Things to be Thankful For
8-14-08
Tuesday night Jaymun was in a playful mood and I experienced one of those moments impossible to capture and reproduce.
He was happy, and tired all at the same time, but not relaxed enough to fall asleep in his own bed.
So, for a treat, I snuggled with him in our bed.
His head was about two inches from mine and he kept opening his eyes and grinning. How do you describe the
effect of contented, trusting, two-year-old eyes peering over a pillow through the dusky light?
Especially when he would reach out and tickle my nose, grinning at his own ability to "play jokes" on Dad.
I could just see that he knew I was having fun, and he was enjoying the power to make me laugh.
Then he would relax back into the pillow in the dark, where I could just see the outline of his smile while he
slowly pulled up his bare foot to try to push at my face. What a great lazy way for him to end the day.
Yeah, I am very thankful for these times. Thankful to God, and to all the people He used to help us get here.
No matter what happens, these times are a gift, delivered through the dedication of many fine doctors, nurses, and staff.
Since standard therapy does not promise much for Jaymun, we are working hard to make these times last, using what supplemental resources available, praying that God will bless some combination/sequence and give us another miracle.
Sometimes I get tired of organizing things on this website, but then I talk to other parents who are just starting this sort of journey, who thank us profusely for documenting things here. So I started working again on transfering the actual dosage log (supplements Jaymun is getting) to this website - will post it under the medical section when I'm done. That way at least people will be able to see what's been tried.
Speaking of which... Last night I found a series of charts that helps explain papers like Apoptosis based therapies for hematological malignancies
I found other studies that confirm that grouping natural supplements by pathway(s) helps synergistic effect.
Also that intermittent usage (sequential, planned pauses) helps separate competing supplements, and reset cellular resistance to treatment. Will organize when I get a chance.
Today's hospital trip took all day (he got platelets and also blood finaly, after a bone marrow biopsy, asiprate, and a head CT).
The big news is that today's ANC was 174! When they email me the labs I'll post them.
Before you get too excited however, the bad news was that his bone marrow aspirate had 1% irregular cells.
They also did a marrow biopsy (more accurate) - we'll wait until that comes back to know for sure what's up.
Also - from Monday's lab - peripheral blood showed only 90% donor (Devon) - 10% of Jaymun's blood is his own again. So that could be a reflection of the cancer growing.
His Head CT today still showed the fluid (not getting worse though). So they can't do spinal taps, in the absence of which they presume those cancer numbers are going up also.
But Jaymun is feeling good, so at this point thankfully, everything is in God's hands.
