"Shooting out the Tires"
I have a friend in Texas ...and no, that's not a song.
There is a dad "down there" with a similar challenge to mine - a son with relapsed leukemia. His son's leukemia (ALL) relapsed SEVEN times - the doctors originally wrote his boy off almost a year ago. Despite conventional predictions, he has done wonderful things with many of the same supplements we use for Jaymun's AML (m5), keeping the cancer out of his marrow.
He does things a bit different though - he uses Paw Paw to modulate ATP which basically throttles down the cellular engine, while I focus for Jaymun on apoptosis and differentiation.
Our inside joke is that Jeff "chokes the engine" and I "shoot out the tires".
His son Nick needs your prayers though - because of several relapses Jeff is still looking for ideas, and we brainstorm from time to time. So I guess Jeff and I both need your prayers. That raises a larger issue - a confusing question. Where do doctors fit into this picture? Why aren't DOCTORS the ones heading up this sort of search for Jaymun and Nick? Why do a couple of dads need to "fumble in the dark" when there are so many more educated people who could possibly interpret results so much more clearly?
You need to understand something about me that you might not catch from my wordy, technical sounding posts here. I am really just a plain, home-schooled person with a knack for putting things together, a generous touch of ADD, a bit of manic (minus the depressive), a fierce love for my son, a healthy dose of Dutch stubbornness, and faith that our Father in heaven enjoys answering when we ask.
It seems like only a few months, and I am barely coming up to speed with mere rudiments of oncology - a crash course triggered by this past summer's faith vs. hospital dilemma - trying to reconcile the following points:
A) I believed God was going to make a way for Jaymun through this leukemia.
B) I perceive the doctors' scientific approach as a great blessing.
When the doctors at one of the finest hospitals in the world ran out of hope for Jaymun, I had to choose between A) or B) - either the docs were wrong, or I had interpreted God wrong. We had the best docs (I double checked - explored finding new docs / experts / second opinions). Finding a new "expert" is easier said than done - who do you trust?
1) If new medical doctors use the same methodology as the old ones, why switch to people who did not know Jaymun as well? Plus it seemed that other docs around the country merely had more intense treatments of the same flavors, just the ability to inflict more damage without outright killing him in the hope of outlasting cancer a few more months.
2) "Herbal experts" quickly say negative things about doctors and their "money driven" system. But dealing with herbalists brings its own set of frustrations. You can hardly finish discussing the details of a specific herb without them recommending two, three, or five additional herbs for nebulous reasons at non-specific dosages without fully understanding active components, bioavailability, etc. Rather than documented case studies, you have networks of consultants who recommend things "that work".
So I started to look at what science was accomplishing in drug discovery, and I found something in the pipeline that was coming from a natural source (plant). However, I tried everything, to the point of getting offers from Senators and Presidential Candidates to push for approval - but we couldn't get access to the new drug.
FYI: good thing we didn't wait around - they are just now getting it into trials. (I'll let Margaret explain).
It was about that time that I began to lose faith in the current plan for Jaymun - and consider that since the doctors hands were tied, God was placing the responsibility on my shoulders to help him with natural methods. I realized there might be a way to use the best of both herbal and medical worlds - and leapfrog the system. The dilemma was, how to venture out into "new treatments" while still maintaining the hospital support system and not alienating those wonderful people, whose methods and knowledge have saved hundreds of children, and were invaluable for Jaymun?
Risky decisions are normally filtered through years of observation by many smart people. How to instead make them with only my "caffeine-jolted" brain to compare herbalist recommendations and "test-tube" science papers night after night? Speaking of which, my brain works in "weird ways" (stop laughing). After I absorb a huge amount of information, I will suddenly come to a number of startling conclusions - ridiculous mixed with valuable. Then I find people to play "devil's advocate" against myself - chasing down leads to prove or disprove a point.
This is where living at the oncology unit of a teaching hospital 24 hours per day came in handy.
When the resident walked past, I could pop out of room 5518 and ask her/him questions
...then the next morning listen to opinions on rounds
...later ask the same questions of the oncologist while I dropped off donuts at the doc station
...catch the new resident as they came on with the same questions and compare responses
...get unique perspectives from the nurses
...run into the docs from Froedtert in the tunnel and ask them also
...ask the neurosurgeon if you see her by the skywalk cafe, etc.
If something new happened late enough in the day and I had an entire night for Google, roaming, and questions - by the next morning's rounds at least I could understand what they were talking about. We owe a debt of gratitude to Children's Hospital. Without their patience and expertise we would have been stuck with merely switching doctors or going with some herbalist's plan untailored to Jaymun's AML.
I believe God guided this from the beginning. He even used nurse Kyla to kick me in the butt with her blunt observation that I should spend more time with my son. The world of "Pub Med" had started to open up for me - day and night I was like "Johnnie-Five" - "Input! More input!" But time was running out - you have to start somewhere - so at first with 5 bottles of herbs, and later up to over hundred varieties I'd set out the ones for the day and use process of elimination. With hundreds of studies rattling around upstairs I'd think and pray about what we were going to do, many times remembering priorities and making dosage adjustments as we went along.
So even though I might be able to fool an average person into thinking I know what I'm doing now,
every day I thank God for the guidance He gave then, and how He continues to lead us. Every week I learn new things about what we did, and why it worked, and how to adjust if needed in the future. You can gather ammunition, and slow down the engine, but if you are really going to stop the cancer car - if you are going to "shoot out the tires" you need
God to aim the bullets.