Friday, December 20, 2013

Chemo Santa

Today's chemo was more or less like the others. The conversation with the doctors revolved around his NONSTOP appetite and the continued behaviors that we see. As far as the appetite goes, the doctors said that could be a good sign that the chemo is working. He said that sometimes, with tumors in the hypothalamus, kids experience decreased appetite so when the tumors shrink, they see an increase again. I guess we will find out in a few weeks when he goes in for his MRI.

The behaviors have been something we have talked about for years now. We put that on the back burner when we started chemo so that we could get him stable on treatment. Now that he is doing well and hopefully getting better, we brought it up again. Behaviors of concern are general inattention, hyperactivity, lack of impulse control, etc. All very common with NF. Basically, we can't take our eyes off of him for a second without him doing something destructive, unsafe or otherwise undesired. The doctors suggested a low dose med similar to Ritalin. I swore I would NEVER medicate my child. As a kid, I was on Ritalin and later Adderall, and I know first hand what that does to you. I didn't want that for my kids. After seeing Logan struggle and know that he really can not control himself, I know that something needs to be done. We have tried everything (and given my job, I like to think I know a thing or two about behavior management), positive reinforcement, negative reinforcements, rewards, punishments.  Nothing seems to work.  I want him to be safe. I want him to be available to learn. I want him to be able to stop and think and make decisions based on what is right, rather than what he thinks first. We are going to give it a try and see if it makes any difference. Hopefully this will help and allow us some flexibility to provide Logan with the independence and learning opportunities that he needs. 

Today was also a great day at the clinic for the kids. When we arrived, we were greeted with a Christmas tree surrounded by probably hundreds of presents. These presents were donated by the family of a former patient (I assume the same one I mentioned months ago that gave out goody bags to all the chemo kids on their deceased daughter's birthday).  All of the kids coming through the clinic got to pick out their own presents. Logan picked a keyboard, or compiano as Logan calls it. In addition, there was a holiday party for the inpatient and outpatient chemo kids with food and cake and more presents and SANTA!!  Logan was so excited to go see Santa, he even woke up from his Benadryl induced nap for it.

All in all it was a great day for Logan at chemo. One more treatment before his next MRI where we will hopefully get some good results.
Hat head and a mouth full of cake

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