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Untrained Eye Impression of the Scan
By Margot | November 21, 2008
Sammy was a champ today. He had his scan at 7:15 this morning because Laureen, the wonderful tech rescheduled the afternoon scan and came in early for us so Sam wouldn’t have to do a scan after a bone marrow biopsy – which turned out to be a good thing. It was hard to tell on the scan but the leg lesion definitely looked bigger. The head was clear, the left arm was clear. There might or might not be a tiny new spot on the right arm. There might or might not be something tiny on the left collarbone and there is still the spot on the sternum which has been there on previous scans and has been written off as port related, not mentioned or mentioned as possible disease. So, while the scan is not a disaster – anything really new is barely discernible, we are pretty sure we need to move on to a different therapy. We are hoping to stay relatively low toxic and we’ve got some ideas. We will have the bone marrow results tomorrow and will meet with Dr. Willert on Tuesday to put a plan in place.  Sam was great to hang out with today. We read GO LONG by Ronde and TiKi Barber, practiced his times tables, did a little science for his big test tomorrow and played Sorry. Even when he woke up in quite a bit of pain after the bone marrow aspriation he was so sweet and not very complainy about it. Kate, who did the aspiration said, when he wincingly said his pain was a “7”, “He’s not a complainer. Let’s get him some morphine.” He did get morphine and tylenol before leaving because he was really hurting.  Kate said that the left side was “very challenging and he might be sore on that side” – “challenging” is not really a word you want to hear relating to a bone marrow biopsy. Sam wanted to go out to lunch afterwards since he’d been NPO all day. He and I went to the Cheesecake Factory together and our eyes were much bigger than our stomachs but we have a lot of leftovers.
Sam’s parent teacher conference was yesterday and he’s doing pretty well. We really have to get his math scores up but we are working on that and he’s been doing much better.  Two things struck me about the meeting: First was how many people love and care about Sam at our little school -all of his aides, his hearing itenerant teacher, Diane, who was with me at the conference, and Mrs. Abbuhl his teacher add to those people who had nothing to do with the conference, Mrs. Gage from last year, Mrs. Emerson, Miss Heather, Miss Dee, and Mrs. Divacaris. Mostly, the conference was about how else they can help him out which was wonderful. We are so lucky to have such great support at school. The other thing that struck me was something on his report card that I want to frame. Not a grade but a number. The number of days Sam has missed so far this year and the number of times he has been tardy. Zero. The number is zero. If you have any idea how much school Sam has missed in the past, you will know that this is amazing. ZERO. There I said it again. I had to get it down here because it may change with a new therapy, especially if there is an IV push involved. He is home now and his back is feeling much better. He’s playing his video game (I promised) and we are going to watch Joe do a football scrimmage because we have to forego soccer practice today – though as soon as I told Sam that he said, Oh my back doesn’t hurt anymore, “Can I do soccer?” Then when I said, “no you just got morphine” he thought about it for a minute and said, “How about if I’m feeling better during Joe’s scrimmage, can I play a little football?” You know football is so much better than soccer in terms of contact sports after a bone marrow biopsy.
Andy had his parent teacher conference this week too. He’s doing really well and his teacher loves him. He’s going to start getting some harder math so he doesn’t get bored. Ironic huh? He’s been combing his hair in the mirror lately and asking if he looks handsome. It cracks me up. Yesterday he showed me how he does it. He puts water on the brush, combs it all down, and then combs it to the side all the while narrating how to do it. Then he says to me, “Mom, I’m going to open a store called the clean hairdo store. You come in with messy ugly hair and I’ll make you look handsome. Can kids open a store like that?” I told Neil that and he said, “Great, he wants to be a hairdresser.”
Charlie is making some strides in swimming. He’s talking like you wouldn’t believe. Always wants to play with “his boys.” He still talks to Elmo every time he picks up a phone and he’s dog and cat crazy. Gotta run now but will put in a Charlie quote soon.
 I’ll put official results up as soon as I get them. We are not too freaked out for some reason though, do have to change the game plan, make some halftime adjustments - whatever other sports analogy you care to throw in there to signify a new plan.Â
 Margot
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Topics: Progress Reports | 3 Comments »
November 21st, 2008 at 2:19 am
I’ll pray the new plan will be the winning touchdown!
November 21st, 2008 at 3:49 am
Praying for “Stable Mable”…sometimes she surprises us with a little visit… even when we don’t think she is in the house. Sending good karma and prayers your way…
November 21st, 2008 at 1:02 pm
ZERO days missed….what an awesome accomplishment. Go Sam !!!! you never cease to amaze me.