Monday, April 30, 2007 - Post Transplant Day 17
As of Sunday, Shaylor's white cell count is up to .6, however, he has started running a slight fever and developed an uncomfortable rash. These are both normal side effects of the grafting, but we were hoping that he would not have to endure these "normal" side effects.
We will try to update again after talking to the doctor today or tomorrow.
Friday, April 27, 2007 - Post Transplant Day 14
Good news today!!! Dr. Anderson just came in and said that Shaylor is beginning to engraft. His white count was .1 on Wednesday, .2 on Thursday and .3 today so this indicates a trend which the doc says is indicative of engraftment.
So we are cautiously optimistic that Shaylor is on the road to making white cells with his new bone marrow.
His mouth and throat are still sore, but this should improve as the white cells increase.
Dr. Anderson says that everything things looks good right now.
Shaylor walked 2 miles on Thursday and has already finished 3 laps today.
Love to all,
Shaylor and Syndi
Tuesday, April 24, 2007 - Post Transplant Day 11
The last few days have not been as easy as the first few following the transplant. Late last week, he began developing the sore throat and mouth sores about which we had been warned. By Saturday, he was experiencing significant pain in swallowing. They have now provided him with a suction device (similar to what the dentist uses) and IV pain meds. He has a PCA pump which allows him to self administer pain meds (Dilaudid) as often as every 20 minutes if needed.
When I arrived back in Houston on Monday, the drugs had made him very loopy. I won't embarrass him by writing some of the things he told me, but rest assured if I had taped some of this, I feel certain some of his friends (and brothers) would pay good $$ and he would probably pay even better!!!
He is sleeping most of the day, but in very short bursts. Yesterday, his sleep was very frequently interrupted by vivid dreams/hallucinations. We spoke with the nurse, and the doctor authorized a reduction in the dosage of the steady drip Dilaudid while maintaining the dosage on the self administered pump. The hallucinations seem to be reduced today, but the pain is a little worse. So, he must choose between pain relief and hallucinations.
He is still able to get out of bed unassisted and walked a total of 5 laps on Monday, and has accomplished 3 today. Each 5 laps makes a mile - so that is still really good all things considered. We wil try to get another 2 laps today. He has been a real trooper about forcing himself to walk even when he really does not feel like it. But every medical staff person we have talked to tells him that walking (and more specifically getting out of bed) is one of the best things for his recovery.
He has experienced more nausea today than in the recent past, but has been able to keep from getting sick which would be extremely painful given how sore his throat is. He ordered one Boost supplement today, but when it arrived, he would not drink it - afraid it might come back up. He is resting now, but we will try to get some more nausea medicine from the nurse soon, and see if he can get at least one Boost in today.
The doctor is not concerned about his lack of fluid and nutrition intake during this time. They are giving him sufficient fluids, some of which he is retaining, and will provide IV nutrition if necessary.
All of these things are considered very normal. The medical team expects these things to happen and is very diligent in watching for signs of anything unusual. When the doctor came in today, his primary question for Shaylor was, "Is there anything we can do you for?" (Yes, he is foreign). The nurse frequently asks the same question although in the correct form!
Week before last, he had one nurse that was a bit "different". We were hopeful that the nurses in this unit would be the creme of the crop as BMT patients can become critical very fast, and are typically here for the long haul. So far, with the one exception, we have found the nurses to be great.
By the end of this week, the new marrow should begin to engraft which will cause his white cell count to begin going up. He had a slight increase from .1 to .2 on Monday, but they warned that it could go back down before it really started the ascension to "normal". And they were right, he is back to .1 today. So we continue to watch him closely, monitoring for infection and waiting patiently for when those new cells decide they can take up residence!!
Thank you to all who have sent cards, emails, CD/DVD's, etc.
With my little brother as he continues to fight......our love to all,
Syndi
Tuesday, April 17, 2007 - Post Transplant Day 4
HAPPY BIRTHDAY TO SHAYLOR!!. On Friday evening, April 13th, Shaylor's new bone marrow arrived at MDA about Once processing was complete, the infusion began around and continued until about Saturday morning. MDA celebrates all marrow transplants as the recipient's new birthday!. They hung a "Happy Birthday" banner in his room. I have posted new pictures. The large bag of red liquid is the new bone marrow.
Shaylor's donor is a 21 year old male. For the first year following the transplant, Shaylor (and the family) are allowed to communicate with him, but only in general terms (no direct name references, locations, etc). Following the first year, if the donor and recipient both agree, all information may be disclosed. For now, Shaylor, Jeanne and Ashlynn have written letters to the donor. Shaylor is hopeful that the donor will be willing to join him in very nice steak dinner next year!!
Jeanne, JD, Mel and Dad were here for the infusion. On Saturday, Shaylor was tired and slept most of the day. On Sunday, he didn't feel very well but by Monday he was feeling better again - still not fantastic, but all things considered......
He still walks around the floor 2-3 times a day. On Monday, he made a total of 9 laps which is almost 2 miles for the day. We are going to attempt to get 10 laps today and claim a 2 mile victory.
Now we are waiting for the new cells to "graft" which should be in 7-28 days and will be evident by the increase in his white cell count.
Thanks for your continued prayers and support!!
Syndi
Wednesday, April 11, 2007
Shaylor was admitted to the hospital last Thursday evening. He received total body radiation for 4 days from Friday through Monday. Yesterday was a bit of a difficult day. He started the day with heavy chemo, then another radiation treatment on the elbow only, and finally an anti-rejection drug referred to as ATG.
ATG is made from a rabbit protein and is therefore not very well accepted by the human body. He had some chills and fever last night, but today has seemed to tolerate the ATG a little better. He will have his last dose tomorrow.
Some part of this process has destroyed his taste buds, and he is beginning to experience general discomfort and a bit of weakness. He was able to walk around the floor 2 times this morning, and 3 times this afternoon.
Other than the ATG on Thursday and elbow radiation, he will be "resting" tomorrow - whatever that is when they are in the room at least once every hour to check something.
The actual marrow transplant will occur on Friday. We understand that his donor is a 21 year old male, with matching blood type but does not live in this area. So, the cells will be collected on Friday and couriered in. It may be late Friday evening, or early Saturday morning before the cells are actually infused.
As this is his home away from home for a while, they allow the patients to decorate their rooms. Jeanne arrived well prepared last weekend, and has decorated every wall, including the bathroom, with pictures, the kiddo's drawings, etc.
We continue to be hopeful that he will tolerate the transplant well, and will not experience graft vs. host disease ("GVHD") which occurs when the new cells ("graft") recognize the body tissues ("host") as foreign and begin to attack the tissue and organs. Some degree of GVHD is desired as this is the same process that recognizes the cancerous cells and destroys them. So, a fine line between good and bad!!
Please continue to pray!!.