Day +47: Bad News, Bad Day

The chimerism results are in and they are not good. The neutrophils that have been growing are only 20% donor. The rest is Ezra. The percentages of donor cells for the other type of cells are even lower. The ideal scenario would have been 100% donor cells. Or something closer to 100%. Not 20% - that won't cut it. Despite the doctor's assurances, the chemo failed to kill off Ezra's old immune system. Despite their confidence that the cells growing are all donor cells, that is not the case. 

They are telling us that it is still early with a cord blood transplant and that the percentage of donor cells may increase with time, and that we just have to wait and see. We do know from our own research that with some immune deficiencies, mixed chimerism is fine. All the patient needs are some properly working cells. It may be that if he stays a mix of donor and Ezra it will be just fine. Or maybe he will reject the donor cells entirely in the end and we are left with nothing. The plan for now is to keep repeating the studies periodically to see if things change, but ultimately they wait 6 months before determining whether to do another transplant with one of Ezra's crappy backup options.

That was the news we woke up to. The day then continued on with Ezra needing surgery to replace his central line, which had developed a problem. We decided to allow them to do a bone marrow aspirate during the procedure in case that gives us any additional information. We were back for about an hour and the surgeon came back to tell us that the x-ray showed that the line was not in place and he needed to go back to surgery. This time the procedure was done in the regular OR guided with an X-ray machine so they could ensure proper placement. We have held Ezra in our arms as he was put to sleep more times than we care to remember. It never gets easier.

For now, we are just focused on managing Ezra's pain and hoping he isn't too traumatized.