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Good news
By Margot | November 25, 2008
Clean bone marrows and no new lesions on the MIBG. We get the final read but we think that 2 old lesions are smaller and 1 old lesion is bigger. We know for sure that Sam’s catecholamines track his disease and this reinforces that.  We also sent samples of his bone marrows to UMichigan and UVermont for the Personalized Medicine program (flow cytometry, mRNA analysis, gene expression and soon, chemosensitivity-testing) — we think the best program in NB and funded by www.magicwater.org
We’re in Palm Springs for a few nights and return tomorrow (hanging with the Brunette’s). We will meet with Sam’s oncologist then and are looking to add somatostatin (a natural hormone) and maybe change the chemo based on some clinical results seen by Dr. Sholler.
All-in-all, we’re very pleased. We would surely like a clean scan but we have experimented with a ton of things the last 9 months and have learned alot which will help as we go forward.
Please keep Sam & every other NB child in your prayers. Â
Neil.Â
Topics: Progress Reports | 6 Comments »
November 25th, 2008 at 4:12 pm
That is great:)
November 25th, 2008 at 5:16 pm
Glad the final report was more positive than your original impression. Enjoy Palm Spring and post photos when you get back.
VB
November 25th, 2008 at 8:33 pm
So glad the news is good!!!! Maybe all those prayers do help!!! (-:
November 25th, 2008 at 9:16 pm
Your positive attitude and energy are an inspiration! What an amazing child and family.
November 26th, 2008 at 3:11 am
So very glad to hear it was better than what you first thought. I admire your strength and tenacity and I really believe clean scans are coming up for Sam- Accurate disease labs/indicators are such a good tool to have at your disposal that many do not have the benefit of.. Thanks for also sharing about the somatostatin. Let me know what you have heard about it- I have talked to Max’s docs recently about adding that into the mix and am working on how to procure it in the best formulation for him. Enjoy Palm Springs and your thanksgiving. So relieved for you.
December 7th, 2008 at 11:35 pm
Hey everyone!!!! It’s your somewhat cousin Emily I’m so glad Sammy’s tests are looking up. I pray for him and even though I’ve never met you guys IM SO HAPPY FOR YOU ALL!!!!!!!!! Glad that they had fun at the water park thing and i really love you all
the whole family is in my prayers and god will do his work in time love emily