MONDAY, JANUARY 12, 2009 07:58 PM, CST
I forgot to let everyone know that soon, I will graduate from medical school! :) Not only have I drawn blood from his line, flushed his line and changed the dressing but now we're giving him Neupagen shots twice a day to boost his ANC. That is definitely not fun. Tyler has gotten pretty used to it now. He cries when he feels the poke but then as soon as you take the needle out he pretty much stops fussing. He starts clapping because he knows he does such a good job. :)
Kristine
Wednesday, January 14, 2009
MONDAY, JANUARY 12, 2009 07:42 PM, CST
Well I'm finally back at a computer so I can update you on what's been going on. It's been a very busy 5 days or so. Last Thursday and Friday I took Tyler to Kootenai Medical Center for routine blood work. Saturday and Sunday I took him to Sacred Heart for more blood work but each day we got to leave so thats good!
Today they started his stem cell collection. The blood work leading up to today has been to figure out when they could start it. One of the tests is to look for a "cell marker" called CD34. They needed the count to be at least 10 before they could start. The test Saturday showed it was at 5.9. The nurse from the blood bank said by yesterday it should be at 10 but instead it was at 34! The higher the number the better but they have to grab the stem cells before that number starts going back down which can be anytime. That's why as soon as it got to 10 they wanted to harvest it. Praise God it was so high! The harvest took about 3 1/2 hours. Tyler did very well. They were able to take it from his central line instead of putting a catheter in his groin. I'm sure Tyler was pretty happy about that. :) They gave him sedation but of course it didn't work. He is very stubborn when it comes to being put under! It did seem to calm him down a little so they just had me hold him on my lap until they were done. They didn't get enough of what they need today so we have to go back again tomorrow morning for one more harvest. When it's done, they'll check his blood counts like they did today to see if he needs a red blood cell transfusion. The stem cell harvest destroys a lot of red blood cells. His ANC is really good though. It went from 20 to 2640 in about 4 days.
He starts his next round of chemo on January 19th. They will do a scan and bone marrow testing on the 19th and 20th to see if the chemo is working. I am very, very nervous for those results but I'm trying to trust God. He knows what He's doing.
Tyler climbed a couple stairs at my aunt's house and was able to put his hands on the 2nd step to stand up. I was shocked! I haven't seen him stand up by himself since early to mid November. I hope that's a sign that the chemo is working!
Please pray for his results on the 19th and 20th. Also, please continue to pray for the other kids on the floor. A few of them are having several side effects and complications from the chemo. I hope not as much time passes between this entry and my next one. I'll try to be more on top of it!
Kristine
Well I'm finally back at a computer so I can update you on what's been going on. It's been a very busy 5 days or so. Last Thursday and Friday I took Tyler to Kootenai Medical Center for routine blood work. Saturday and Sunday I took him to Sacred Heart for more blood work but each day we got to leave so thats good!
Today they started his stem cell collection. The blood work leading up to today has been to figure out when they could start it. One of the tests is to look for a "cell marker" called CD34. They needed the count to be at least 10 before they could start. The test Saturday showed it was at 5.9. The nurse from the blood bank said by yesterday it should be at 10 but instead it was at 34! The higher the number the better but they have to grab the stem cells before that number starts going back down which can be anytime. That's why as soon as it got to 10 they wanted to harvest it. Praise God it was so high! The harvest took about 3 1/2 hours. Tyler did very well. They were able to take it from his central line instead of putting a catheter in his groin. I'm sure Tyler was pretty happy about that. :) They gave him sedation but of course it didn't work. He is very stubborn when it comes to being put under! It did seem to calm him down a little so they just had me hold him on my lap until they were done. They didn't get enough of what they need today so we have to go back again tomorrow morning for one more harvest. When it's done, they'll check his blood counts like they did today to see if he needs a red blood cell transfusion. The stem cell harvest destroys a lot of red blood cells. His ANC is really good though. It went from 20 to 2640 in about 4 days.
He starts his next round of chemo on January 19th. They will do a scan and bone marrow testing on the 19th and 20th to see if the chemo is working. I am very, very nervous for those results but I'm trying to trust God. He knows what He's doing.
Tyler climbed a couple stairs at my aunt's house and was able to put his hands on the 2nd step to stand up. I was shocked! I haven't seen him stand up by himself since early to mid November. I hope that's a sign that the chemo is working!
