I had the living room windows open. My cats broke my lamp in my living room, so I had to clean that up. So I decided to re-arrange my living room. That was a chore! I even washed the curtains! But now the living room looks a lot bigger. I really like the way I arranged it. I guess I kinda had 'spring fever' a bit today!
David did well in PT today. Linda works him harder than Lu Ann; but we think that is because Linda knows him better, and knows what he can do. So he got quite the work out today. And I got the 'bad mom of the day' award today. We left in kind of a rush, and I forgot to grab his towel!! I told him I would go home and get it, but he didn't want me to leave. Remember, he has become a different child with this cancer disaster. He doesn't like to be left 'alone' at any time. But that is ok. He will eventually get over this phase. So after PT he just put his sweats over his swimsuit and we went home. He wasn't upset, just cold! But he did great today.
Tonight for dinner we went to IHOP because they were serving free pancakes. They just asked for a donation to Children's Miracle Network. So we wanted to support that cause! All the proceeds go to the local organizations. Miss Nevada was at our Carson City IHOP, so we took a picture of her with David. I have added it to the photos page. We thought she was just going to be in Reno, so we were surprised to see her in podunk Carson City. She was very sweet.
Well, that is about all that happened today. I just thought I would let you know how good David did today. Thank you for visiting and checking in on David. Thank you for your prayers and love. God bless you all. We love you. <><
Kristi and the Koury Klan
David did well in PT today. Linda works him harder than Lu Ann; but we think that is because Linda knows him better, and knows what he can do. So he got quite the work out today. And I got the 'bad mom of the day' award today. We left in kind of a rush, and I forgot to grab his towel!! I told him I would go home and get it, but he didn't want me to leave. Remember, he has become a different child with this cancer disaster. He doesn't like to be left 'alone' at any time. But that is ok. He will eventually get over this phase. So after PT he just put his sweats over his swimsuit and we went home. He wasn't upset, just cold! But he did great today.
Tonight for dinner we went to IHOP because they were serving free pancakes. They just asked for a donation to Children's Miracle Network. So we wanted to support that cause! All the proceeds go to the local organizations. Miss Nevada was at our Carson City IHOP, so we took a picture of her with David. I have added it to the photos page. We thought she was just going to be in Reno, so we were surprised to see her in podunk Carson City. She was very sweet.
Well, that is about all that happened today. I just thought I would let you know how good David did today. Thank you for visiting and checking in on David. Thank you for your prayers and love. God bless you all. We love you. <><
Kristi and the Koury Klan
Monday, February 23, 2009
Monday, February 23, 2009
Good evening. It is beautiful here. VERY windy and cold. It is supposed to rain......we'll see.
David did good in PT today. He has PT in the pool tomorrow. Yeah, I know it is only Tuesday; but Lu Ann is gone so Linda will do the pool therapy tomorrow. So David sees Linda 3 times this week! I really like Linda, she is good with David. He does his token complaining (he said he has to do it, lol) but he does all the exercises she askes him to do. He wears shorts now~~~he gets way too hot in long pants! But he did real well today. His bend is at 124*, so we are almost where he was before lengthening surgery (in the bend). He is such a trooper.
I want to thank everyone who wrote in the Guestbook. Your words were a balm to my soul. Yes, it is horrible to hear of a child dying of the same monster that is in my child's body! IT SUCKS!! I hate this cancer. I know the fear is still there even when your child is not metastatic~~you never know if and when they will become metastatic. I still can see the doctor's face when she told us that the cancer was in David's lungs. I could tell she didn't want to tell us. I am sure it is not easy for them to have to tell parents that~~~but it is no walk in the park for us, either!!! But we are going to fight this with all we have. I am just so angry. Lu Ann, you are right; God is not the author of death and disease. I blame satan for this. I posted a few months back about something we learned in church. I will post it again so you 'newbies' to David's site don't have to go looking for it. Here it is: satan knows that the best way to hurt God is to hurt his children. We parents know that the best way to 'get to' us is to 'attack' our children; same with God. Satan hurts God by doing these things (cancer) to His children. It grieves God to see His children suffer. But that is why I have said that satan picked the wrong child to attack. If David dies (we pray NOT), he goes to heaven to wait for us and spend eternity with God and us~~he wins! If he lives~~he wins and he is a testimony for God. Either way, satan loses! But he (satan) is just too stupid to know that!! All this is easy for me to say, but I really don't know how I will handle it if David should die. But I just pray he lives; and I will 'worry' about the future when it happens.
Well, that is about it for tonight. Have a good night. Please pray that David has a good PT session tomorrow. Thanks for visiting. Sleep well. God bless you all. We love you! (((HUGS)))
Kristi and the Koury Klan
David did good in PT today. He has PT in the pool tomorrow. Yeah, I know it is only Tuesday; but Lu Ann is gone so Linda will do the pool therapy tomorrow. So David sees Linda 3 times this week! I really like Linda, she is good with David. He does his token complaining (he said he has to do it, lol) but he does all the exercises she askes him to do. He wears shorts now~~~he gets way too hot in long pants! But he did real well today. His bend is at 124*, so we are almost where he was before lengthening surgery (in the bend). He is such a trooper.
