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Clean bone marrows!

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

Topics: Progress Reports | 11 Comments »

11 Responses to “Clean bone marrows!”

  1. Patrick Mussolini Says:
    December 1st, 2009 at 1:32 am

    Great News!!!!! So happy for your guys.

  2. Pat Lacey Says:
    December 1st, 2009 at 2:26 am

    Glad to hear it…the LDH does seem odd given Sam’s history of it being a great marker. Any correlation between the chamber/gas/pressure and LDH increase? Glad to hear you guys had a great weekend and good luck with the game plan. When there are so many low toxicity proven options out there to cure our kids it can be so damn hard to select the best one.

  3. caryn franca Says:
    December 1st, 2009 at 3:08 am

    WOW!!!!!!!!!!!!!!!!!!!!!! Clean bone marrow is HUGE!!! Were these the ones taken at CHOP and then sent or did you have them done again??? I’d be curious about the IVfenretinide… heard good things about the drug lately…….. I am with you guys!!! Caryn

  4. joan hutchison Says:
    December 1st, 2009 at 3:33 am

    Thank you, Lord, prayers were answered. It was wonderful to see all of you over this Thanksgiving, and I’m so happy that the news is so good. So onward to Christmas and a healthy 2010. lol grandma joan

  5. Nick Kuhn Says:
    December 1st, 2009 at 4:06 am

    Awesome news Neil! Its cool that Matt is moving to PB. Is that true? Say hi to the family. Adios to Weis. I hear Stoops is the guy! Sammy is in our thoughts every day.

  6. Lisa Bonebrake Says:
    December 1st, 2009 at 4:12 am

    Marrow CLEAN. Aligning the SPLEEN.
    Good lookin’ PEE. Slappin’ my KNEE!
    Thanks for the great news! Lisa

  7. rhonda dudley Says:
    December 1st, 2009 at 5:14 am

    man, you just made my day!!!!!! yeah!!! i’ve been thinking and thinking about you guys and thought i’d stop back by again even though you had just updated….glad I did!!!!! now i can go to bed with an even bigger smile on my face!!!! you guys will come up with a solid plan soon i’m sure!!! will be praying hard for your guy!!!!

    rhonda dudley

  8. Angela Rowe Says:
    December 1st, 2009 at 6:55 am

    Wonderful news and so glad you had a good break. Thanks for the post! Lots of prayers coming your way! Angela (Madison’s Mom)

  9. Laurie Says:
    December 1st, 2009 at 8:10 am

    So good to see you both today! I am glad for the good reports! Will keep pulling and praying for Sam!! Especially for the headaches to be resolved. Riley enjoyed the acupuncture as well. It was helpful!
    Neil I will call tomorrow and touch base about Tom Miller’s appatone.
    Take care!
    Love to you all!
    Robin and Laurie…Riles and boys

  10. Abra McKean Says:
    December 1st, 2009 at 2:26 pm

    GREAT NEWS!!! I think a little break is just what you all need…as always we are praying here in Wa.

    Love
    Abra

  11. Rebecca Storch Says:
    December 1st, 2009 at 9:39 pm

    Love the good news! Thinking about you guys always!