This has been quite a struggle.
The oncology/transplant team presented the following logic (against marrow boost) Tuesday morning.
#1 If (against all predictions) there is any small hope for him to survive over six months, we would not want to do radiation following after a marrow boost/transplant, because if we did the transplant first, waited for recovery, and then did radiation - his immune system would be long-term compromised by the radiation.
#2 We had already decided that with the present (slowly growing?) subdural hygroma(s?) (see brain troubles)
...it is too risky to do radiation at this time (extra bleeding, pressure, herniation).
#3 Doing a cell/marrow boost now has much of the same risks.
#4 If we forgo a cell boost and wait until his cells come in by themselves, and there are marrow blasts - then that would have happened anyway even if we had done an expedited marrow/cell boost (if it's gonna happen, it's gonna happen).
#5 Forgetting about CNS cancer - the best case scenario (for brain/bleeding/hygroma recovery) would be for him to recover without needing a marrow/cell boost, as long as we can wait out the risky period (for infections). Although they say "self-recovery" from his aplastic condition will result in permanent transfusion dependance, at least his brain would be able to recover before stressing it further.
The beginning of last week I was jumping down everyone's throat pushing for a marrow/cell boost because he was trending downward. The doctors had told us to get ready to make decisions about end of life interventions. I perceived that the only way to reverse that trend was to get a marrow/cell boost as quickly as possible. His gut was not working and we had spent three weeks trying to fix that to no avail (laxatives, pro-motility, rest, feeds, xantech, etc.) Even giving it a rest for almost a week didn't help. He had an ileus with standing water in his intestines and intense belly pain that had him in an increasing spiral of morphine dependancy and intestinal failure.
#6 During the week of hourly supplemental/healing NG feeds saw immediate, progressive, and sustained improvement to the point where he has no belly pain and his appetite and, ahem, bodily functions have returned to normal (oh boy have they have returned!). Consequently, the doctors said, since the greatest infection risk is from inside your gut, and we as parents are actually doing more for his gut (with the constant supplements) right now than the hospital is, and further since there is almost a bigger risk of outside "bad bug" infections at the hospital than at home, we might as well go home and (aside from CNS disease) hope to hold a plateau more or less "indefinately". We can always give him white cell infusions if he gets an infection, but hoping his own cells will come back slowly is the best way to heal his brain.
And Moses said to the people, "Do not be afraid.
Stand still, and see the salvation of the LORD, which He will accomplish for you today..."