Trapped between Marrow Aplasia and Active CNS AML
I'll be editing this post as the day/evening progresses and we get to talk with more docs.
Still waiting on neurosurgery to report on today's head CT.
The first reaction (not from them) was that the
that were drained are getting
slightly worse again
, but not horribly worse.
The neuro docs had told me that 80% of the time you eliminate them with the type of drain procedure we did.
So I guess if we failed (they come back or get worse) we simply try again.
Like I said, waiting for the true opinion of neurosurgery though.
And he continues to improve otherwise
...playing, walking along things, eating food, pooping alot (grin), no tummy pain.
He's still unsteady and shaky but that is improving also - he had been pretty weak.
Everyone is ecstatic about how well his gut is doing.
We took the opportunity to talk about CNS radiation.
That dramatic improvement over 5 days (7/23 - 7/27) was not expected
(especially since his counts are not moving anywhere).
(for his active CNS leukemia)
Dr. Firat (radiation oncology)
had a sober meeting with us to outline the great risks
of radiation at this point.
(brain damage, bleeding, complete gastro-intestinal failure, "further" marrow aplasia)
After talking with him, and neurosurgery, this is the way I see it in light of aplastic marrow 45 days out, refractory CNS disease, and (returning?) subdural hygroma(s?)...
In my (uneducated) mind there are two options (A and B):
A) Do radiation now
(15 days spread out over three weeks) (then do cell/marrow boost/transplant directly after that)
1. Radiation can cause swelling and additional pressure on the brain. Combined with the pressure already there, that increases the risk for herniation.
2. Neurosurgery told me the hygromas significantly increase the risk for bleeding all by themselves - and radiation increases the risk of bleeding - combined that is very dangerous.
3. What if the hygromas got larger during the course of radiation; would we then have to interrupt radiation?
4. Radiation increases the risk for bleeding - and with his constant platelet issues (because of aplastic marrow)
that risk is higher than normal for the brain.
5. Waiting three weeks till cell/marrow boost puts an additional time (on top of the 2/3 week recovery) that he will be without white cells/immune system/normal platelets and increases his
risk for infections, and bleeding from falls, etc.
6. Dr. Firat would like chemo support for his radiation, and we can't do intrathecal chemo with the brain in its current condition.
7. Radiation causes damage - and with a fresh marrow infusion directly after
radiation, when there is more damage - there is more risk of increased GVHD.
8. Jaymun's marrow may recover with blasts
and then we would have wished we did the cell boost sooner to hit the marrow cancer faster and we will have wished we saved CNS radiation for later (not wasted it).
The argument for
this approach would be that we are hitting the CNS leukemia as quickly as possible,
and that the cells transplanted afterwards would not be later damaged by radiation.
B> Do the marrow (cell boost) first
, then wait three/four weeks until the marrow recovers and do radiation then.
9. The leukemia in his CNS then has three/four weeks to grow unchecked.
10. We would be killing many of the new cells in his (just recovered) marrow, and while Dr. Firat would radiate a CNS with "healthy" marrow
even if you were not getting a transplant afterwards
there is a small risk that the radiation would make him aplastic again (requiring a 2nd cell boost).
The argument for this approach
would be that we dramatically reduce the eight risks in A).
We give time to resolve/reduce risk of the brain issues (1,2,3)
We have a healthy blood/marrow system first, and sooner, and under less damaging conditions (4 ,5,8 ,7)
With brain issues resolved and a healthy blood system we can
install a reservoir and give him chemo backup for his radiation (6)
As for risk 10. (2nd marrow aplasia) - it is small and could be resolved by another cell boost (more cancer fighting?)
As for risk 9. - do risk 8 and 9 cancel each other out?
So now it's back to oncology and neurosurgery - we'll see what they have to say. I suppose the argument could be made
that the standard treatment is to do radiation first, followed by transplant. Actually, however, the standard treatment is to do radiation first, THEN conditioning, followed by transplant.
And, since we accidentaly (side effect of 2-CDA/Idarubacin short on the heels if high-dose Ara-C) conditioned him,
the normal order is already mixed up
, and I think everyone who believes in God is praying hard
...the rest of them will believe once they get to come to Jaymun's third birthday party!