I honestly do not think I have ever been so happy to sit down and write a blog, for this has been a long, LONG time coming. Last week Daniel had his monthly bone marrow aspirate to check his cells again to see if his level of donor cells are increasing. Let me recap for you all in case you don’t remember. I remember, and can explain it because it is in the forefront of my mind every waking second of my day and night. Quick recap Day 0: Daniel was ablated of all Daniel’s leukemia cells so that he was ready to host his new healthy donor cells. He receives these new beautiful cells on November 12th, 2014 and we are technically considered Cancer Free I guess. All went fairly well on Graft Versus Host Disease and Daniel accepted the cells well. The transplant was considered a success and on Day 100 when Daniel was given another bone marrow aspirate he was 0% Daniel cells and 100% Donor cells proving his BMT was successful and his own cells were completely gone and his new cells had completely taken over and replaced his Leukemia cells in his bone marrow and would now forever do the job of making his new blood. Fast forward to 1 year post transplant and his next check in for bone marrow biopsy. Expecting to find the same 0% Daniel- 100% Donor. This was not the case sadly. Daniel was 90% donor and the Doctors were very concerned. Concerned he was losing his graft, concerned his Leukemia may be coming back. All of this shocked us and the doctors since Daniel appeared healthier than ever and his overall labs were normal. They started running all kinds of tests on this most recent aspirate to show that there were no Leukemia cells and in fact they did not know why his numbers looked like this. Daniel once again perplexed the Doctors and became one for the books. Now instead of coming in for once a year bone marrow aspirates to check his health and status, we would be doing a bone marrow procedure monthly. This is concerning. This is a lot for anyone. But month after month his 90% crept up to 91 then 93 then down to 91. We were back on egg shells and the threat of a boost type transplant procedure or possibly a second transplant which I could not even fathom. Daniel has been getting stronger and healthier by the day and yet this made no sense. Month after month Dr. Craddock remained on edge and cautious and reminded us he did not like this and was not comfortable. The one thing that stuck in the back of my head was the Doctor telling me that A. people can live with ratios like like that (but he was not comfortable with it) and B. it could be that because of all the immunosuppresants and the terrible virus that DaAniel had in his system for so long that it was just taking longer for his new cells to take over completely. I carried on hoping for option B. All along however every month Daniel’s 10% or 9% or 7% whatever it was, was extensively tested for Leukemia and his genetic translocation that he once showed and time and time again it showed nothing and this was really the most important test. 90% or 100% didn’t matter to me as long as the 1-10% was clean and clear. So here we are 5 pokes more than expected and the results are in and low and behold- 95% DONOR CELLS. 95% is the gold standard as Dr. Craddock explains as all we need to consider it okay to not be concerned. So in the end. It really was just his slow system we think getting all that horrible virus and all the strong immunosuppresants out of his system. They took their toll on his new hard working cells and they needed longer than we thought to clear all that crap and get their fresh start. That is my theory and I am sticking to it. Who knows, but he was always slower than the average schedule at regaining his numbers or his regular levels so again this is just par for the course. It is yet to be determined how frequent we will keep checking Daniel and how to make sure this stays the status quo. The point is that his body is functioning and doing what it is doing and is meant to do. His new cells are making the blood for his body and there is absolutely no trace of Cancer cells in his body. The fact that Dr. Craddock is more comfortable with where we are makes me 1 million times more comfortable with where we are.
I don’t know if we ever relax and stop worrying about our children. This is the case 10 fold when you have a child with a disease like Cancer that always has the potential to reoccur, but I can honestly say that after getting this significant piece of information, even a percentage difference between 90 and 95% has made this mamma take in a deep sigh of relief for even a moment and allow me to take on more step forward and out of this period of our lives and beyond it into our next stage of recovery.
And oh are we entering it with style. Stay tuned for a huge announcement next week.