I want to thank everyone who wrote in the Guestbook. Your words were a balm to my soul. Yes, it is horrible to hear of a child dying of the same monster that is in my child's body! IT SUCKS!! I hate this cancer. I know the fear is still there even when your child is not metastatic~~you never know if and when they will become metastatic. I still can see the doctor's face when she told us that the cancer was in David's lungs. I could tell she didn't want to tell us. I am sure it is not easy for them to have to tell parents that~~~but it is no walk in the park for us, either!!! But we are going to fight this with all we have. I am just so angry. Lu Ann, you are right; God is not the author of death and disease. I blame satan for this. I posted a few months back about something we learned in church. I will post it again so you 'newbies' to David's site don't have to go looking for it. Here it is: satan knows that the best way to hurt God is to hurt his children. We parents know that the best way to 'get to' us is to 'attack' our children; same with God. Satan hurts God by doing these things (cancer) to His children. It grieves God to see His children suffer. But that is why I have said that satan picked the wrong child to attack. If David dies (we pray NOT), he goes to heaven to wait for us and spend eternity with God and us~~he wins! If he lives~~he wins and he is a testimony for God. Either way, satan loses! But he (satan) is just too stupid to know that!! All this is easy for me to say, but I really don't know how I will handle it if David should die. But I just pray he lives; and I will 'worry' about the future when it happens.
Well, that is about it for tonight. Have a good night. Please pray that David has a good PT session tomorrow. Thanks for visiting. Sleep well. God bless you all. We love you! (((HUGS)))
Kristi and the Koury Klan
Sunday, February 22, 2009
Sunday, February 22, 2009
Good evening. It is with a very heavy heart that I must tell you that Brandon died this afternoon. 2 years and 1 day after diagnosis. It is very difficult for us to read of another osteo warrior dying. We know that it could possibly be our turn to write those horrible words someday. It sucks more than I can say. Only other osteo parents can know what Bryon and I are feeling right now. How are we supposed to tell our child there is hope, when so many of the other osteo warriors are dying? Especially when they (the doctors) don't give David much of a chance; and statistically he has less than 20% chance of surviving long term, despite aggressive therapy!? The children who have lived the longest seem to be the ones who are/were NOT metastatic at diagnosis. David was metastatic at diagnosis. I don't know. I just remembered that another young man died on Feb 5; his name was Ryan. I mentioned him late last year. They told him in December that he had 2-3 months to live. I am so sick of this cancer. It is so aggressive; so scary; so seemingly unstoppable!!! *sigh* Please pray for our family. It is getting so scary for us. 'Scanxiety' for David's scans in April is kicking in, BIG time! With more and more children dying and relapsing. . . .
David is feeling ok. He has PT tomorrow. Please pray for him to feel better. Please pray that PT goes well for him. Weekends go way too fast for him; and us, too, of course. I am including a saying I read today:Do you want to see heroes? Go to the Children’s Cancer Hospital, they fill the clinic and the halls. Their laughter echo’s through the building. Their beautiful smiles brighten the rooms like welcomed sunshine! Their courage is like no other.That is totally the truth!!
Anyway, you all have a great week this coming week. Please remember all these osteo families in your prayers. Thank you. We love you. God bless you all.
Kristi and the Koury Klan
David is feeling ok. He has PT tomorrow. Please pray for him to feel better. Please pray that PT goes well for him. Weekends go way too fast for him; and us, too, of course. I am including a saying I read today:Do you want to see heroes? Go to the Children’s Cancer Hospital, they fill the clinic and the halls. Their laughter echo’s through the building. Their beautiful smiles brighten the rooms like welcomed sunshine! Their courage is like no other.That is totally the truth!!
Anyway, you all have a great week this coming week. Please remember all these osteo families in your prayers. Thank you. We love you. God bless you all.
Kristi and the Koury Klan
Friday, February 20, 2009
Friday, February 20, 2009
10:36 PM, PST
Good evening. David did well in PT today. Linda does things that cause pain, but he know it is only to help him. We told him that since he really doesn't like going to PT (except the pool), then the harder he works the faster he will improve, and the sooner he can quit going. He does work hard and we are so very proud of him.
It is with a heavy heart that I write another osteo warrior is dying. In case I haven't said it before, I HATE CANCER!! This sucks so much. Here is what his mom wrote:Brandon has asked me to do an update to inform all his loving supporters that the end is near. He was moved to ICU last night because he was struggling with his breathing and heart. This morning we were told that the Osteo is taking over... his cancer is surrounded his lungs on the outside and is basically beyond control at this point. He is exhausted... he has asked a couple of friends to come to DeVos and that is about all he can handle today. I will let you know when he is stable enough for visitors. We can not use cell phones in ICU but he can read his text messages. I don't know what more to say other than I reassured him how very proud I am of him for battling through this with the utmost dignity and grace and without a doubt he make an impact on many people. Forever B's Mom Please pray for this family. His caring bridge site is www.caringbridge.org/visit/brandongordon. All of us osteo parents know that this could be something we could be writing at any time. Please, please pray for this family. Thank you.
Well, you all have a good evening. Thank you for your prayers, we need them! Thank you for checking in on David. Thank you so much for your love. God bless each and every one of you. We love you.
Kristi and the Koury Klan
Good evening. David did well in PT today. Linda does things that cause pain, but he know it is only to help him. We told him that since he really doesn't like going to PT (except the pool), then the harder he works the faster he will improve, and the sooner he can quit going. He does work hard and we are so very proud of him.
