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Journal

August
29
2013

Medical Update

So I know it has taken me forever to post, and a lot of you know this about me...when I don't get the news I want, I need a few days to process and come to terms with the next step. Unfortunately, not getting the news we are hoping for has become the norm. Somehow, we deal with it, make our decisions and keep moving forward. 

The scans show no change in Sam's disease following the MIBG with Vorinistat Clinical Trial. Many kiddos have a 30-40% reduction in disease with MIBG therapy, so we were really hopeful this would put a dent in the amount of disease Sam still has. Unfortunately, there were still several areas of active disease on the MIBG scan and the CT scan. They continue to show tumor in his abdomen, by his collar bone, in his bones - femurs, pelvis, spine, arms. Like I said, no real change. His bone marrow also remains about the same, with approximately 2% disease. 

We are thankful for no progression, but this isn't a disease that can just sit there forever, and we can't do chemo forever. So, we are continuing to ask for/beg for your continued prayers for Sammy's cure. 

Our plan for now is to go back to the chemo we were doing this spring/summer. The drugs are called Irinotecan and Temodar. We will start on September 9th. They have determined we will be able to do this over 5 days rather than 10, so we are thankful that it will be less disruptive to school than we thought it would be. We are hoping that he will have a response to this treatment and we will scan again in about two months after two rounds of this protocol. 

Thank you for your concern about our sweet boy. I have heard from several people wondering and praying about the outcome of the most recent testing. Right now, Sam is enjoying kindergarten. He is loving his new friends and Mrs. Spencer. And we are enjoying the normalcy of our lives for a few weeks. :)

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