Today Jaymun is back to his normal cute self. He is eating well, his rash cleared up,
his bowels seem to be working properly. He is mostly disconnected from his IV, so he can run about a bit.
We are so thankful for this time to enjoy together.
However, his improvement simply means the treatment introduction is ready to give way to the main event.
We did his radiation workup today, in a few days we start his extra boost radiation to his head/spine,
then the full body radiation, to be immediately followed by more chemo - all designed to entirely wipe out
his immune system. That will be followed by another bone marrow transplant from his brother Devon.
We just had the meeting with Dr. Firat (the radiation expert) who reminded us of the possible
short-term effects of the radiation: nausea, headaches, diarrhea, etc.
Potential kidney damage, liver damage, Lung damage leading to pneumonia, etc.
And also the long term effects. Learning disabilities, pituitary and thyroid damage (hormonal problems -
retarded growth and maturity), growth-plate damage to bones (permanent growth stunting), sterility, etc.
We really have no choice.
We are coming to grips with how severely ill he is.
Despite his temporary reprieve from symptoms, there is a deadly disease lurking within him (literally hundreds of millions of cancer cells moving around his body),
and we are forced to "amputate" some healthy things in order to make sure we kill them all. If you had gangrene in your toe - you wouldn't just treat your toe until your foot was infected,
then treat your foot until you lost your ankle, and etc. until you lost your leg. You would just amputate your toe.
So this is our plan:
...to intensify targeted therapy - and hope his body will survive.
...to wipe out his entire blood system - as severe a treatment as the rest of his body can stand, and then
...to transplant in (from Devon again) a healthy immune system.
The last treatment (2006) worked (for the skin) - but the cancer hid out instead in his CNS - then returned as more resistant.
Now we need to chase it out of his CNS and kill it everywhere else again.
The docs (love them all) are giving us only a statistical 20% chance of success.
That is dismal. That is an 80% chance of having to do this all over again six months from now.
I've been fighting so hard to find some way, any way to increase that 20% sucess rate to even 30 or 40.
I know my puny efforts pale in comparison to the time and energy the doctors here invest each year for hundreds of people.
And I am so grateful for their compassionate committment.
Let me give you an analogy of our dillemna - comparing Jaymun's immune system to a dam holding back the cancer:
Lets say he was born with a 12" hole
in the dam. His first treatment obviously plugged that hole with a 11.99" plug.
Because our "ruler" doesn't measure in fractions of an inch, the most resistant cancer kept "leaking" undetected.
So the "leak" has now created a 24" hole
And the doctors are telling us that in all likelihood we are still only plugging that larger hole with a 23" plug, despite the best methods medicine knows.
If (as they predict) the dam breaks again (six months from now) - it will then be a 48" hole
(more resistant leukemia).
By that time, we have created an almost insurmountable hurdle for whatever experimental treatments
we might try.
Each time we "rebuild the dam"
it takes longer to recover - so we are fighting future relapses with a smaller dam.
Each time we "plug the hole"
the body absorbs more stress, and fights off infections during a longer recovery time - we inherit a
more sluggish immune system - so we are filling a larger gap.
Consequently, relapses eventually come too rapid and strong to be treatable.
Ironically, although we cannot use experimental treatments until we exhaust "normal" treatment,
it is the experimental treatments that provide a "bigger plug"
) or a
. And even if they only add an "One inch"
margin, the combination of the two might have
been plenty enough
to "stop the leak" the first time, and barely enough
to "stop the leak" the second time,
to do so, once we finally try them.
Right now I feel so entirely helpless.
Like a complete failure of a father who has a trusting little boy
unaware that a ticking time bomb is going off inside his body - and that two or three days from now I am submitting him to
another devastating treatment that only has a 20% chance of succeeding.
So this is where the rubber hits the road. Who is really in charge here? Can I make something happen by analyzing and deciding, when all along the doctors are smarter? Can the doctors force through a new treatment if the FDA decides it spoils careful scientific advance?
I spent weeks studying, thinking, and asking questions
, and can find no way to widen that critical 20% success window.
This afternoon I happened to share my frustration with one of the nurses. He paused, and only said:
"...remember, down in the PI (pediatric intensive care) you had a 90% chance of not making it.
And of course he is right. As long as God goes with us - the "percentage" makes no difference.
Who is in charge?
God is in charge
I am reminded of another time, another place, another people who faced an impossible situation with no "out".
But God made a way, and demonstrated that He can hold back the water
"Father - please help us. You gave us little Jaymun, and You brought us this far
...to a place that is so scary and impossible. Father, I need You.
I am supposed to be a leader and I do not know which way to go.
You can bring us through safely, or find another way. I do not know what to do. I trust You, Father.
Have we come all this way for nothing? Am I a fool for trusting in You?"