Today, we celebrate once again that Kelptyn is on the road to recovery and thank God for the stranger who gave of herself to save his life. Kelptyn had a slight bump in the road last week, which put him back in the hospital for 3 days for more testing. He is okay and back on track as we continue to wean him off his medications. As his bones continue to remodel he is getting teeth and beginning to bare weight on his legs. :)
"Every day, thousands of people with life-threatening diseases hope for a marrow donor who can make their transplant possible. 70% of patients do not have a donor in their family. A patient's likelihood of finding a potential unrelated donor or cord blood unit has increased with the continuing growth and increasing diversity of the Be The Match Registry. The registry includes 9 million potential marrow or PBSC donors and nearly 145,000 cord blood units."
Today, we celebrate once again that Kelptyn is on the road to recovery and thank God for the stranger who gave of herself to save his life. Kelptyn had a slight bump in the road last week, which put him back in the hospital for 3 days for more testing. He is okay and back on track as we continue to wean him off his medications. As his bones continue to remodel he is getting teeth and beginning to bare weight on his legs. :)
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I just got off the phone with one of Kelptyn's doctors. His most recent test results show a decrease in donor cells to 75% on one marker and 84% on another. :(
The doctor assured me that he still has plenty of donor cells in there to rid him of the disease, but after discussing Kelptyn's case over with some of the experts in the field they have decided we should begin to wean him off the BIG immunosuppressants sooner than later. His research protocol calls for the wean to start at Day +100, but we will be starting tonight. Please pray that his body continues to engraft the donor cells and that this wean won't cause any severe graft vs. host disease flare ups (which is a possibility). All of Kelptyn's other numbers are pointing in the right direction so hopefully he'll stay the course. Well, I thought I'd post a quick update on Kelptyn's progress. He continues to visit the hospital clinic once or twice a week. Each week his medications have been adjusted and tomorrow we are scheduled to stop one of his two immunosuppressants. Hopefully, we will continue not to see any GVHD symptoms and Kelptyn can stay the course towards making marrow on his own while dropping drugs off his daily cocktail menu. Although, he'll stay on some the medications for at least one year, if all goes well. His eating has been minimal (all the drugs make him hung over every day with nausea/vomiting) and we continue to supplement his nutrition through his g-tube. Yet, Kelptyn continues to smile, learn new tricks, and play through it all. Truly an inspiration!
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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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