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October 4, 2005

By Margot | October 4, 2005

We’ve had a good week at home. Not too much activity as both boys seem mostly to want to stay home. Andy had his first day of preschool yesterday and did very well. He was sad when we left but his teacher said as soon as she started getting him involved he did great. I came to pick him up and he had sand in his hair, peanut butter and jelly all over his face and when I asked him if he wanted to come back he stuck his little finger up in the air and said, “Yes, I want to come back to school one more time, Mommy.” It was hard on Sam watching Andy go to school. He really wants to go to kindergarten and start karate and soccer. He did a great job of coaching Andy in the morning though. He said, “Andrew, school is a little scary at first but after a while it’s really fun.” He also helped me think of things to put in Andy’s lunchbox that he will actually eat. If it’s not a noodle, Andy is suspicious. We are going to start Sam whether we get the antibody treatment or not, we’ll just pull him out when he needs to get the treatments. We’ll probably start him after Thanksgiving. It’ll have been 100 days after the stem cell transplant; he’ll have the hearing aids and probably his hair. It’s coming in much darker than it was, it’ll be fun to see what he looks like with a new hair color. He and I are going to meet and talk to his kindergarten teacher on Friday after school is out. Today his home teacher comes and he’ll come on Monday, Tuesdays and Wednesdays until Sam actually starts school.

Thursday, we drive back up to LA for a blood check and Dr. Bolotin will put our information into the computer for the randomization. We should know about the antibodies shortly after that. Also, Dr. Bolotin said she’d give me the go ahead to let Sammy swim if things look good. I think I’m more excited about that than Sammy is. We are going to take him to Palm Springs with the Simpsons in the middle of October and he can swim until he grows gills. I want him to get as much in as possible before he gets another central line in. The bummer of course about not having a central line is that Sam has to get poked every time they take blood. I bring the numbing cream and the Glad Press and Seal for his arm and he does pretty well. He said he’d much rather go through the poke than the dressing changes for his line.

Sammy is still throwing up a lot but it’s getting better each day. It’s really only certain things that make him throw up. Sadly, it’s mostly chocolate things which of course he loves and always asks for.

We are taking the kids to Disneyland this weekend with Cathy and Carlos and kids. Neil is so excited he can’t stand it. He absolutely loves Disneyland and can’t think of anything he’d rather do with his weekend. Oh, oops that’s Bizarro Neil I was talking about, not the real Neil who has already started complaining and it’s only Tuesday;-)

I’ll update on Thursday after blood check and let everyone know about the antibodies as soon as we know. Again, to everyone, thank you all for your support and love this past year. I keep beginning thank-you notes to people and stopping them because it’s just impossible for me to convey how grateful we are and I’ll never be able to thank people enough for stopping their own lives and going out of their way to help us. We still have a long way to go but we are so so happy to be here. I keep thinking of the end of the movie Private Ryan where Tom Hanks tells him to “earn it.” I feel like we need to live now like we are earning all the goodwill we’ve gotten from people and earning the gift we’ve gotten of having Sam better.

Margot

 

Topics: Progress Reports | Comments Off on October 4, 2005

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