It is with a heavy heart that I write another osteo warrior is dying. In case I haven't said it before, I HATE CANCER!! This sucks so much. Here is what his mom wrote:Brandon has asked me to do an update to inform all his loving supporters that the end is near. He was moved to ICU last night because he was struggling with his breathing and heart. This morning we were told that the Osteo is taking over... his cancer is surrounded his lungs on the outside and is basically beyond control at this point. He is exhausted... he has asked a couple of friends to come to DeVos and that is about all he can handle today. I will let you know when he is stable enough for visitors. We can not use cell phones in ICU but he can read his text messages. I don't know what more to say other than I reassured him how very proud I am of him for battling through this with the utmost dignity and grace and without a doubt he make an impact on many people. Forever B's Mom Please pray for this family. His caring bridge site is www.caringbridge.org/visit/brandongordon. All of us osteo parents know that this could be something we could be writing at any time. Please, please pray for this family. Thank you.
Well, you all have a good evening. Thank you for your prayers, we need them! Thank you for checking in on David. Thank you so much for your love. God bless each and every one of you. We love you.
Kristi and the Koury Klan
Thursday, February 19, 2009
Thursday, February 19, 2009
Good evening.
David did very well in the pool today. He works really hard. He is such a trooper! It was cold outside after the warm pool, but it felt good! The room with the therapy pool is very hot, and the chairs I sit in are in the sun. But I don't really mind. Next week I will move a chair so I won't be sitting in the sun. I just sit and read my Bible while he is working out. The hour goes by pretty fast. He was a little sore after working so hard, but he did great!
He has PT again tomorrow in the office. Please pray that it will go well. He is trying hard. I have to give him zofran on the days he has PT, but that will end soon; hopefully. He really isn't looking forward to PT tomorrow, but he knows he has to do it. Our oncologist told us that Osteo is a 'sucky' cancer in that there are lifetime 'adjustments' that need to be made. She said, "with cancer like leukemia; you do chemo and then it's over. They don't have to do all the PT to try to get back to some kind of normal." You know, she was right. A fellow osteo mom said it best; she said these kids are on a lifelong journey of pain. That couldn't be said any better. Please continue to pray for David. Thanks.
Well, that is about all for now. You all have a good evening. Thank you for checking up on David. God bless you all. We love you. ((HUGS))
Kristi and the Koury Klan
David did very well in the pool today. He works really hard. He is such a trooper! It was cold outside after the warm pool, but it felt good! The room with the therapy pool is very hot, and the chairs I sit in are in the sun. But I don't really mind. Next week I will move a chair so I won't be sitting in the sun. I just sit and read my Bible while he is working out. The hour goes by pretty fast. He was a little sore after working so hard, but he did great!
He has PT again tomorrow in the office. Please pray that it will go well. He is trying hard. I have to give him zofran on the days he has PT, but that will end soon; hopefully. He really isn't looking forward to PT tomorrow, but he knows he has to do it. Our oncologist told us that Osteo is a 'sucky' cancer in that there are lifetime 'adjustments' that need to be made. She said, "with cancer like leukemia; you do chemo and then it's over. They don't have to do all the PT to try to get back to some kind of normal." You know, she was right. A fellow osteo mom said it best; she said these kids are on a lifelong journey of pain. That couldn't be said any better. Please continue to pray for David. Thanks.
Well, that is about all for now. You all have a good evening. Thank you for checking up on David. God bless you all. We love you. ((HUGS))
Kristi and the Koury Klan
Wednesday, February 18, 2009
Wednesday, February 18, 2009
Good evening.
We woke up to a winter wonderland this morning! It was so beautiful. And it was a bit foggy, which made for a pretty morning. A bit cold, but beautiful.
David had a good day today. He did school, and played. Tomorrow he goes to PT in the pool again. He likes the pool so much better than going to the office for PT. Lu Ann works him as hard as Linda, but being in the pool is just so much more fun for him. He just hates getting out of the pool. I always worry about him getting sick, he gets out of the 92* pool and goes outside in the 20* air! But he is doing well. Please pray that he does well tomorrow. He does get sore from working so hard; but it is a good sore. I am so proud of him. He is trying very hard.
Well, that is about all for now. You all have a good evening. I will post tomorrow and let you know how things go. Thank you so much for visiting and checking in on David. God bless you all. We love you.
Kristi and the Koury Klan
We woke up to a winter wonderland this morning! It was so beautiful. And it was a bit foggy, which made for a pretty morning. A bit cold, but beautiful.
David had a good day today. He did school, and played. Tomorrow he goes to PT in the pool again. He likes the pool so much better than going to the office for PT. Lu Ann works him as hard as Linda, but being in the pool is just so much more fun for him. He just hates getting out of the pool. I always worry about him getting sick, he gets out of the 92* pool and goes outside in the 20* air! But he is doing well. Please pray that he does well tomorrow. He does get sore from working so hard; but it is a good sore. I am so proud of him. He is trying very hard.
Well, that is about all for now. You all have a good evening. I will post tomorrow and let you know how things go. Thank you so much for visiting and checking in on David. God bless you all. We love you.
Kristi and the Koury Klan
Tuesday, February 17, 2009
Tuesday, February 17, 2009
Good afternoon. It is a cold, dreary, beautiful day!! We love days like this! Supposed to get more snow! YAY!!
David worked VERY hard at PT today. He was very hot, sweaty, and tired. But he did great! His leg is starting to 'loosen' up some; the muscles are getting nice and stretched. I am so proud of him and how hard he works. He does his token 'complaining,' but he still does everything he is asked to do. He is such a trooper. I know I have said that many times, but it bears repeating! I am VERY proud to be his mom.
Connie called this morning (right before I left for PT), and David is scheduled for scans at Oakland Children's Hospital on April 3rd. We will register at 8:30am; then they will draw labs (including B12 levels); then he will be injected with the contrast for the bone scan; then he will have the chest CT scan with contrast; then he will have the bone scan. He will not be allowed to eat breakfast. When he has the chest CT scan with contrast he can't have breakfast. I am not 100% sure why, but that is the way it is. So we are all set for 2 days in the Bay Area. But Family House is open now, so Bryon will call Tracy (our social worker) and have her set it up for us to stay there the night of April 2nd. Good thing, we sure can't afford to stay in a hotel!
