Today marks Day 14 (that is 14 days since the transplant/21 days since we entered the hospital) and all goes well. The side effects of the chemo and radiation were pretty intense but right now the worst seems to have subsided. During the last two weeks he has lost his hair, skin has broken out in a rash that they think has to do with his hair follicles, experienced plenty of nausea & and diarrhea, and dealt with what he hates the most…the mucousitis and mouth sores. He’s had plenty of “modern” medicine and machinery to keep him as comfortable as possible. He has a pain pump for the sores, medicine to keep him from throwing up, lotions & oils for the skin rashes, x-rays & oxygen when his lungs started to deteriorate (which has since resolved itself), access to 24/7 pretty nurses (literally, they come in the room every couple of hours), and even more medicine to keep his blood pressure in check from all of this!
He has not been able to eat solid food for almost 3 weeks now. We tried the NG tube for 3 days, but he could not keep it down. The doctors decided to give him nutrients through his central line and that has seemed to level his weight loss out and give him enough energy to do his “chores” – mouth care, physical therapy, and school. The only bad thing about it is the amount of sugar in these bags. JT continues to wear his insulin pump, but where he averaged around 35-40 units of insulin daily has now increased to almost 100 units daily! We had to change out the pain medicine about a week ago because the morphine was causing him to sleep all the time instead of covering the pain and in turn caused the lung problems. We’ve had everything running smoothly for the last few days and as the doctor tells us…boring is good in the transplant unit.
Jim and I continue to swap out every three nights and knock on wood; it has worked well for us. Sydney has healed nicely. She stayed out of school recuperating the rest of the week after transplant and is now back and running with school (trying to play catch up!), tennis, and having fun with her friends. The doctors tell us it usually takes 2-3 weeks before we will see any changes in his blood counts. Specifically they are looking at his white blood cells which are at zero today. Since its day 14, we hope to see some improvement in the upcoming week. His platelet count finally bottomed out last night and he received a transfusion about 4:00am this morning without any harmful side effects.
As they say, no news is good news! Thanks for checking in with us! And thanks also for all the cards, well wishes, phone calls, goodie bags and food too!
xo Sabrina