Please pray for his results on the 19th and 20th. Also, please continue to pray for the other kids on the floor. A few of them are having several side effects and complications from the chemo. I hope not as much time passes between this entry and my next one. I'll try to be more on top of it!
Kristine
Thursday, January 1, 2009
Well we got checked back into the hospital on Tuesday and things have gone very well the last couple of days. Tyler's only gotten sick once from the chemo. With the way he's been acting, you'd never know what he's going through. He's going on with life as usual.
Things have been fairly quiet today. Tyler has gotten out in the halls quite a bit. I took him in one of the little ride on cars and then when Grammy and Papa got here, they took him out too. He had been in a really good mood but decided to change that when they got here. He was super tired but wouldn't go to sleep! He was too excited to see them. :) Grampy and Grams are here visiting right now so of course he fell asleep! Little stinker.The dr. talked to us earlier. She said because he's starting this round of chemo with better levels than he did with the last round, we might be able to leave on the day of his last dose of chemo which would be Saturday. That would be nice! His counts have come down since we've been here but they're still good. We'll just have to keep an eye on them and hope he doesn't get that rash again! In a little under 2 weeks, they will be collecting his stem cells to see if they can "clean" it and re-use it when it comes time for his bone marrow transplant. It's been explained to us that a bone marrow transplant is also known as a stem cell transplant. They put a catheter in his groin area then take the blood and put it in a centrifuge which separates the cells they need from other blood components and plasma. The things they don't need will be returned back to him through the catheter. This process may need to be repeated over several days so they can get enough of what they need.
A few days ago the dr. gave me a "map" of Tyler's treatment process which showed the stem cell harvest being sometime between next week and the 19th. It also showed the surgery to remove the main tumor being scheduled for the middle of March. Of course, they will need to do a scan and some testing first to make sure the chemo is actually working and shrinking the tumors. That testing will probably be around the same time as the stem cell harvesting. I am so scared for the results of those tests. I am still praying for a miracle. Praying that all the tumors will be completely gone and his bone marrow will be clean! The scan will also determine if the surgeons feel confident in doing the surgery here or if it'll have to be done in Seattle. If it is done in Seattle, we will be coming home afterwards to complete his chemo here in Spokane then heading back around May for the transplant if all goes according to plan. I'm not totally sure how long he'll be in Seattle. Some of it depends on if we want to take part in a bone marrow transplant study. In the study, he would have 2 or 3 transplants instead of 1 which would extend our stay. We haven't gone over all the specifics of the study yet to know which direction to take.
As things change I will keep you all updated.
Kristine
Things have been fairly quiet today. Tyler has gotten out in the halls quite a bit. I took him in one of the little ride on cars and then when Grammy and Papa got here, they took him out too. He had been in a really good mood but decided to change that when they got here. He was super tired but wouldn't go to sleep! He was too excited to see them. :) Grampy and Grams are here visiting right now so of course he fell asleep! Little stinker.The dr. talked to us earlier. She said because he's starting this round of chemo with better levels than he did with the last round, we might be able to leave on the day of his last dose of chemo which would be Saturday. That would be nice! His counts have come down since we've been here but they're still good. We'll just have to keep an eye on them and hope he doesn't get that rash again! In a little under 2 weeks, they will be collecting his stem cells to see if they can "clean" it and re-use it when it comes time for his bone marrow transplant. It's been explained to us that a bone marrow transplant is also known as a stem cell transplant. They put a catheter in his groin area then take the blood and put it in a centrifuge which separates the cells they need from other blood components and plasma. The things they don't need will be returned back to him through the catheter. This process may need to be repeated over several days so they can get enough of what they need.
A few days ago the dr. gave me a "map" of Tyler's treatment process which showed the stem cell harvest being sometime between next week and the 19th. It also showed the surgery to remove the main tumor being scheduled for the middle of March. Of course, they will need to do a scan and some testing first to make sure the chemo is actually working and shrinking the tumors. That testing will probably be around the same time as the stem cell harvesting. I am so scared for the results of those tests. I am still praying for a miracle. Praying that all the tumors will be completely gone and his bone marrow will be clean! The scan will also determine if the surgeons feel confident in doing the surgery here or if it'll have to be done in Seattle. If it is done in Seattle, we will be coming home afterwards to complete his chemo here in Spokane then heading back around May for the transplant if all goes according to plan. I'm not totally sure how long he'll be in Seattle. Some of it depends on if we want to take part in a bone marrow transplant study. In the study, he would have 2 or 3 transplants instead of 1 which would extend our stay. We haven't gone over all the specifics of the study yet to know which direction to take.
