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October 27, 2005

By Margot | October 27, 2005

Eeks has it been two weeks since I’ve updated? Sammy has been taking his cis-retinoic acid pills for almost two weeks now. He’s getting pretty good at taking the pills (hidden in a spoonful of ice-cream with chocolate sauce) but it takes a while to get him to do it. I have found myself chasing him around with a melting spoonful of ice cream yelling my head off. I wonder if they have Nanny 911 for cancer families? We just adjusted the dose a bit yesterday because his lips were getting really cracked and the skin around his mouth and cheeks were bright red. Dr. Bolotin said we can safely lower the dose and take them for an extra week at a time so instead of two weeks on and two weeks off it’ll be three weeks on and one week off. Sammy doesn’t like chapstick or lotion so I have to put it on while he’s asleep. Ususally consists of me fumbling around in the dark and smearing it everywhere but actually in the areas where he needs it.

We had a great time in Palm Springs. The kids got a lot of swimming in, we took the tram up to the top of the mountains and hiked around in the first snow of the season and then went back down the tram and swam some more. They did the Children’s Museum, The Living Desert Zoo, and had a great time in general with Mac and Tyler and Madison and Ricky (the other kids on the trip). Neil and I actually went out to dinner together and I got a mom’s night out too. Wahoo!

Sammy likes his home teacher and he won’t start school until after February. Dr. Bolotin wants to make sure he has a flu shot before he starts and he can’t get a flu shot until six months after transplant. We had a blood check yesterday and they did and an extra x-ray and urine test because two nights ago before he fell asleep I asked Sammy if anything was hurting him and he said, “Actually my right knee hurts when I bend it.” You can imagine the cold fear in the pit of my stomach. Neil and I didn’t get much sleep that night. I have become the equivalent of the kids on a car trip asking if we’re there yet, “Does your knee hurt now? Does it hurt now? Does it hurt when you do this? How about now? Anyway, Dr. Bolotin, wasn’t too concerned but thought we ought to get an x-ray and a urine test just in case. The x-ray was clear. If it’s still hurting him in a week or so, we’ll get an MRI. The good news is that he says it didn’t hurt him at all yesterday or today so he may have just tweaked it a bit when he was jumping on the couch with Samantha and Andrew. That’s when he said it started to hurt. Again, where is Nanny 911 when we need her? I imagine we are going to have these kinds of scares in the next couple of years and I hope and pray and wish upon every first star and penny thrown into a fountain, and dandilion blown and birthday cake…. that they all turn out to be nothing.

Sammy’s hearing aids came in today. He hasn’t been wearing the loaner very much because he says it hurts him. I had them tweak the mold today and hopefully that will help.

Sammy and Andrew are going to take a joint private karate class this afternoon. They love it and though Andrew doesn’t really last the whole lesson, Sammy likes the idea of having Andrew take the lesson with him. It’s pretty hilarious watching them both. I’ll post pictures if I get a chance. We are going to Andrew’s Halloween carnival at his preschool tonight, the first of the big Halloween weekend activities. Sammy’s school carnival is tomorrow. Joe and Arielle are going to show him around. Uncle Matt is flying in today and Sammy wants to smoke him in Mario Karts. He loves new victims ;-).

Margot

 

Topics: Progress Reports | Comments Off on October 27, 2005

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