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January 19, 2007 (two year anniversary of Sam’s diagnosis)

By Margot | January 19, 2007

The Scan (mom’s viewpoint at 3am)
 
We had a 7:30am MIBG scan this morning and we left at 7:20. I was panicked because I know how Loreen (our favorite tech) has to stay on schedule and I asked her to schedule us first thing. I put a sleeping Sam wrapped in a blanket in the car with his warmed up clothes from the dryer wrapped in a blanket to stay warm, shoes, hearing aids, movies for the scans and all of his stuff to do all day. He got sick on the way to the hospital (car ride). When we got there I hurriedly popped him in his warmed up clothes, grabbed the movies, and him and ran through the halls to get to the scan. Loreen was calling me on my cell phone while we were getting there. We walked in at 7:45. I sat next to Sam at the start of the scan as I always do and looked at the screen from across the room. The scan starts from the head down and it was looking good from where I was sitting by the time it got to Sammy’s shoulders. Neil had stayed behind to wait for Elizabeth and then followed us to the hospital. He walked in about when we were at the chest. He walked immediately over the screen and said to me in a low voice, “What is that?” Sure enough on Sam’s left collar bone there was uptake. My stomach dropped. As the scan got lower everything was looking clean in the abdomen and pelvis. Right about that point Sam got sick again and we had to stop the scan. Loreen changed all the bedding and made me take off Sam’s sweatshirt because if he had gotten any vomit (sorry about the visual) on it, it would show up on the screen. I said I needed to go to the clinic and ask Lauren for some IV zofran for Sammy. Neil said he’d go. While he was gone I was thinking, Sam got sick in the car, maybe it’s on his shirt on the collar bone – hoping – not remembering that he wasn’t dressed yet when he got sick in the car. After she does the entire body scan, Loreen goes back and does each section of the body by itself and there is a much better picture. I told her when we went back to the shoulders I wanted to take off Sam’s shirt. I had my irrational urge to scrub at the screen and at Sam’s collar bone and then to scrub at Sam’s skin to make that spot disappear. We restarted the scan. Neil came back with the Zofran and we injected it into his port. His legs looked clean! There might have been one little pixel where the spot used to be but it didn’t looked like it showed up on higher resolution screen. Neil left to go to work after we saw the legs. When we went back to do the spot scans, I took off Sammy’s shirt. As soon as I did, I noticed that the dressing for his port was coming off some and was way over his collar bone. “Could it be his dressing?” Both Laureen and the nice tech guy who was helping her looked at it and said at the same time. “It could definitely be his dressing.” Since that’s where the injection went yesterday, some of the radioactive stuff could have definitely gotten on his dressing. Loreen got me some new tagaderm and I took off his dressing trying to be as sterile as possible. The spot scan of his collar bone was clear! I called Neil as soon as I saw it because I knew he was freaked out and I just about did a dance right there in the scan room. We don’t have the official report back yet but it looked very good to us. I’ll post the report as soon as we get it.
 
Sammy and I have had very long days in the hospital this week. We’ve left each night around six. We didn’t start chemo this week until Wednesday because we didn’t have orders on Tuesday and the clinic was packed. By the time we had our doctor’s check it was 11:00 am and we probably wouldn’t have actually gotten the chemo until the afternoon which would have had us home around eleven pm or so. I tried to get Sam to go to a half day of school on Tuesday but he wouldn’t stay in his classroom. He really can’t take walking in in the middle of everything. We got in there and he panicked and we had to leave. I should have known better because he was pretty reticent at my suggesting he go. Sorry Mrs. Gage. I feel like I’m always interrupting your class and causing a big scene.
 
Sam has been a champ all week and we’ve been having a lot of fun at the hospital together. Aside from getting sick this morning, he’s felt well and, if I do say so myself, he looks like a million dollars. We’ve got a good routine down now. We go in, get hooked up, go down to the cafeteria for breakfast, go to the school room for a couple of hours (sometimes an hour), then go back and play video games, do lunch at the cafeteria after chemo and then in the afternoon we usually play board games and then towards the evening he watches a show (or today he watched a movie). Yesterday we got a little football out of the prize box and threw the football back and forth in the halls all afternoon. We had a few close calls with passing nurses. Sam is very in to football now since all of the Charger mania and Joe comes over and wants to play football. Miranda and her Dad came by today and it was great to see them. Sam loves having visitors. I have to say today that after my second nine hour day in the hospital I was feeling a little institutionalized – like Red in Shawshank Redemption when he tells Andy he doesn’t know if he can make it on the outside. I was imagining myself telling Andy Dufrain, “Really I’m going back to two other children and a career? I’ll have three children all together? But the nice nurses bring us things and when we are hungry we just go down to the cafeteria and get something to eat and it’s so peaceful here playing chess with my funny happy six-year old.” Also, Children’s Hospital San Diego is doing an integrative medicine program for patients and their parents. They had a pilates class today and people coming around to give massages. Sam came with me to watch me do pilates at noon and I got a massage while he was playing video games. I almost felt like I was at the spa (ha ha). Of course I was so happy to see Andy and Charlie when we came home. As soon as I saw their little faces I was happy. They were both very very excited to see us and I missed them and missed knowing what was going on in their day.
 
Another part of the institutionalization feeling is that if we have clean scans now, we have to figure out what to do next. There are many options and I keep hearing Dr. Villablanca in my head saying, “nothing is durable” so I think “why don’t we do something that is new and promising instead of something that is known not to be “durable.” Anyway, there are some new vaccines we’d like to get in line for and we will be talking about options with Dr. Sholler and Dr. Willert in the next few days and we’ll post when we come up with a plan. Neil has every option mapped out with data, he’s talked to parents who’ve tried different things and every doctor about every option. I feel as if the wolves who have been howling at the door have left to roam around the forest and we need to decide if we risk sending Sam out to play or if we double barricade the door. We are under no illusions that the wolves will not be back and we need to take measures to keep them at bay.
 
Sam was going to be star of the week this week at school but since we aren’t there it will have to be another week. We worked on his poster today in the schoolroom and I thought I’d share what he wrote here. I’m sorry I can’t redo the pictures he drew as well:
I am 4ft.tall. I weigh 40lbs. My hair is red. My name is Sam. My favorite things: soccer & video games I do not like: bees, pokeys, cheetos I wish: I could go back to Australia I wish: I could go to my Grandpa’s house and play in the snow I wish: I could see my cousins again
I guess we’d better start making some travel plans. 😉
 
Andrew’s birthday is next week. We are having a pirate party at the aquarium and he is getting excited about it. His favorite thing to do these days is to color. He’ll sit and color for an hour. He’s very meticulous about getting in the lines and is holding his crayons correctly and everything. He topped off my day today by eating all of his green beans at dinner. Normally, he won’t touch a green bean with a ten foot pole but tonight we made the very important discovery that he actually likes green beans as long as they are dipped in ketchup.
 
Charlie is rolling around a bit more now and I can tell he’s working on figuring out how to move from one place to another. I can see it when he’s on his tummy looking at toy, he’s figuring out how he can get to it. He continues to be happy and laughs at his brothers all the time. Just the sight of them makes him happy.
 
Thank you so much Amy and Colleen and Darcy for dinners this week. You have no idea how much they helped.
 
Margot

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