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August 1, 2007
By Margot | August 5, 2007
Just a quick update to say that Sam’s numbers yesterday were beautiful. VMA 2.(something) -sorry don’t have exact numbers handy- HVA: 7.(something) LDH 647. Since we haven’t heard from Texas Childrens, we’ve gone ahead and scheduled scans for next week. MIBG is next Wednesday and bone marrow biopsy (yuck) is on Thursday. Sam is doing great though chemo really knocked his stomach last week and he’s still not eating as much as I’d like (better this week than last). We’ve been doing lots of fun summer stuff (Water park, Legoland, going to feed the ducks and the fish at Paradise Point, Concerts at the Park,and then last night dinner at the Catamaran with the Bonebrakes. Yesterday Sam went to school with Andrew had so much fun he asked me if he could go to school everyday with Andrew. We’ve packed so much in that as I’m putting Sammy to bed at night he says to me, “Now what fun thing did we do today again?” Needless to say, he’s not eager to go back to school. We are lucky. So lucky. Last year at this time, Neil was in New York meeting with doctors trying to figure out a plan for relapse and Sammy and I were meeting with doctors here trying to figure out whether we should do a biopsy on his leg -and I was hoping Charlie would stay in my belly long enough to get all of our necessary hospital visits in. Two years ago we were in the middle of Sam’s stem cell transplant and he was very sick. He received his stem cells on August 4th. In comparison, it is wonderful to be able to write about nausea today and to be going into scans with good numbers.
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Happy Anniversary today and Happy Birthday tomorrow to Neil -our family hero who shoulders so much for all of us. We love you!
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Please keep in your thoughts and paryers the families who haven’t been so lucky in the past months: The Gentry family who lost the amazing Nathan last Sunday. He will be forever seven years old: http://www.caringbridge.org/co/nathanmichael, The Saxon family who lost beautiful smiling Paul on July 14th: http://www.paulsaxon.com and the Mckeans who lost wonderful, redheaded Nate forty days ago, Carter Finger’s family has just made the difficult decision to stop transfusing him http://www.caringbridge.org/pa/carterfinger. It does not do these children and courageous families justice to mention them in a paragraph, they are all unique beautiful kids so please take the time to visit their sites and read their stories and realize what gifts neurobalstoma is robbing from this world. Nate McKean’s site is no longer up, it is too painful for his parents but please do keep them in your thoughts.
Margot
Neil and various kids at he bottom of the slide jumpy at Pump it Up.
Topics: Progress Reports | Comments Off on August 1, 2007
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