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October 17, 2006
By Margot | October 17, 2006
Sam’s counts were good yesterday. Platelets were 96 so we started chemo. Our VMA was 15 (down from last week, hurray!) and HVA is 19 (about the same) but VMA is good news. Neil and I were of course hoping that it would be back to totally normal already but that was unrealistic. Dr. Scholler said it will take a while. We are in all day every day until Friday and we have our last five days of radiation this week. We got the first appointment of the morning so we wouldn’t have to do all day chemo and then go to radiation. Neil woke up and took Sammy to radiation yesterday for his 5:45am appointment and today for a 6:30 appointment. Hurray for the dad who wakes up at the crack of dawn to take his son to radiation and then goes off to work all day. We have early appointments every day this week and then we are done with radiation. Sammy and I are counting down. Four more days. Today we should be done with chemo a little earlier. Yesterday we got out of here at 6 in the evening but we had to wait for the results of the blood work in the morning and today they hooked us up right away. We played Boggle, Crazy Eights, Old Maid, and Go Fish yesterday and I ran back and forth to the Child Life Specialist trying to set something up for Sammy’s class on Friday afternoon. I think she’ll be able to give a presentation then. Sam doesn’t want to be there and the Child Life Specialist said it’s better at this age if he’s not because the range of questions is very wide as you can imagine and Sam might feel like he’s on display. It’ll be good to have the weekend for the kids to digest it. Evie, the Child Life specialist is going to give me a run down on how it went when she gets back on Friday.
Manny wasn’t able to get a break yesterday to shave Sam’s head and I had promised him we would do it yesterday so we stopped at the little haircut shop around the corner from us on the way home from the hospital yesterday. We walked in and there was only one lady in the store and I said, “We’d like to have his head shaved.” The lady said ok. Then she looked at Sam and said, “Oh my God, did he do that to himself?” I paused looking at Sam thinking, “It doesn’t look cut.” He had uniformly very thin hair all over his head with little clumps of thicker hair everywhere. I considered saying, “Yeah, he just went crazy and yanked out all his hair today,” just to freak her out but I didn’t. Colleen, I know you would have said it. He looks so cool bald. We put up his posters of Shaq and David Beckham last night and we’re waiting for Andre Agassi, Lance, and Michael Jordan to come in the mail. It only took Sam one day at school with thin hair to come home and tell me he wants to shave his head and wear a hat every day “forever.” We made a really big deal about how cool he looks last night. I’m open to suggestions for good comebacks to comments at school.
The chemo is hitting his tummy harder this round. It took until Thursday of the last round for him to feel sick. His tummy started hurting last night at dinner and he’s already thrown up three times today. I came in and ordered Ativan because he didn’t keep his morning Zofran down. They are both anit-nausea meds but Ativan used to work better. It usually makes Sammy kind of drunk and really outgoing but today it made him weepy. He kept down his chocolate chip bagel and his lunch so that’s good. Now we play the desperate game of trying to keep weight on him as he’s already lost about a pound.
Grandma Joan and Elizabeth were home with Andrew and Charlie. Elizabeth and Andrew drove over to the hospital with the Nifurtimox this morning because I forgot to give it to Sammy before we left and forgot his lunchtime dose. What would the kids and I do without Elizabeth? Thank goodness Grandma Joan is here this week. She’s been a huge help. I called called her this morning she was playing two-way radios with Andrew and he got on the phone and told me he’s dressed up in his Superman suit and that I’m a butthead and Grandma is a butthead. Nice. It’s his picture day at school today so we picked out handsome clothes for him this morning. He and I played chase at the hospital and rocked out with the toy electric “kintars” in the play room. He had all of the volunteers in stiches. He and Sammy have been playing chase and just came down and told Neil, “Dad, we want to play the jump on Daddy game. So, we’re going to jump on you, because you’re Daddy.” Very logical.
Charlie is good. Charlie, I promise to start the next update with you so you don’t grow up feeling like a footnote. He’s getting lots of attention from Grandma Joan (and me and Neil and his brothers when we get home at night). He’s smiling a lot and growing like a weed. He likes to look at Elmo do the chicken dance over and over and like his brothers, likes to be looking out when he’s carried. He also likes to stand up on my lap and gets the biggest eyes when he’s standing waving around. He sticks his little neck out and leans like Eddie the Eagle. It’s very cute.
I have a wireless connection in the hospital now so I can update while we’re waiting, thus the long update.
Margot
Topics: Progress Reports | Comments Off on October 17, 2006
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