By Margot | December 1, 2009
We got the official report back today from San Diego and aspirates and biopsy were clean. Yeah! We still have to reconcile the other read indicating heavy involvement but that will work it’s way out in a few days I’m sure. So official reads are stable MIBG, clean CT/MRI, clean marrows. What’s confounding this is Sam’s LDH, which normally is a good tumor marker, continues to rise and has been rising. It’s pretty non-specific so it could be an infection of some sort but it’s something we follow so if anyone has any ideas, we’re all ears so email or post a message with ideas!
Hematuria is pretty much fixed with high-dose protein and the hyperbaric chamber so that’s something that is great for Sam as well.
Headaches are still an issue but we have had Sam visit an accupuncturist at Childrens San Diego today as part of their integrative oncology program and he looks better than he has in weeks. Let’s hope it lasts. For those acupuncturists keeping score, the meridian in his spleen and gall bladder are out-of-whack so the therapy is aimed at aligning the energy there. Sam enjoyed it and actually wants to return for a 2nd session Thursday. On the meningitis front, CT/MRI were clean and all of the fungal cultures (aspergillis and cryptococcal etc) were/are negative. We are getting a gameplan with Dr. Sholler (Vermont) and Dr. Willert (San Diego) working together and should have that soon. Dr. Maris had recommended the IV fenrtinide study at CHLA so if anyone is doing that or knows someone that did that, please let us know. At the moment, we’re going to defer that decision until January since we think Sam needs a break from the road and that trial would require him being in-patient for 7 days out of every 21.
Thanks for keeping Sam in your thoughts and prayers. It’s been a few tough weeks, months but the 4-day break was good for us to just tune back into family stuff and recharge our batteries. Neil