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Thu. 1/29/04 +Details

Thursday, 1/29/04
Here are the details I promised. I’ll start with the most recent information and then share some stories that happened last week.

My sore throat was gone by the time I woke up on Wednesday (1/28/04). Thanks for all the prayers – they must have worked. I’m still feeling fine, though still tired. Jason was wonderful and allowed me to go to bed and stay there all night long last night. He took care of Les’ feeding and medications as well as getting up with him throughout the night. I didn’t get up until after 7am. (Which is sleeping in for me).

Back to the hospital visit. One of the Physical Therapists visited us on Monday to check out Les’ muscle tone, especially in his legs. She explained to me that what the Vincristine chemo does is interrupt the nerve signals from the brain to the muscles. We can attempt to strengthen his muscles as much as we want, but unless his brain tells his muscles to work, most of our efforts will be in vain. (That’s my understanding anyway). What she was able to offer was this – we can keep his muscles stretched out and then when the treatments are over and his brain starts communicating again, then his muscles will be ready to get stronger. If we don’t keep them stretched, they will begin to atrophy; then when treatment is over we would have to work against the atrophy before we could make much progress in the strengthening.

So here’s the plan. We concentrate mostly on the legs right now. We will manually stretch his Achilles tendons by flexing his feet on a daily basis. We are also getting him some braces to wear in his shoes to keep his feet in the neutral (90o) position, but also allow him to flex his feet. This should help his gait considerably.

We went over to get measured for the braces on Wednesday before heading home. It was a fun experience and Les got to pick out a cartoon character that they will put into the plastic that the brace is made out of. We’ll surprise you with a photo when we get them. They should be ready next week and we can pick them up on Friday.

The other “news” recently learned is that Les will have to go back to the 10-dose G-CSF shot plan. The Home Care Pharmacy dropped off his box with the G-CSF and Aranesp before we came home. I didn’t bother opening it because it was in an insulated container and was all taped up (the medicine needs to be refrigerated). When I got home and opened it up I saw 10 syringes of G-CSF and my heart sank. I had checked with someone earlier during our stay to make sure we were still on the one-dose plan, and now I have 10 doses. Well, frantic calls and emails were placed, and today, I learned that the doctor switched Les back to the 10-dose plan because the one-dose was not the best for him, and it was difficult to calculate and administer the proper amount since he was so small, and there was too much waste (I guess it only comes in adult size doses and they throw away 2/3 of it before giving it to Les). Anyway, we are stuck with 10 shots again. Luckily we have found a method that works for now. We wait till Les is asleep and then poke him really fast. He cries just a bit but never really wakes up. The next morning he asks if we gave him the shot, so I guess he doesn’t remember any of it. Please pray that this method continues to work because he will need 50 G-CSF shots before treatment ends (not to mention the weekly Aranesp shots).