Stand Still
7-31-2008
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.
#7 However, the bottom line is the doctors opinion that the aggressive type of cancer he has will not be curable - that his CNS leukemia will intensify and kill him before his brain could recover enough to do radiation which is their only hope to put his CNS into remission. And even if by some miracle that would happen, they still feel that even if he had a 2nd transplant he would almost certainly die from [relapsed] marrow leukemia within two-three months (because of the resistant nature of his leukemia).
These last weeks they were trying to convince me of this same logic and it was not making sense to me. I felt helpless, chafed at the "inaction", the need to "do something". It felt like we had taken Jaymun onto the operating table, cut him open, and decided he wasn't worth sewwing up. There were other good doctors, and other good hospitals I was talking to, and even considering moving to. Then finally, late the other night, I decided to catch up on posting guestbook messages, and the top message on this page dropped like a thunderbolt from heaven leaving me speechless. Those words traveled from God to a man who wrote them over 200 years ago, to a good friend, and then to my heart. It was quite humbling and I didn't know at first how to take it. How do you react when God tells you to stop and listen? I had been asking God for direction, expecting what, I guess I don't know for sure... maybe some scripture: "I say unto thee, go south to the next hospital"? (poking fun at myself here). Seriously though, it is quite humbling to have God tell you to stop.
So Tuesday morning Jennifer left to shuttle Ben to his job, and wouldn't you know, five minutes after she left Dr. Talano comes down the hall saying they are ready to meet with us. Strange thing is, almost at that exact moment Pastor Rich had walked down the other hall dropping in for a visit. So he took Jennifer's spot in the meeting, and my mind finally resigned itself to what the doctors were saying, while my spirit felt quite relieved and at peace with it. Pastor Rich agreed, and when I called Jennifer she couldn't believe her ears.
Jaymun was coming home.
Last night we checked Jaymun out of the hospital and took him to the Ronald MacDonald House across the street (video).
Today we packed up from there and came home.
We are standing still, watching and listening for God.
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..."
Exodus 14:13
