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September 11, 2006

By Margot | September 11, 2006

The boys had a good weekend and Sammy had a great first week of school. He is home today sick with a cough and a fever – though he’s actually not feeling all that bad. I think Andy and Charlie are getting it too. Joy. I hate when Sammy has to miss school because a garden variety cold because he misses so much because of doctors appointments. Friday after school we had to go to the hospital for a blood draw for the Fenretinide study. We were going to have to go all the way up to LA to do it but Dr. Willert and Jayne at Children’s San Diego made all the arrangements so we could do it here, freeze it, and ship it up to LA. Thank goodness. Sammy did not want to have his port accessed but it was the only place we had LMX (numbing cream) and so he wouldn’t do it from his arm. The nurses and I ended up having to hold him down. Poor guy. He got some good kicks in at me for doing it to him. We went from there straight to Karate where he tested for his orange belt and he passed!. After the test, Sensei had all the kids kneel down and close their eyes, which they do after every class. When they opened their eyes, their orange belt was in front of them. Sammy just lit up. He was so excited. We took the boys out for Pizza afterwards. Neil and the boys have been practicing karate all weekend. We had Mack’s birthday party on Saturday and Arielle’s on Sunday. Both happened to be at the rock-climbing gym so Sammy got in a lot of rock-climbing this weekend. He loved it. Andy was a little too nervous to go up more than a couple of feet but he had fun swinging on the ropes. We went for a bike ride on Saturday night and it was beautiful by the bay – perked us all up (or perked me up anyway).
Happy one month birthday to Charlie! He’s becoming much more alert and interested in things and is still the sweetest little guy.
As you all can probably surmise from all of our activities, Sammy is feeling fine (aside from being sick this morning) and very active. He is constantly rubbing his eyes and nose though – a sign of high catechols, we recently found out. We are on our two weeks off from Fenretinide. He takes it for a week and then has two weeks off. People keep asking me how soon we’ll know whether Fenretinide is working. The plan is to do radiation all this week, do an MIBG on the 18th and then start the second course of Fenretinide. After the second course, we’ll do another bone marrow biopsy which will really tell us if we are gettting a response. Since we are radiating the main lesion, we expect that it will be smaller on the MIBG, we are using the bone marrow as our marker for Fenretinide. If the MIBG shows new spots though, we’ll know sooner that it’s not working and we need to go on to some stronger chemo. Then we’ll have some pretty big decisions to make on which path to take. Our hearts are aching for the Thomas Team. Reading their web site has taught us so much about how to live with this disease and it is crushing to read what they all are going through now.
Margot

Topics: Progress Reports | Comments Off on September 11, 2006

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