As things change I will keep you all updated.
Kristine
Sunday, December 28, 2008
Hello again!
We have been out of the hospital since Saturday December 20th but Tyler and I didn't come home we are staying at my aunt's house in Hayden Lake. Jason has been sick so Ty have only seen him for about 1 1/2 hours in the last week. We have to go back to the hospital on Tuesday. That's when Tyler starts his next treatment. It will last 5 days then we just have to wait for his blood levels to stabablize again before we can come back home.
Tyler has been doing very well since we left the hospital. He's very happy and plays all the time. He's also crawling around a lot more which is nice to see. He hasn't regained all the strength in his legs yet but he will with time.
Thank you again for all your continued prayers and support. God bless you.
Kristine
We have been out of the hospital since Saturday December 20th but Tyler and I didn't come home we are staying at my aunt's house in Hayden Lake. Jason has been sick so Ty have only seen him for about 1 1/2 hours in the last week. We have to go back to the hospital on Tuesday. That's when Tyler starts his next treatment. It will last 5 days then we just have to wait for his blood levels to stabablize again before we can come back home.
Tyler has been doing very well since we left the hospital. He's very happy and plays all the time. He's also crawling around a lot more which is nice to see. He hasn't regained all the strength in his legs yet but he will with time.
Thank you again for all your continued prayers and support. God bless you.
Kristine
Thursday, December 18, 2008
Hi everyone! I'm sorry I haven't updated you in a while. I have a website at http://www.caringbridge.org/ that I update at least once a day so I've been kind of busy with that. Some good news to report! Tyler started crawling again yesterday! He hadn't crawled since before we came here. He doesn't quite have all his strength back so crawling is slow and a little labored but at least he's doing it. I was very relieved! Also, the dr. is going to try and get us home on Saturday! If his blood levels and platelets stabalize, we should be able to leave. Tyler hasn't had much of an appetite so they may have to send us home with some TPN (Total Parenteral Nutrition) to put through the central line in his chest. He's only been meeting 25-30% of his required daily caloric intake. :( I pray that his appetite will return before we leave so we don't have to give him food through a tube. His ANC, which is basically his white blood count, went from 105 yesterday to 740 today! He only needed to be at 500 in order to go home. His platelet count is holding steady at 18. It needs to be at 50 before we can leave. Lastly, his red blood count was at 29.7 after his blood transfusion yesterday but is down to 27 today. The dr. would also like to see that count stabalize before going home. Even if we just get to go home before Christmas Eve I'll be happy.
Tyler has been in very good spirits. He cracks everyone up! He is such a flirt with the nurses! He blows them kisses all the time which of course they love. It's pretty adorable. I love when he blows me kisses out of the blue without being prompted. He is such a sweet boy. He's had one nurse named Joe that Tyler likes to take jabs at...or maybe Jason just likes to take jabs at. Joe is a big San Diego Chargers fan and, of course, Tyler is a huge Denver Broncos fan! One day Tyler (aka Jason) put Tyler's Champ Bailey jersey on one of his stuffed dogs and put it on Joe's computer. Needless to say, Joe took that as Tyler throwing the first punch so it was on from there! :)
I will update you as Tyler's treatment continues. If you'd like to visit the caringbridge website, you just need to put tylercordle where it says Enter Website Name. Thank you all so, so much for your prayers. We appreciate every single one of them and we are praying for a miracle.
Kristine
Tyler has been in very good spirits. He cracks everyone up! He is such a flirt with the nurses! He blows them kisses all the time which of course they love. It's pretty adorable. I love when he blows me kisses out of the blue without being prompted. He is such a sweet boy. He's had one nurse named Joe that Tyler likes to take jabs at...or maybe Jason just likes to take jabs at. Joe is a big San Diego Chargers fan and, of course, Tyler is a huge Denver Broncos fan! One day Tyler (aka Jason) put Tyler's Champ Bailey jersey on one of his stuffed dogs and put it on Joe's computer. Needless to say, Joe took that as Tyler throwing the first punch so it was on from there! :)
I will update you as Tyler's treatment continues. If you'd like to visit the caringbridge website, you just need to put tylercordle where it says Enter Website Name. Thank you all so, so much for your prayers. We appreciate every single one of them and we are praying for a miracle.
Kristine
Monday, December 15, 2008
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