Thursday, November 6, 2014

BMT +45

We had thought Nathan would have some real counts by now and hopefully be transfusion independent but it seems that things aren't always quite so simple. After going off the white cell stimulant (G-CFS), his counts plummeted. Yesterday his white count was down to .6 and he still had no red cell or platelet production to speak of. He is still getting platelet transfusions three times a week. He is also getting smaller doses of red blood weekly as they are keeping him quite anemic in hopes that'll send the signal to his body to start producing red cells. And they are giving him that white cell stimulant every so often just to help give his marrow a little bump if/when needed. I keep wondering why things continue to be so unpredictable and it seems there is no concrete answer. The most likely scenario is that his enlarged spleen and liver, the same organs that were chewing up platelets at a rapid pace, also consumed a large portion of his sister's bone marrow. This means that the cells that are left would have to work much harder to repopulate and produce blood cells. The great news is that the cells are there, our official chimerism results are great and show that 95%+ of his white blood cells are being made by her marrow and he is showing no signs of rejecting these cells either. The cells are there, they will grow, but it's just taking a really unusually freakishly long time. Unfortunately, he now has a new virus that we are treating very aggressively. It is the Roseola virus which, as a member of the opportunistic herpes family of viruses, can remain dormant in your body and then reactivate anytime. We never knew he ever had Roseola but I have been told that the vast majority of humans have this virus in their systems even if a large number have never even shown symptoms; and we are at least fortunate that he is still appearing healthy and symptom free even now. But appearing healthy is not enough for a child who recently had a bone marrow transplant as these seemingly benign little viruses can cause some serious complications. So he is being treated with a new medication to suppress the virus and, once the virus is gone, they will rush to give him some of the extra marrow that had been frozen for him. Hopefully waiting for the virus to be gone is a very short delay in the grand scheme of things and these cells should give him the boost he needs to help his marrow to really recover. It feels so reassuring to have this solution waiting for us. Knowing that he doesn't need to be re-conditioned before receiving the cells since his marrow is now essentially made up of her cells, and that he is no longer rapidly consuming platelets so the risk of the marrow cells also getting consumed like they were in the past is very slim. I think I might be a complete mess if it weren't for this. That his doctor took the step to keep these cells "just in case" is a beautiful thing since needing this sort of boost is a very rare thing. Of course, in the back of my mind I also worry that maybe it won't be so simple. But worrying will never solve anything and I have to keep positive for his sake and for my own because all signs point to his full and eventual recovery. It just may take even longer than we had hoped. And I guess that's OK; it's just a monumental task for my (lack of) patience.

No comments:

Post a Comment