Jaymun Foundation
Update
| 9/25/2009 |
It was a very tough day today. We went down with Jaymun this morning early to the hospital for a MRI.
Notes for the record: Yesterday's labs were after a strong midday herbal dose,
and the high LDH on his blood test probably reflected leukemia cells being killed.
In addition, I've suspected that piperene was the culprit for his AST/ALT levels (on top of Dilantin/phenytoin)
...and I think yesterday confirmed that. It was the first time he'd gotten curcumin/piperene so close before labs were drawn.
Today those levels were on the way back down.
The past two days we've been boosting his immune system at night. Then he wakes up with his typical "GVH" symptoms. A little pinkish under the eyebrows, puffy eyes, rash on forearms, just a bit irritable. The next day his labs usually show "reactive lymphocytes". I was doing this every few days. ...this was the first time I did it two days in a row. A quick morning dose of Green tea, Burdock, Indole-3, etc. quiets things down, but today since he was NPO (no food) because of needing sedation, I couldn't get him his 8:00 dose until almost noon. So the poor guy was basically mildly inflamed all night and through the morning (on top of whatever was left over from yesterday).
And although some of what showed up on his MRI was that inflamation, it was obvious that brain edema is significant. I'm waiting to read the official report, but Dr. Kelly gave his perspective that Jaymun's CNS is worse than early August, with unresolved marrow disease to boot. (see some of today's MRI slices)
So we talked about options, and tentatively (questioning myself) we are discussing systemic chemo
(to start sometime next week?).
Clofarabine?
It didn't help to actually see the printed results from last Friday's marrow aspiration.
The Fish, Chromosomes, and Vntr all confirmed significant marrow involvment.
PS. Behind the scenes I really did not want this procedure today. It interrupted our herbal treatment at a very critical time, and provided information about chloromas that I already suspected was there by clinical observation the end of August. All month we've been treating him by clinical observation, with gradual improvement in neurological behaviour. I argued that even if we would see "worsening" chloromas (as compared to the MRI on 8/11) how would we know how bad they had been the end of August? As far as I am concerned today was a total bust because it was traumatic for Jaymun, and significantly interrupted a delicate treatment plan at the very worst time.
And now that the objective record shows only two points (early august with improvement, and late september with disease progression), I am starting to second-guess myself. I wonder if things really are getting worse fast ...which symptoms mean what?
