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I'm very sorry to hear this news. My nephew had a MUD BMT in 2001 for Chronic Myelogenous Leukemia. He was 14 at the time, and the donor cells did not engraft. It was a truly horrible period of time after we reached the point where it would have been reasonable to expect that donor cells would have taken up shop, and then day after day after day it didn't happen. But he had no functioning bone marrow of his own either because of the chemo and total body radiation (heavy doses to eradicate his leukemia, which had started to accelerate prior to diagnosis). My memory is blurry now, and probably I have repressed a lot, but maybe around day 60 or so his own bone marrow finally started to come back. He was in the hospital for over three months and then stayed nearby in a residential hotel for another couple of months after that.
I think part of the reason I complete freaked out when my husband originally turned up with pancytopenia and they started talking possible AA was the lingering family trauma of my nephew's ordeal.
It doesn't get much tougher than a failed BMT, if that is indeed what is going on. But even after being subjected to an extremely grueling conditioning regimen that had completely wiped out his marrow, my nephew still had youth and determination on his side, and high quality medical care, and the love and support of his family, friends, and community, and he got through it. And he has since that time graduated from college, begun a career as a teacher, and gotten married to a lovely young woman.
His doctors did initially want to do a second BMT the following summer, but he had been diagnosed just before the "miracle" drug Gleevec moved from the clinical trials (for adults) into front line use for CML. So when the first signs of his cancer returned (the "Philadelphia chromosome"), he decided to opt for Gleevec since it was by then available to him, and that medicine has kept him in remission ever since. In the meantime, new drugs have become available as well.
Since his illness was not MDS this experience is not right on point, but do know that others have gone through a failed transplant yet still ended up with happy outcomes. In my nephew's case, one door closed but another opened up, and the chemo and radiation did knock back his cancer during the interval when Gleevec was not yet available to him because of his age. I can't offer any other advice than to say maybe try to take it one day at a time while you wait to see if the doctor's suspicions are confirmed. We'll be holding your daughter in our thoughts.
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