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Results
By Margot | March 20, 2009
To start with, the CT was totally clear. Wohoo! No soft tissue disease. The MIBG summary read as follows:
IMPRESSION: Mulitple areas of skeletal metastases. Findings are likely unchanged compared with the prior study given the differences in technique (not sure what differences they are referring to here). The only appreciable difference is the previously seen left proximal humerus lesion is no longer visualized.
So that seems really good but when you go back up to the findings section where there is a more detailed report it confirms all of the spots that were there before and then has a sentence saying: There are also questionable areas of increased uptake within the spine and possibly sternum. There is also a questionable area of increased uptake within the left calvarium (that’s the top of the skull).
Of the three bone marrow samples, the San Diego lab reported that two were clear and one had 33% disease. So one out of two isn’t bad but 33% is a lot. Dr. Sholler said that her sample is growing stem cells. Not good from a disease standpoint at all but good from a testing standpoint. Sam’s cells have been very stubborn about growing at all so now there is something to test. Kind of bittersweet.
 Our VMA/HVA is up: VMA 31.8 HVA 32.6 after our week off chemo. We’ll have to wait and see if that is a trend – it was trending down.
Mixed news I guess. Nothing devastating and some good news in there but very strong signs that we can’t turn our back on Sam’s disease, not that we ever have.
Sam is in school today. I have his parent-teacher confernce at noon with Mrs. Abbuhl. Somehow these conferences keep falling on scan week. Certainly puts things in perspective.  The boys have a half-day for the conferences so I’m done talking with Mrs. Abbuhl we’ll go do something fun on this first day of Spring.  I keep promising Charlie we’ll go to the zoo so maybe that’s what we’ll do today.  I’m going to try and get some pictures of soccer this weekend and will post some early next week.  Doug is going to update the banner on our website since Charlie is a little baby in the family pic., I thought I’d put some of the latest pictures from Deb up there.
Margot
Topics: Progress Reports | 5 Comments »
March 20th, 2009 at 5:39 pm
I can’t wait to see the new pictures. Give the boys hugs from michigan.
March 21st, 2009 at 5:11 am
We just read your updates here in New Zealand, Margot. Just wanted you to know we love you and all your boys, and are thinking of you daily….hourly! Dad
March 21st, 2009 at 2:46 pm
I am sorry to read this Neil and Margot–not at all the slam dunk good news I have been praying for so very very hard–cranking up the fervent prayers for something that will knock the disease out for good. I hate this evil disease. I hope Dr Sholler’s tests with Sam’s NB cells provide the perfect solution SOON!
Thinking of your entire beautiful family CONSTANTLY.
Love and prayers!
March 22nd, 2009 at 5:39 am
Bittersweet scan results in the world of NB…I’m shocked. Seriously I’m sorry to hear it wasn’t more definative but as always you will figure something out and I’m here praying that it will be the thing that gets rid of this $#@^ disease for good!!! We are headed down to your neck of the woods (Disneyland) in a week save some of that California sunshine for us :). As always we are praying here in Washington.
With Hope,
Abra
March 30th, 2009 at 2:14 am
just wanted to stop by and tell you guys i’m thinking about you!!! Ofcourse I always am.. I frequent this site so much I do it without thought anymore!!!
I just want you to know that you help my heart.. i’ve let this blasted disease drag me down and I come here to see how others live with this disease and don’t let it destroy them.. you stay happy and bring great joy into the lives of those darling boys of yours and you continue to bless and inspire me!!!
love you guys lots!!!
rhonda dudley
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