It is snowing!! I just looked outside and it is snowing. Woo-Hoo!!
That is the haps for today. Thank you for checking in on David. Thank you for writing in the guestbook. Have a good day today. God bless you. We love you.
Kristi and the Koury Klan
David worked VERY hard at PT today. He was very hot, sweaty, and tired. But he did great! His leg is starting to 'loosen' up some; the muscles are getting nice and stretched. I am so proud of him and how hard he works. He does his token 'complaining,' but he still does everything he is asked to do. He is such a trooper. I know I have said that many times, but it bears repeating! I am VERY proud to be his mom.
Connie called this morning (right before I left for PT), and David is scheduled for scans at Oakland Children's Hospital on April 3rd. We will register at 8:30am; then they will draw labs (including B12 levels); then he will be injected with the contrast for the bone scan; then he will have the chest CT scan with contrast; then he will have the bone scan. He will not be allowed to eat breakfast. When he has the chest CT scan with contrast he can't have breakfast. I am not 100% sure why, but that is the way it is. So we are all set for 2 days in the Bay Area. But Family House is open now, so Bryon will call Tracy (our social worker) and have her set it up for us to stay there the night of April 2nd. Good thing, we sure can't afford to stay in a hotel!
It is snowing!! I just looked outside and it is snowing. Woo-Hoo!!
That is the haps for today. Thank you for checking in on David. Thank you for writing in the guestbook. Have a good day today. God bless you. We love you.
Kristi and the Koury Klan
Saturday, February 14, 2009
Saturday, February 14, 2009
Good evening. Happy Valentine's Day! This background is only for today~~~~David would NOT want it on forever! He is such a silly kid.
David is doing good today. He had a rough day yesterday with PT. The stretching Linda did of his muscles was quite painful for him. Behind his knee is where most of the pain is coming from. It is strange; even when she is stretching his quads, it hurts behind his knee. We aren't sure if the lengthening tweaked the muscles somehow, or what. If it doesn't get better we will talk to Dr. O about it and see what he says. David always does everything asked of him, even if it is painful. He is such a trooper. I have never met a braver or more courageous child in my life! Please pray that we can get those muscles stretched and that the next lengthening surgery will not set him back so far. It just gets rather frustrating. *sigh*
We are having a nice quiet evening tonight. The girls are out, so it is just Bryon, David, and I. I will be making leftovers for dinner. Can't afford to go out, anyway.
We are really hoping to be able to go on some kind of a vacation this summer. We haven't been on a vacation for a few years. We have gone camping, but we haven't really gone on vacation. We aren't sure where we would go, that takes a 'family pow-wow' to decide!! The kids do NOT want to go to San Francisco, go figure. I would love to go to the Oklahoma City bombing memorial again (we went there about 5 years ago), but I don't know. We would also love to go to NASA; four corners (again); Grand Canyon (again); Bryce Canyon; and a few other places. It probably will not be in the budget to do much of anything, but who knows. We will just have to see.
Well, I need to go warm up the leftovers. Have a good evening. Thanks for checking in on David. Thank you for your love and your prayers. God bless you. We love you.
Kristi and the Koury Klan
David is doing good today. He had a rough day yesterday with PT. The stretching Linda did of his muscles was quite painful for him. Behind his knee is where most of the pain is coming from. It is strange; even when she is stretching his quads, it hurts behind his knee. We aren't sure if the lengthening tweaked the muscles somehow, or what. If it doesn't get better we will talk to Dr. O about it and see what he says. David always does everything asked of him, even if it is painful. He is such a trooper. I have never met a braver or more courageous child in my life! Please pray that we can get those muscles stretched and that the next lengthening surgery will not set him back so far. It just gets rather frustrating. *sigh*
We are having a nice quiet evening tonight. The girls are out, so it is just Bryon, David, and I. I will be making leftovers for dinner. Can't afford to go out, anyway.
We are really hoping to be able to go on some kind of a vacation this summer. We haven't been on a vacation for a few years. We have gone camping, but we haven't really gone on vacation. We aren't sure where we would go, that takes a 'family pow-wow' to decide!! The kids do NOT want to go to San Francisco, go figure. I would love to go to the Oklahoma City bombing memorial again (we went there about 5 years ago), but I don't know. We would also love to go to NASA; four corners (again); Grand Canyon (again); Bryce Canyon; and a few other places. It probably will not be in the budget to do much of anything, but who knows. We will just have to see.
Well, I need to go warm up the leftovers. Have a good evening. Thanks for checking in on David. Thank you for your love and your prayers. God bless you. We love you.
Kristi and the Koury Klan
Thursday, February 12, 2009
Thursday, February 12, 2009
Good evening. David had a busy morning today. He had PT in the pool. He really enjoys it in the pool. Today before he got out he went all the way under water. He said he forgot how good that felt to do that. Such a simple pleasure for him. He did really well.
Then he got dressed and we hopped on over to his orthodontist appointment. His teeth are looking good. The only bad thing is the chemo has discolored his teeth; but the orthodontist said he will bleach David's teeth when we are all done. That is really sweet of him, I know that is not cheap! He also said that we will try to get David's braces off for his birthday. Dr. D'Ascoli said that will be his birthday present to David. David's birthday is on Easter this year. His birthday was on Easter on his 4th birthday, too. So as long as David wears his rubber bands like he is supposed to, he could only have his braces on for two more months! He is only 4 months 'behind' treatment now. He is making progress, finally!
