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Journal, Blood - 9/30/2009

The good news is that over the past three Head CT scans, Jaymun's brain bleed has not expanded.
Yesterday his AST, ALT, and LDH improved from morning to early evening.

But overnight Jaymun grew hypertensive with periods of high blood pressure and bradycardia. There were a few episodes of all-out screaming and thrashing, wild panic in his eys, arched back. It is horrible for him ...poor little guy is so polite he actually apologises afterwards while he lays shaking on the bed "sorrie mommie ...sorry mommie ...I'm ok ...I'm ok ...I'm ok" (gas pains? head?)

They started dexamethasone Monday night to combat cerebral edema surrounding the brain-bleed.
He's gotten doses of morphine for pain. He's gotten platelets, Fresh Frozen Plasma, and of course fluids high on sodium.
They stopped any of the supplements I was doing up till Monday when we first got here.

Overnight he was holding his bladder causing pain (a bladder foley drained 400cc in an hour).
They took a tummy xray and sure enough, he is constipated ...they are starting lactulose.
He's on oxygen ...moving up to hi-flow because of increasing tachypnia (faster shallow breathing).
He hasn't been eating ...coagulation numbers worse again this morning ...more FFP
He has fluids building up around his lungs (pleural effusion).

His LDH (marker that tells us about tumor cell lysing) jumped again this morning.
They drew cultures and are putting him on antibiotics because they suspect sepsis

Heart rate: 130
Oxygen Saturation: 95
Respiratory Rate: 95
Cystolic BP: 190
Temperature: 39.3 and rising (despite Tylanol)
Hi-Flo Oxygen rate: 15 liters
Pleural Effusion (right and left) (increasing over multiple xrays this morning and despite lasix)
Poor Liver Coags

This is very hard to watch.
Here we go down the slippery slope...
They stopped my Indole-3 Carbinol (potent anti-inflamatory and anti-leukemia)
They started dexamathasone which compromises his immune system - jeopardizing any immune based protection against his leukemia, and putting him at risk for infections.
He gets morphine for pain (which is again contributing to intestinal and bladder slowdown).
They stopped my Green Tea (anti-cancer, sepsis protectant, neuro-protectant, etc.)
They stopped my chlorophyll and slippery elm (which helped so much last year)
They stopped my astragalus (which upregulates protein-C and protects against DIC)
Now he is teetering on the edge of sepsis.

So he's got tummy gas, which has contributed to at least six horrible screaming episodes - which threatens his brain bleed. They put a large NG tube in to vent gas from his stomach ...he is completely miserable, coughing alot, gagging, breathing fast crying out "momma ...momma ...momma". So they need to increase morphine to keep him comfortable.
And now he needs antibiotics for the sepsis, which will further destroy the function of his intestines, the probiotic balance, and production of immune factors like Vitamin K2, which helps fight cancer.

If I could have at least continued his chlorophyl through the past days that would have supported both his intestines, and his coagulation numbers. I bring this up on every rounds, but they continue to insist that we hold off.
Now he is teetering on the edge of sepsis.

The Intensive Care Staff is doing a stellar job with the direction and tools they have, but it seems to me like overall priorities have pushed us onto a slippery slope that is weakening Jaymun's body and increasing reliance on a series of expensive interventions that we already know are aimed towards a lengthly, traumatic, painful treatment that will cost another million, and only promise a very minute chance of him being alive and in remission 12 months from now.

My perspective is that the traditional treatment (chemo/conditioning/radiation/transplant) we are considering is horrible risk and pain for about a 1% chance of cure. The oncologists here at Children's agree that the "herbal" treatment we did last year was successful to get Jaymun into remission ...against a low level of disease. However they do not think it will work against a higher level of disease. Of course last year, they said it would not work against a low level of resistant disease. So I want to believe them, but history shows they either do not properly, or do not honestly evaluate other methods. Are there any naturopathic oncologists out there that can help me and back us up here?
Has anyone else ever proposed similar to, or had success with (like we did last year) neutracutical AML therapy that offsets daily cycles of:
   ...anti-proliferation low vs. differentiation high
   ...immune stimulation high vs. anti-inflamatory low
   ...ROS stimulation high vs. anti-oxident low
...then reversing focus every 4 to 6 hours against a backdrop of periodical doses of natural Topo 1 and 2 inhibitors, upregulated DNA damage signaling (p53), intracellular cholesterol (hmg/CoA) inhibition, hsp90 down, and epigenetic pressure (telemorase down).

I think we can at least beat the traditional 1% chance by using a tweaked version of last years treatment (In the last 10-15 days I figured out most of what to change). And granted, there is still a high chance of it failing ...of Jaymun dying at home, but with less long-term side effects if it is successful. (radiation will take out his pituitary and thyroid glands, chop off an instant 10 points from his IQ, cause skin problems that will probably retard his motion ...I've seen other kids struggle to learn to walk again, etc.)

Even if we go with their treatment plan, there is at least a 90% chance that within the next year we will be back in this situation and our only chance will be to try this "deductive nutrigenomic" therapy. But he will then have an even weaker immune system than right now. If my treatment is a better chance, shouldn't we exhaust that possibility now? Again, last weekend I thought we had, but it turns out that with transfusion support we probably can continue.

Jennifer and I are right now trying to decide where to go. I'm leaning towards another few weeks of natural therapy, following it closely with MRI and labs. However the interventions are swiftly making my job much harder by suppressing his immune system. And by insisting on dropping "cold turkey" the protective herbal medicines I was using to support kidney and liver function, anti-inflamatory, and GI support, they are exacerbating this crisis, and prolonging the interventions.

This is very hard to watch.
I can't imagine what Jaymun is feeling.