Wednesday, February 11, 2009

Hey everyone. We checked back into the hospital yesterday for Tyler's 4th round of chemo. So far, so good. This time he's hooked up to chemo the whole time we're here. Poor guy. He doesn't get to be unhooked at all until Friday. I don't think he realizes he's connected all the time though. He's constantly getting tangled in his line because he moves around so much.
Last night was a late night! Tyler usually goes to bed around 8:30 and has at least one long nap a day. Yesterday, he only had a 45 minute nap. I layed him down for bed at 8:00...at 10:00 he was still very much wide awake and the most hyper I've ever seen him that late at night! He was standing up in his crib, stomping his feet, shaking his head back and forth and yelling! After a nice little dose of Benadryl, he went right to sleep. He was definitely feeling the effects of a late night because he already took almost a two hour nap around 10:45 today.
They're scheduling surgery to remove his tumor around March 19th or 20th. Looks like we're heading to Seattle around the end of April and his transplant will be the beginning of May. So far, that's all the info we have. The hospital gave us a list of extended stay apartments, hotels, condos, etc to look through. Now we just have to decide which one is best for us. I wish I could see the neighborhoods they're in before we make a choice! I went online and looked at some of the places. They seemed pretty nice. Rent in Seattle is a lot more expensive than I'm used to seeing! I think it'll be a really fun adventure though...once we get through the tough parts.
Well, we're hoping to be out of here on Friday if all goes well. Keep your fingers crossed! Actually, that's never been of much luck to me. :)
Kristine

Thursday, January 22, 2009

THURSDAY, JANUARY 22, 2009 11:14 AM, CST
And the good news keeps coming!
Dr. Trobaugh said Tyler's MIBG scan results show that the only tumor left is the one in his abdomen which means the two that were in his leg are gone! The spots in his leg that were showing on the bone scan is just scar tissue left from the tumors. This is just so amazing! The dr. was saying that his results are incredible. We will get the bone marrow results back in about a week. They saw a cluster of cells under the microscope but she said that could just be normal cells. Even if there are still cancer cells in his bone marrow, she said it's nothing like it was. We knew God could do a miracle and He definitley has!
Kristine

Tuesday, January 20, 2009

TUESDAY, JANUARY 20, 2009 02:04 PM, CST
GOOD NEWS!!
So the Dr. just visited and was showing us the results of the bone and CT scan from yesterday. She was comparing the difference between the very first scan done when he first was diagnosed and the ones completed yesterday. She cautioned not to be disappointed if there is no difference between the two, she said that is not unusual so.........
Here are the results
1. Remember there were two spots in his head? Well they have completely resolved.
2. The two spots that were on his legs have decreased in size. They will know exactly how much when he completes his MRBG scan tomorrow.
3. The main tumor on his kidney has decreased in size by more then half,
4. Oh....and the spot on his chest wall? Its gone to!
Can you believe that?
They should know more tomorrow so stay tuned.
Thanks so much for all the prayers and thank you God!

Monday, January 19, 2009


I think Tyler likes his new haircut.
Mom isn't brushing his hair constantly anymore!

Wednesday, January 14, 2009



Tyler is showing off the hat one of the mom's at the hospital made him. Of course, his best friend is in tow! He loves his puppy!
TUESDAY, JANUARY 13, 2009 09:31 PM, CST
More great news! His stem cell harvest went so well today that the nurse said they got enough for a couple transplants! Originally they only needed a count of 10. Yesterday they got 7.7 and today they got 20! This is great because if we decide to participate in the transplant study, Tyler will have at least 2 transplants. Of course the sedative didn't work again today. He was a lot more figity than yesterday which interferes with the amount of stem cells they're able to collect so I was very surprised to hear the number they got.
Now we don't have to go back until Monday January 19th so we'll have about 5 days at home. Aaaahhhh...how nice.
This Saturday is Tyler's benefit at the Bonner County Fairgrounds. I can't take Tyler and so far everyone we know will be at the benefit :) Tyler took several steps today while I held his hands. He protested a little but at least he did it! That was encouraging.
Talk to you later!
Kristine
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
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

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