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August 26, 2006
By Margot | August 26, 2006
Sorry for the lack of update. Time flies when you have a newborn. Every time I think I have a minute to sit down and update the website, it turns out I really don’t have a minute. We had our meeting with Dr. Villablanca yesterday. She was great and generous with her time and her knowledge and really worked with us to find a plan. She also just sucked all of the hope out of me and I left there so defeated and sick to my stomach, I practically had to scrape myself off the floor to leave her office. Not her fault, she was just giving us the facts. She is very dedicated and hates this disease as much as we do. She talked about different therapies giving kids “months” but everything we talked about was not “durable.” Mostly what happens in relapse is that you try something and it works for a while and then it fails and you try something else until that fails and you eventually run out of options. That doesn’t happen with all kids, some kids respond to one thing for years. We may be one of them. We are also hoping that one of the new trials coming up will show much more success. They aren’t getting data from Fenretinide that is knocking their socks, though some kids do stay on it for years. We talked about chemo and she likes that option said whatever option we choose, she would definitely radiate the spot. We are going to go with Fenretinide and radiation. It turns out we can radiate the big spot and use the little spots as our markers for the Fenretinide trials – we think, Dr. Villablanca is reviewing the scans. None of what she said was news to our ears, it was hard to hear for me all the same though.
Sam will have to have a central line put back in. Even the Fenretinide study requires one because of the frequent blood draws on day one and day seven (I think about eight a day and he can’t get poked eight times in one day). Also, Dr. Villablanca thinks we will need it down the road. We have surgery for that scheduled for Tuesday of the coming week. Sam is going to have hell week coming up. He has a bone marrow biopsy on Monday. A CT Tuesday morning, surgery Tuesday afternoon, Wednesday off, then up to LA Thursday to start Fenretinide and get his blood drawn every hour for eight hours. Everyone scrambled to start things for me next week so that Sam can start his first day of first grade on Tuesday the 5th. I think Dr. Villablanca even has someone coming in on Labor Day to do the lab work. Thank you Dr. Villablanca. and whoever you are coming in, thank you from the bottom of my heart. I didn’t want him to be the new kid again. I’m so happy he gets to start his first day with all the other kids.
I’m slowly building back hope and optimism. I’m reading success stories and talking to Neil about upcoming things. Sammy and I watched Star Wars V on the way up to the hospital. There was a scene where Han Solo, Princess Lea, Chewy and C3PO were being chased by Dark Vader’s” – (that’s what Andy calls him) guys through space and Han takes the ship through an asteroid feild. Princess Lea says, “You’re not actually going into an asteroid field?!” and C3PO says “The chances of surviving an asteroid field are 1 in 100 million (or some ridiculous number).” Han says with his Harrison Ford smirk, “Never tell me the odds.!” and shoots them straight through the asteroid field while the bad guys bash against the asteroids. I kept thinking of that scene during our meeting with Dr. Villablanca. Neil is still researching and working like crazy on knowing all our options and talking to every doctor and parents that he’s become such good friends with. We want to go as low toxicity for as long as we can and as long as it makes sense.
The boys are doing great. Sammy had soccer practice on Wednesday and was sprinting all over the field. We went to the beach yesterday he was way out catching some huge wave with his Dad. Elizabeth watched Charlie while we took the boys. Thank you, Elizabeth. Andy stayed in a little closer to the beach, he got tumbled by a big wave when he was there with Grandpa and is still talking about it. They had a great time with their Uncle Matt and he was a saint. Such a help. He took Andy and Charlie while we met with Dr. Villablanca, cooked dinner, bought dinner and played chase with the boys endlessly. Thank you, Uncle Matt. I am much better when I am out doing things with the boys because Sammy is still feeling well and three boys now, just keep us going. Don’t ask about my trip to SeaWorld to meet Cathy with all three when Charlie was nine days old – not the best of ideas on a Sunday in the summer.
Charlie is doing well. Cute as can be and such a good baby. I’m struggling with the pics but I’m working on them.
Thanks to everyone for their supports, prayers, emails and phone calls. Just call me Han Solo from here on out ;-).
Margot
Topics: Progress Reports | Comments Off on August 26, 2006
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