Latest #'s

It's scan week(s) for Max. He had MIBG scan last Wed (Melis reports stable on T11 but we are still waiting for the official word), MRI today. We skipped BMA (bone marrow aspiration) as he just had one, they've been negative since January and the last time he had one in June we landed in the hospital with an infection. No thanks, we'll take a pass on that this month! His LDH #'s are down (good): 632 today versus 722 on 7/2 but yo-yo on him so much that I'm beginning to discount the 100pt swings as just inherent variability. Still, as an emotional human its good to see them down.

We're about 75% through collecting other blood markers for the naturopath we're using to help us more acutely monitor various factors that are related to NB tumor growth and metastasis. I won't go into detail here because the tests are incomplete at this point, but I will say that Max's results are in the high-normal range, even with all the stuff we've been giving him that should theoretically address these factors (angiogenesis, inflammation). Still, there are some promising tools (tetrathiomobylate) that we haven't used yet, waiting for these tests to be done so we can baseline then measure progress. His Vit D levels are about mid-range on the 25(OH)D test which measure vit D. We're going to give him 400-800 IU extra daily to boost that a bit from the mid-range of 43 to hopefully the upper range of 70-80.

Max's counts were good today. We hope that the combination of oral chemo + continued supplemenation (added bromelain which may help stimulate platelet formation) + our new vegetable cocktail (kale, beets, red cabbage and garlic) that Max gets ~500ml of daily is helping to boost his immune system, blood cell production and overall health and energy. We're slowly transitioning away from the Nestle Peptamen, replacing it with the vege combo and more "natural" forms of nutrition, ie from real food you can buy and liquify in the cuisinart in order to push through Max's gtube.


Kevin Seidel said...

We think about you guys a lot and stay up to date through these blogs. We're pulling for you with all our hearts Max. Your ability to stay positive is inspriational.

Anonymous said...

just wanted to say hi MAX.
God Bless YOU!

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