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September 7, 2006
By Margot | September 7, 2006
All for one and one for all. My three little red headed musketeers had a big day yesterday in Los Angeles yesterday. Sammy said he wants us all to come up every time. We drove in Tuesday night late, the kids were sleeping when we got there and Neil and I were worn out. There wasn’t a whole lot of sleep for Neil and I that night with all of us in one room but we’ve both discovered that caffeine is our friend. The family arrived at the hospital by 8 am so we could get Sammy’s port accessed, get his dose of Fenretinide and get his first blood draw. Dr. Seeger described us in his email this morning as “quite a crew.” Our nurse, Susanna was awesome and had a good time joking with both boys. Sammy said his port was much easier than an IV which was good to hear. Andy and Sammy ran through the halls of the hospital jumping in all of the colored squares and pretty much having a great time together. It was great to have Andy there, he really makes it fun for Sam and he brings a smile or a laugh to most who encounter him. He also loves coming as he doesn’t feel like he is being left behind and he wants to be where his big brother is, whether it’s in the hospital or not. After the first blood draw, we went out to breakfast at a little place called Fred’s 62. It was a great little Hollywood diner with pictures of all the starts on the wall. Sammy had the”Hunk- a hunk-a burning Love pancakes which were peanut butter, chocolate chip and banana. He loved them. Then we went back to the hotel where the boys played the “Hot Lava” game jumping from chair to bed doing summersaults and being careful not to fall in the hot lava (on the floor). We checked out and then went back to the hospital for the second blood draw. We had two hours in between each blood draw. We went up to Griffith Park which is ten minutes away and the boys hit golf balls. Andy lined all his balls up in a row and whacked them one after the other and then he peeked over the little wall at the guy next to him and after watching him hit for a little while, he said, “Hey, you’re doing a pretty good job.” The guy laughed and said, “Why thank you, that’s nice to know.” So Andy kept talking to him the whole time he was hitting. Sammy whacked the ball with his new driver and got some great shots in. We went to Borders for a while in the afternoon, ate lunch and then went back to a playground we found in the park in the late afternoon. Griffith Park is beautiful -4700 hundred acres and just a few minutes from a really icky part of LA. Andy fell asleep for a little while and Neil took a little nap while the kids were playing on the playground on the grass (I’ve always admired how he can sleep anywhere in any position). We were all pretty worn out by the end of day, tired and cranky but it was a fun day between trips back and forth to the hospital. Neil and I were talking about how surreal it all is. We were looking at the map and figuring out fun things to do. We might have been on vacation save for the fact that the reason we were up there is because our son has this horrible disease. We got a kick in the stomach when Sammy said his leg hurt at lunch time. He said it only hurt for a minute but still, ugh. We need to get radiation started. I relish the fact that we are not in the hospital constantly. Though we are really scared that Sammy might not respond to Fenretinide (please please let him respond), I love the fact that we are not stuck in the hospital on treatment and that Sammy is still able to leave. Being in the hospital and seeing all the kids who are stuck there all the time reminded me that we have to cherish the normalcy -school, soccer, karate, and being able to go to the hospital for doctor’s checks, blood work, radiation, etc. and then actually go home again or go hit golf balls.
Sammy is back in school today. He had a great first day on Tuesday. He saw all of his buddies from last year on the playground. He said he gets to go to the big playground now and he can do the monkey bars all by himself. He said they did math and reading and then his teacher read to them and then they got to play a game. He told me about one “very bad kid – who isn’t very good at math” who got in trouble eleven times. Sammy, by the way, is very good at math. He has his father’s math brain. He’s so logical. He sometimes floors me when I’m trying to figure out the logistics of something, he says, “Mom, just do it this way.” This of course is coming from the lit. major who used to bring her physicist father to near tears when he was trying to help her with her math homework. Anyway, back to school, the big news each day is who got their “card moved” which means getting in trouble. His teacher Mrs. Gage is great and Sammy really likes her already. I think we’ll have a great year with her.
Andy and I are going to his back to preschool picnic today so the mothers and kids can get to know each other. It’s such a funny switch to go from hospital days back to normal life, the dentist, preschool, packing lunches. As John London, said to Neil on the phone as we were driving home last night it’s like a whole other planet. It’s like we get on our spaceship and go from our cancer planet existence back to every one else’s planet.
Charlie was so good yesterday. We tried to get him out and stretch his little body every once in a while since he spent most of his time in his car seat being toted around. We were absolutely beat when we got back last night at 8:30. Charlie was wide awake since he slept most of the day so after I put the kids to bed I stayed up with him until 11:30 and then my sweet little baby did something he’s never done yet in his whole life. He only woke up once in the night. What a gift. I felt like I’d slept for days when I woke up this morning. I think Charlie has an eye infection because his eyes are really gunky and all the tear duct massing in the world doesn’t seem to help so I’ll get him in tomorrow to the pediatrician.
Neil did all the driving and then was up again at work today. He has a Superman shirt that he wears for the boys and he’s living up to it.
Radiation starts next week. I’m going to try and get it scheduled for after school but we’ll see if that’s possible.
Margot
Topics: Progress Reports | Comments Off on September 7, 2006
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