Then we had to go to Costco because we needed milk. We go through a LOT of milk. We went through 2 gallons in 3 days! So I had to go get some milk and bread. Then we came home and he did more schoolwork. So he had a busy morning.
He is still on the zofran, just not every day anymore. I give it to him when he has PT, but other days I just kinda play it by ear. If we have to go anywhere he gets the zofran; he has always been a child who gets carsick. But otherwise he is feeling pretty good.
In April, when he has scans, they will draw blood, again, and check B12 levels. They are also going to do his CT scan with contrast; the lung mets show up better with the contrast. Connie wants the CT with the contrast this time; remember, David is high risk. Anyway, that is what is going to happen.'Scanxiety' is starting to hit a little bit. I just have to not think about it, for now. But every time David coughs my heart ships a beat. I hate the fact that when he had 10 cancer lesions in his lungs he had no symptoms of it! His lungs could have more and we wouldn't know until we have the CT scan! Kinda scary, huh? Enough of that for now.
Well, that is about all that is going on here. Thank you for your prayers and love. Thank you for checking in on David. Keep checking up on him, and us. God bless you. We love you. <><
Kristi and the Koury Klan
Then he got dressed and we hopped on over to his orthodontist appointment. His teeth are looking good. The only bad thing is the chemo has discolored his teeth; but the orthodontist said he will bleach David's teeth when we are all done. That is really sweet of him, I know that is not cheap! He also said that we will try to get David's braces off for his birthday. Dr. D'Ascoli said that will be his birthday present to David. David's birthday is on Easter this year. His birthday was on Easter on his 4th birthday, too. So as long as David wears his rubber bands like he is supposed to, he could only have his braces on for two more months! He is only 4 months 'behind' treatment now. He is making progress, finally!
Then we had to go to Costco because we needed milk. We go through a LOT of milk. We went through 2 gallons in 3 days! So I had to go get some milk and bread. Then we came home and he did more schoolwork. So he had a busy morning.
He is still on the zofran, just not every day anymore. I give it to him when he has PT, but other days I just kinda play it by ear. If we have to go anywhere he gets the zofran; he has always been a child who gets carsick. But otherwise he is feeling pretty good.
In April, when he has scans, they will draw blood, again, and check B12 levels. They are also going to do his CT scan with contrast; the lung mets show up better with the contrast. Connie wants the CT with the contrast this time; remember, David is high risk. Anyway, that is what is going to happen.'Scanxiety' is starting to hit a little bit. I just have to not think about it, for now. But every time David coughs my heart ships a beat. I hate the fact that when he had 10 cancer lesions in his lungs he had no symptoms of it! His lungs could have more and we wouldn't know until we have the CT scan! Kinda scary, huh? Enough of that for now.
Well, that is about all that is going on here. Thank you for your prayers and love. Thank you for checking in on David. Keep checking up on him, and us. God bless you. We love you. <><
Kristi and the Koury Klan
Wednesday, February 11, 2009
Wednesday, February 11, 2009
Good afternoon. I hope you are having a good day.
It is beautiful here today. We woke up to snow this morning! The kind of morning you just want to snuggle down in bed. But.....no such luck. Oh well.
David is doing ok today. He did school, and then played games. He has PT in the pool tomorrow. Then he has to get dressed and we have to book on over to the orthodontist. Busy morning! Then he will come home and do school. It will be a busy day tomorrow.
We are so glad we are not where we were last year! When we think about where we were last year, and look at the pictures, it brings all the emotions and fear and everything back; like it was yesterday! Praise Jesus that David is doing soooooo much better now than he was then. This child has fought his way from death's door a few times! He is a real fighter. And we are so glad he is.
Well, not much is happening on the home front. We are supposed to have a few more storms between now and Sunday with more snow, yay! Thank you for checking in on David. Thank you again for your prayers and love. God bless you. We love you.
Kristi and the Koury Klan
It is beautiful here today. We woke up to snow this morning! The kind of morning you just want to snuggle down in bed. But.....no such luck. Oh well.
David is doing ok today. He did school, and then played games. He has PT in the pool tomorrow. Then he has to get dressed and we have to book on over to the orthodontist. Busy morning! Then he will come home and do school. It will be a busy day tomorrow.
We are so glad we are not where we were last year! When we think about where we were last year, and look at the pictures, it brings all the emotions and fear and everything back; like it was yesterday! Praise Jesus that David is doing soooooo much better now than he was then. This child has fought his way from death's door a few times! He is a real fighter. And we are so glad he is.
Well, not much is happening on the home front. We are supposed to have a few more storms between now and Sunday with more snow, yay! Thank you for checking in on David. Thank you again for your prayers and love. God bless you. We love you.
Kristi and the Koury Klan
Tuesday, February 10, 2009
Tuesday, February 10, 2009 7:49 AM
One year ago today David was finally on the road to recovery! One year ago today he had his emergency abdominal surgery and bowel resection. One year ago today he stopped dying and started to get better!! Wow! Such a long, yet fast year. I am so thankful to still have David with us (duh!). It was frustrating last year that he almost died, but not from the cancer! I just stopped in to post a quick update. Have a good day. God bless you all.
Kristi and the Koury Klan
Kristi and the Koury Klan
Monday, February 9, 2009
Monday, February 9, 2009 4:33 PM
Good afternoon. We just got back from David's physical therapy. He did fantastic today. He worked very hard. His quads are getting stronger, he is no longer using the crutch!! He still has a very pronounced limp; but that is because he is still uneven. But his leg is getting stronger. YAY!!
