So our Mystery Man has his doctors and parents in a surprising "Aw", okay more like a "What the.....!?!" Kelptyn's chimerism had dropped down to 0% on 2 out of his 3 markers and 1% on his Tcell marker previously. Well, I guess his hands and feet over the last two weeks really were showing us GVHD because his chimerism results from last Friday's test demonstrated: 7% Mcells and 53% Tcells. His doctor printed out the results because he thought we might not believe him. That's right his donor's cells are growing back and Kelptyn is fighting like hell to hold on to them!!! Kelptyn continues to be a bit of a medical mystery, but really I feel his spirit has been guided by something far greater than us all along. Every day is full of surprises and every day is a blessing. Thanks to everyone who is praying and cheering on our Happy Star! xo
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We received this letter from Kelptyn's donor today. We aren't allowed to exchange contact or identifying information until after a year from the date of his 1st transplant. We sent his donor a thank you gift in July, but she doesn't mention it in her letter so we hope it found it's way to her. We are so grateful that there are generous souls out there like hers. THANK YOU just isn't enough. Kelptyn also received his 21st blood transfusion today and has received a total of 11 platelet transfusions to date. Yes, I keep track of all of these not just for his medical record, but because I think of all the many lives that donate their time, blood, cells, etc..... on behalf of our son. The emotions are overwhelming and we are forever thankful to each and every donor. Kelptyn's rash looks slightly better this week, but he is still really bothered by it. The rash on his hands and feet now looks something more like GVHD. We are making some slight medication changes to see if the doctors can better guess at what is going on with his rash/body. We are waiting for his rash to get better before we can proceed with the donor cell process. We are SO happy that we have been home for a little over two weeks now. Kelptyn's been loving his time at home and has enjoyed many visits from our families over the past two weekends. However, since we took Kelptyn off 1 of his 5 blood pressure meds that was making his head bulge and replaced it with another medication. Kelptyn has been dealing with the side effects of the new medication (which we've discontinued) ....a FULL body rash with blisters. Kelptyn has been extremely itchy day and night without much relief from the oatmeal baths, benedryl, and prescription creams. Doctors say it can take up to two weeks to get better. So we've added yet another medication to Kelptyn's allergy alert list. They popped the blister on his foot today to run tests on the fluid inside it. Ew! I guess he was the star visitor for dermatology today since he was seen by 6 doctors trying to confirm an allergy.
Kelptyn's been truly a trooper through all these medication changes though and LONG doctor visits. We are so lucky that our son has such an easy going demeanor and is not a complainer. We are looking forward to this rash clearing up so that we can all sleep again. Below are two pictures of his rash days before it hit it's worst. |
AuthorI am the mother of a child with a spirit that's larger than life. Each day I am reminded of what a gift the present is. Archives
July 2015
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