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August 29, 2006
By Margot | August 29, 2006
Just said goodbye to Sammy and Neil on their way up to LA. Oof. It’s hard to let them go. Sammy’s bone marrow came back positive. 10% in the left hip ( I think left). Neil knew it was coming and the doctors all told us if it’s in the bone, usually it’s in the marrow. Now we will radiate right away and use the marrow as the disease marker for the Fenretinide trial. Sammy’s first day of Fenretinide is tomorrow and he will sit in the hospital for eight hours so they can take blood every hour.
Sammy is feeling great and was running around with Mimi and Andrew right before he left. He and Andrew played with Joe and Jakey today they formed a rock band. It was very funny. You wouldn’t ever know Sam had surgery yesterday. He only asked me for Motrin once, though I kept asking him about it. He really wanted Andrew to go with him up to LA and Andrew wanted to go too. We’ll have to plan for next time so that the whole family can go up.
We are nervous now that we aren’t doing a stronger chemo but Dr. Maris thinks we are doing the right thing by trying Fenretinide. We are doing one course and then a scan so things won’t get too far ahead of us if it doesn’t work. We want to try to give him the best quality of life for as long as we can.
Andrew and Charlie are sleeping so I may try to get some shut eye myself. CTs were clear.
Please say some prayers and think some good thoughts for our friend Penelope London and her family today:
http://www3.caringbridge.org/ny/penelope
Margot
Ack. Struggled all morning to resize the pics but they are still huge. Sorry. Had some better pics of Charlie but am too frustrated to get them out of the right files. I’ll have to start sending to my Photoshop authors to help me. I can’t believe I can’t figure out Photoshop Elements better.
Topics: Progress Reports | Comments Off on August 29, 2006
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