David had his oncology appointment today, too. That went well. Connie is very pleased with his progress. The plan is that he is to have scans every 3 months for a year. Then the protocol calls for scans every 6 months for 2 years. After the year of scans every 3 months, David will have them every 4 months (instead of 6) because he is 'high risk.' So for the next three years we will be spending a LOT of time going to Children's Hospital for scans! But they need to be especially pro-active with David. Not only is he classified as 'high risk,' he is also our curve-ball thrower! We found that out a year ago. I am glad they are going to be pro-active and aggressive with him. Osteosarcoma is a very aggressive cancer to begin with; and it was very aggressive and chemo-resistant (for a while) in David. We want to make sure we know what is happening in him, and nip it in the bud if anything shows up! So that is our game plan, for now.
Our weather is gorgeous today. We woke up to snow, and it has snowed off and on all day. It just doesn't get much prettier! It is cold, but we are toasty warm in our house.
Please remember Rachel in your prayers. A co-worker of hers, named Sandy, died in her sleep Thursday night/Friday morning. This woman was only 56 years old. Please pray for Sandy's family, too. Rachel said everyone at work is pretty subdued. Such a shock. Thank you.
Well, that is about all that is going on today. Thank you for checking in on David. Thank you for your prayers and love. Chris and Pastor Larry; I sure hope you are able to come out here this summer! We miss you so much! You are so important to us; you (Pastor Larry) dedicated David when he was only 4 weeks old, remember?!?! Well, you all have a good evening. Thanks again for all your prayers, keep them coming!! God bless you all. We love you. ((HUGS))
Kristi and the Koury Klan
David had his oncology appointment today, too. That went well. Connie is very pleased with his progress. The plan is that he is to have scans every 3 months for a year. Then the protocol calls for scans every 6 months for 2 years. After the year of scans every 3 months, David will have them every 4 months (instead of 6) because he is 'high risk.' So for the next three years we will be spending a LOT of time going to Children's Hospital for scans! But they need to be especially pro-active with David. Not only is he classified as 'high risk,' he is also our curve-ball thrower! We found that out a year ago. I am glad they are going to be pro-active and aggressive with him. Osteosarcoma is a very aggressive cancer to begin with; and it was very aggressive and chemo-resistant (for a while) in David. We want to make sure we know what is happening in him, and nip it in the bud if anything shows up! So that is our game plan, for now.
Our weather is gorgeous today. We woke up to snow, and it has snowed off and on all day. It just doesn't get much prettier! It is cold, but we are toasty warm in our house.
Please remember Rachel in your prayers. A co-worker of hers, named Sandy, died in her sleep Thursday night/Friday morning. This woman was only 56 years old. Please pray for Sandy's family, too. Rachel said everyone at work is pretty subdued. Such a shock. Thank you.
Well, that is about all that is going on today. Thank you for checking in on David. Thank you for your prayers and love. Chris and Pastor Larry; I sure hope you are able to come out here this summer! We miss you so much! You are so important to us; you (Pastor Larry) dedicated David when he was only 4 weeks old, remember?!?! Well, you all have a good evening. Thanks again for all your prayers, keep them coming!! God bless you all. We love you. ((HUGS))
Kristi and the Koury Klan
Sunday, February 8, 2009
Sunday, February 8, 2009 5:49 PM
Good evening. Sorry I haven't posted lately. Things here are going ok. It snowed yesterday, so David was happy about that. Today has been cloudy and cold; and beautiful!! It is supposed to snow tonight. The high tomorrow is only going to be 34*!! We are happy, we like the cold.
Tomorrow David has his doctor appointment in Reno (at Renown). Then he has PT in the afternoon. Tomorrow will be a busy day.
This time last year, for those who remember, David was dying and no one knew why. I remember that day (well, those 2 weeks at UCSF) like it was yesterday. David was throwing up green bile, passing blood, and dying and they couldn't tell us why. They had no idea. He ended up having an intussusception; something they were NOT looking for. They weren't looking for something that does NOT happen to 13-year-old kids. Go back to my posts from February 4, 2008-Feb. 11 (or so), 2008. We still can't believe all David went through during that time. I posted some pictures of him during that time. His lips are green in those pictures because of the bile he kept throwing up. I can't even describe how sick he really was. I am so glad those days are behind us. I am so glad he is doing so much better now. Thank you, Jesus!
Please pray for some other osteo warriors who are struggling right now. Two that are having relapses and struggles are Sammie and Shane. Thank you for your prayers.
Well, that is about all that is happening here right now. Thank you for checking in on David. Thank you for your prayers and love. Thank you for always being there. God bless you. We love you.
Kristi and the Koury Klan
Tomorrow David has his doctor appointment in Reno (at Renown). Then he has PT in the afternoon. Tomorrow will be a busy day.
This time last year, for those who remember, David was dying and no one knew why. I remember that day (well, those 2 weeks at UCSF) like it was yesterday. David was throwing up green bile, passing blood, and dying and they couldn't tell us why. They had no idea. He ended up having an intussusception; something they were NOT looking for. They weren't looking for something that does NOT happen to 13-year-old kids. Go back to my posts from February 4, 2008-Feb. 11 (or so), 2008. We still can't believe all David went through during that time. I posted some pictures of him during that time. His lips are green in those pictures because of the bile he kept throwing up. I can't even describe how sick he really was. I am so glad those days are behind us. I am so glad he is doing so much better now. Thank you, Jesus!
