Kelptyn is enjoying his day of rest before his transplant tomorrow. His chemo treatments were uneventful for the most part. He did have a slight fever side effect with ATG, but he's been pretty happy otherwise all week long. Kelptyn's body is in MUCH better shape than it was last time prior to transplant so hopefully this marrow will jump right in to where we need it to go and get busy. Kelptyn will receive his donor's 2nd gift bag of cells tomorrow around noon and then we will wait/pray for the same things as last time.....that his body engrafts the marrow....that his body doesn't show us signs of GVHD....and that his treatment side effects are minimal. We won't know for several days/weeks if he is engrafting. We'll keep you posted. And by posted I mean one of the three of us will be updating our blog......just check out the picture below of the Grahams updating their blog.
Kelptyn's revised treatment plan will start tomorrow morning. He'll have 5 days of chemotherapy (3 different drugs), a day of rest, and then his second transplant of donor cells will be given next Monday, April 23rd. We are hopeful that this booster will do the trick. That's all for now. I've got to get things packed for tomorrow.
Despite cutting teeth, learning to stand, and Kelptyn laughing in the other room right now..... Kelptyn's latest test results paint another picture of what is going on inside him. His donor cell counts from Monday's labs show 20% on one marker and 16% on another. Kelptyn's donor cells engrafted very well in the beginning, but long term engraftment is failing. Kelptyn's BMT doctor has been consulting with several doctors across the nation and will be mapping out a final treatment plan before we admit Kelptyn back in to the hospital next Tuesday morning. Kelptyn will need to go through some more chemo treatment prior to a second transplant of cells. His doctor, Mommy, and Daddy remain optimistic that there is enough room in his bone marrow this time for the cells to nest and multiply. However, he is venturing in to an area of science that has not been in published research and is more based on the collective body of experience of many doctors. So we are starting over on "Day -?" and we move towards a new "Day 0" hopefully within the next two weeks. Thank you all for your continued support and prayers. I think I'll go right back to laughing and playing with him now. :)
Our sailor is at the mercy of the winds once again. We received Kelptyn's most recent test results on Friday afternoon. The results show a decrease in donor cells to 36% on one marker and 38% on another. This test was taken just two weeks after his previous test. The rapid decrease in cells is not good. It tells us that his body is not engrafting the donor cells well. Engrafting is the #1 obstacle with Osteopetrosis (next to organ toxicity) and Bone Marrow Transplants.
However, his doctor told us that as long as Kelptyn's test shows us 20% donor or higher (ideally we just want to see it stabilize over time) than that is enough to give him functioning osteoclasts and rid him of the Osteopetrosis. We were told that Kelptyn may never be 100% donor again and that's okay as long as he engrafts enough of the donor cells to keep his osteoclasts working for him. So essentially his donor's marrow and his own may coexist in perfect harmony if all goes well. We are waiting on another test, that was just sent to the lab today, to show us the percentages again. We'll be checking them every week for awhile now. If today's test shows another rapid donor cell loss then Kelptyn may have a second transplant of donor cells as early as next week. If his test results show stabilization of counts then we celebrate and cheer them on. |
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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