teamsam.com Blog

« | Home | »

September 18, 2006

By Margot | September 18, 2006

Today is Andy’s first day of preschool for the year. He went to his open house last week and likes his new teachers, Shauna and Roberta, and his new big room. He’s in afternoons this year 1-4. I’m not sure how tired he’ll be because he still naps every once in a while in the afternoons but we’ll see. He’s going to miss tomorrow and Thursday because we are going up to Los Angeles but I think he’d rather come with us. He’s so funny. We were at breakfast yesterday and there was a guy with a long blondish beard and longish hair and as we were leaving Andy and was behind me and he yelled at the top of his lungs to get me to stop, “Mommy!” “Mommmyyyy!” as he’s pointing staight at the man, “This guys looks just like Santa.” The whole restaurant cracked up. Luckily the guy thought it was funny too. It was almost as funny as the time he pointed to the crazy homeless lady and said “Hey, there’s Grandma!” We had a great weekend -four whole days off from the hospital – wohoo!. I realize I’m spoiled in saying that since days at the hospital are really just appointments and we are not actually staying in the hospital. I’m appreciating that, really I am. Sammy had a play date with his little buddies Leif and Tanner on Friday afternoon and I showed up to pick him up and he was in full Power Ranger costume and he wore it for the rest of the night. He had his soccer game on Saturday and loved it. He had the biggest grin on his face every time he touched the ball. He had some great defense and was really aggressive. He did so well for having missed so many practices. I almost cried when he came close to scoring a goal, I kept wondering if it was going to have to be his last game of the season- if we have to start chemo next week. His team lost and he said, “Mom, next week I want to win.” I gave him the old standard, “Sammy, it doesn’t matter who wins or loses as long as you have fun.” He came back with, “Well it matters to me.” We had the Monaco boys over for swimming and dinner on Saturday afternoon and then had a birthday party yesterday. Last night Neil took the boys for a bike ride and then we went up to Kate Sessions (we think the most beautiful spot in San Diego) when it got dark with some blankets for our homemade drive-in with the DVD player on the grass. It was a busy weekend. Sammy has sharing day at school today and brought his orange belt and his karate manual and wants to teach the kids some karate moves. He wants to walk home from school. He asked me to do it every day last week but we had to go the hospital every day after school so I promised him today and he said on the way, “If the doctors call for an appointment today, tell them we can’t make it. We’re walking home from school.” He’s so cute.
We are hoping for the best on the scan and preparing for the worst. Neil has put together a spread sheet of all of the options for relapse and we have a lot of choices for our next step. Neil has researched every new thing out there and on the way. There are a few options that stand out as better than the others. It seems like the old stuff all works for some kids (at least for a while) and doesn’t work for others. I think we’ll probably go with Topo/Cyclo (for those of you in the cancer world) and Nifurtimox with Giselle Sholler in Vermont. We’ll probably fly out to meet with her if we go that route. This is of course is our thinking today and that could change by noon. We’re also thinking about the 3f8’s and are talking with a lot of parents who have gone that route. Maybe all of this will be for naught and the scans will look great and we can stay on Fenretinide. One of our online friends sent us some info. on a little girl who was saved by Fenretinide just this morning – thanks Sara.
Charlie is doing very well. He’s starting to smile a little, a little lopsidey sort of smile. I had to cancel his one month check-up appointment for tomorrow since we are all going to LA. I only felt slightly guilty about it because I just took him in last week for his little eye infection and Dr. James told me how healthy and great he looked. We rescheduled for the first week in October. I’ll post some soccer pics and Andy’s first day of school soon and I’ll try to get one of Charlie with his eyes open – might have to be in the middle of the night.
Margot

Topics: Progress Reports | Comments Off on September 18, 2006

Comments are closed.