Please pray for some other osteo warriors who are struggling right now. Two that are having relapses and struggles are Sammie and Shane. Thank you for your prayers.
Well, that is about all that is happening here right now. Thank you for checking in on David. Thank you for your prayers and love. Thank you for always being there. God bless you. We love you.
Kristi and the Koury Klan
Thursday, February 5, 2009
Thursday, February 5, 2009 8:30 PM
Another osteo warrior lost his battle today. Please pray for his family. His name was Ryan. Thank you. Sorry, feeling kinda depressed today.
Kristi and the Koury Klan
Kristi and the Koury Klan
Wednesday, February 4, 2009
Wednesday, February 4, 2009 7:36 PM
Good evening. They are calling for snow in the next couple of days! Woo-Hoo!! Oh, and rain, too. And highs in the low-mid 40's. Finally. You know, David and I love the snow, and last year we had a LOT of snow and we weren't here to enjoy it. And this year.............very lacking in the snow category. *sigh* That is so the way it goes, huh? It just figures. Oh well. Maybe next year. We are thankful that we had a white Christmas.
We are all feeling a little nostalgic today. It has been a long, long year. Looking back, it doesn't seem like it has been a year since David's limb-salvage surgery; and yet, it seems like a lifetime ago. Yesterday, and a lifetime ago, all at the same time! I am not sure that makes sense, but it does to me! That was such a long day, and it is a day we will NEVER forget!! This whole nightmare is one we will never forget!! Partly because we can never wake up from it. We live it every single day~~~and will forever.
David has PT tomorrow in the pool. He is kinda looking forward to it. He likes going in the pool, and he works really hard when he is there. I wasn't able to find him a swimsuit; but I was able to find gym-type shorts, so that will work fine.
Well, that is about all for today. Check out all the new pictures. I will update those again later~~to show you what he went through a year ago. Today is the limb-salvage pictures. Thank you for checking in on David. Thank you for your love and prayers. God bless you all. We love you.
Kristi and the Koury Klan
We are all feeling a little nostalgic today. It has been a long, long year. Looking back, it doesn't seem like it has been a year since David's limb-salvage surgery; and yet, it seems like a lifetime ago. Yesterday, and a lifetime ago, all at the same time! I am not sure that makes sense, but it does to me! That was such a long day, and it is a day we will NEVER forget!! This whole nightmare is one we will never forget!! Partly because we can never wake up from it. We live it every single day~~~and will forever.
David has PT tomorrow in the pool. He is kinda looking forward to it. He likes going in the pool, and he works really hard when he is there. I wasn't able to find him a swimsuit; but I was able to find gym-type shorts, so that will work fine.
Well, that is about all for today. Check out all the new pictures. I will update those again later~~to show you what he went through a year ago. Today is the limb-salvage pictures. Thank you for checking in on David. Thank you for your love and prayers. God bless you all. We love you.
Kristi and the Koury Klan
Tuesday, February 3, 2009
Tuesday, February 3, 2009 8:40 PM
Good evening. I hope this evening finds everyone doing well.
It was another beautiful day here in Carson City. But................we hear there are some storms coming our way soon!! Woo-Hoo!! We need the moisture really badly. But today was so beautiful that I was able to use my clothesline to dry some clothes. They didn't get totally dry, it wasn't that warm, but it still helped. It was breezy (as always), so they did get pretty dry. I didn't have to put them in the dryer for very long, so that helps with the electricity bill! Every little bit helps.
David is doing ok. I did give him the zofran today. He is feeling ok, just still not 100%. But we are getting there. He did PT at home yesterday. He did the Total Trainer (like the Total Gym that Chuck Norris advertises, but 1/4 the price), and he did the treadmill. He walks on the treadmill 10 minutes front wards and 10 minutes backwards. Linda said that walking backwards will help strengthen the quads. So he is doing PT at home, too. He is trying very hard, he is such a trooper. He just is very stiff in the mornings, and when he has been sitting for a while~~~~like doing school. But he is making good progress.
We got the itemized statement for David's hospital bill for his leg-lengthening surgery. Another $13,000 off our lifetime cap! And that is just the hospital bill!! And we will be doing this in another 5 months! *sigh* We gotta do what we gotta do!
One year ago today we were in San Francisco preparing David for his life-altering surgery. Around this time we were probably getting ready for bed since we had to be at the hospital at 6:00 in the morning! It was still dark! We had to make sure David was all showered and had his last snack before he couldn't eat anymore. He didn't eat that much anyway, he was scared. Wow! This year has been a horrible year, but we have made it through. Thank you, Jesus! We would never have made it this far without God. I honestly don't see how people do this without God; it is hard enough to do with God!!
We just learned of another osteo warrior who died a few days ago. Please pray for her family. Her name was Janet and she was one of the rare adults with osteo. She was married and had 4 children. I know her family needs your prayers. Thank you.
Hey, Bob, David is looking forward to going fishing with you this year. He can't wait until you teach him to fly fish with that great pole you got him. Just thought you would like to know that.
Well, that is about all I can think of for now. Thank you for all your prayers and love. Thank you for checking in on David. Thank you for writing in the guestbook. Have a great evening. God bless you all. We love you.
Kristi and the Koury Klan
It was another beautiful day here in Carson City. But................we hear there are some storms coming our way soon!! Woo-Hoo!! We need the moisture really badly. But today was so beautiful that I was able to use my clothesline to dry some clothes. They didn't get totally dry, it wasn't that warm, but it still helped. It was breezy (as always), so they did get pretty dry. I didn't have to put them in the dryer for very long, so that helps with the electricity bill! Every little bit helps.
