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August 17, 2006
By Laurel | August 17, 2006
I know that everyone has been waiting to hear the update today and I’m unsure what to write. I’m sure all of this information will change but I wanted to write things as I know them so as not to keep everyone in the dark. The spot is still there. It was more specific on this scan than the last scan but it looked smaller (probably because it was a more specific spot). We haven’t gotten the MRI report yet so don’t know if it shrunk, grew, or stayed the same. The blood work from yesterday was good. So, I think we will end up going on Fenretinide assuming the doctors are in agreement that it’s back. However, I hate to say that without the official reports back and without the MRI results because Neil and my reading the MIBG as we watch it come up on the screen does not a diagnosis make. We are actually very hopeful though believe it or not. I guess we were both preparing ourselves for his entire body to light up on the scan. Also, Neil spoke to a doctor today from Vermont who is an expert (sorry about no name, it’s late and I’m sleep deprived – I’ll fill in tomorrow) and she said it’s a really good sign if this is something that first showed up in April, we’ve had no treatment since then, and one spot is still all we’re seeing. We’ll see what Dr. Marris thinks about it when he sees it. Also, we get back the VMA/HVA tomorrow another good marker most of the time. We actually have to go back and redo his abdomen tomorrow because his intestines also lit up but I had just fed him lunch thinking I didn’t want him to be hungry during the scan. If there is a lot of activity in the stomach and bowels it is picked up by MIBG. Our favorite tech, said that she’s had several kids who lit up one day after having just eaten and then nothing shows up the next day. I’m going to assume that’s what will happen since we just had a clear CT and MIBG there but we’ll let you know if for some reason that’s not the case. Of course I had told Sammy that he was done with scans for the week but tomorrow is just a quick look at the abdomen (should only be 15 minutes or so) and then we’ll go do something fun with Grandpa and Stephanie.
We just got back from dinner and a swim at that house they are staying in Del Mar. Sam and Andy had a wonderful time in the pool and throwing balls for Adobe the dog. It was very relaxing. Charlie is due to wake up soon so I’m going to try and get some sleep. More tomorrow.
Margot
Topics: Progress Reports | Comments Off on August 17, 2006
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