David is doing ok. I did give him the zofran today. He is feeling ok, just still not 100%. But we are getting there. He did PT at home yesterday. He did the Total Trainer (like the Total Gym that Chuck Norris advertises, but 1/4 the price), and he did the treadmill. He walks on the treadmill 10 minutes front wards and 10 minutes backwards. Linda said that walking backwards will help strengthen the quads. So he is doing PT at home, too. He is trying very hard, he is such a trooper. He just is very stiff in the mornings, and when he has been sitting for a while~~~~like doing school. But he is making good progress.
We got the itemized statement for David's hospital bill for his leg-lengthening surgery. Another $13,000 off our lifetime cap! And that is just the hospital bill!! And we will be doing this in another 5 months! *sigh* We gotta do what we gotta do!
One year ago today we were in San Francisco preparing David for his life-altering surgery. Around this time we were probably getting ready for bed since we had to be at the hospital at 6:00 in the morning! It was still dark! We had to make sure David was all showered and had his last snack before he couldn't eat anymore. He didn't eat that much anyway, he was scared. Wow! This year has been a horrible year, but we have made it through. Thank you, Jesus! We would never have made it this far without God. I honestly don't see how people do this without God; it is hard enough to do with God!!
We just learned of another osteo warrior who died a few days ago. Please pray for her family. Her name was Janet and she was one of the rare adults with osteo. She was married and had 4 children. I know her family needs your prayers. Thank you.
Hey, Bob, David is looking forward to going fishing with you this year. He can't wait until you teach him to fly fish with that great pole you got him. Just thought you would like to know that.
Well, that is about all I can think of for now. Thank you for all your prayers and love. Thank you for checking in on David. Thank you for writing in the guestbook. Have a great evening. God bless you all. We love you.
Kristi and the Koury Klan
Sunday, February 1, 2009
Sunday, February 1, 2009 9:47 PM
Good evening. It was a beautiful day here today.
Yesterday was a busy day. Bryon and I donated blood in the morning. Then in the afternoon we got some more firewood~~~thanks Alan and crew! We really needed the wood. They guys did a 'bucket brigade' and they had the wood stacked in no time. Then we had to do a little bit of shopping, not too much, it isn't payday. But I have to have milk in the house!
Bryon's team (well, the one he was rooting for) lost the Super Bowl, sad. But at least the Cardinals made the Steelers work for their win! Oh well. It was sad; Bryon really likes Kurt Warner. He has liked him since he played for the Rams! Anyway, my husband was not in a good mood after the game.
David is doing a little bit better. I didn't give him the zofran today, and he didn't get as nauseous today; YAY!! He didn't eat like we want him to, but that is ok. He sometimes has 'off' days and doesn't eat as much. But he is holding his own with his weight, so that is good. His PT is going well. He will be going to the pool again on Thursday, and he is looking forward to that. I need to get him a swimsuit before Thursday. I hope I can find one in February! He is still limping, but at least he is walking. We have pretty much 'retired' his wheelchair; so now we can't wait to retire the cane and the crutches. I know, in time. It will happen. It has been almost a year since his limb-salvage surgery. Last year we watched the Super Bowl in a hotel in San Francisco~~David's surgery was the next morning (surgery was Feb.4). Wow. What a difference a year can make; good and bad! I am glad that year is behind us, and I pray that we never have to go through another one like it. I pray David NEVER has a relapse! Please join me in that prayer! Thank you so much.
Well, that is about all that is happening. Thank you for visiting this site and checking in on David. If you saw the other site, you will see the pictures of David as he was dying and we didn't know why. Again, what a difference a year makes! Have a good evening. Keep checking back. God bless you all. We love you.
Kristi and the Koury Klan
Yesterday was a busy day. Bryon and I donated blood in the morning. Then in the afternoon we got some more firewood~~~thanks Alan and crew! We really needed the wood. They guys did a 'bucket brigade' and they had the wood stacked in no time. Then we had to do a little bit of shopping, not too much, it isn't payday. But I have to have milk in the house!
Bryon's team (well, the one he was rooting for) lost the Super Bowl, sad. But at least the Cardinals made the Steelers work for their win! Oh well. It was sad; Bryon really likes Kurt Warner. He has liked him since he played for the Rams! Anyway, my husband was not in a good mood after the game.
David is doing a little bit better. I didn't give him the zofran today, and he didn't get as nauseous today; YAY!! He didn't eat like we want him to, but that is ok. He sometimes has 'off' days and doesn't eat as much. But he is holding his own with his weight, so that is good. His PT is going well. He will be going to the pool again on Thursday, and he is looking forward to that. I need to get him a swimsuit before Thursday. I hope I can find one in February! He is still limping, but at least he is walking. We have pretty much 'retired' his wheelchair; so now we can't wait to retire the cane and the crutches. I know, in time. It will happen. It has been almost a year since his limb-salvage surgery. Last year we watched the Super Bowl in a hotel in San Francisco~~David's surgery was the next morning (surgery was Feb.4). Wow. What a difference a year can make; good and bad! I am glad that year is behind us, and I pray that we never have to go through another one like it. I pray David NEVER has a relapse! Please join me in that prayer! Thank you so much.
Well, that is about all that is happening. Thank you for visiting this site and checking in on David. If you saw the other site, you will see the pictures of David as he was dying and we didn't know why. Again, what a difference a year makes! Have a good evening. Keep checking back. God bless you all. We love you.
Kristi and the Koury Klan
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