Wednesday, November 14, 2012

Wednesday, November 14, 2012

I'm happy to report that despite our worry and subsequent preparation for Sandy, we had no flooding or damage. Surprisingly, we didn't even lose power. Our hearts and prayers go out to all of those who lost so much as a result of the storm.

This two and a half year journey through valleys of despair and peaks of joy and hope has been mentally and emotionally exhausting. Ever since returning from Houston, I had been feeling worn out, and was having trouble finding energy to do even the most basic household tasks. After receiving the great MRI results, and once we were sure our basement wouldn't flood as it had the year before, I finally worked up the motivation to put the basement, and the rest of the house, back in order. As I moved things back into the basement, I used the opportunity to go through things again to see if there was anything we didn't need anymore. I've noticed that in the periods of time when Collin is stable and doing well, I have this need to simplify and organize; it's almost as if I'm trying to get things back in order in preparation for the next period of time when they could fall apart again. The scan in October was good, so that means I have three months before the next scan that could potentially turn it all upside down again. It's not like I'm expecting to get bad news in January, it's just that we've heard "no evidence of disease" before, only to have the next scan show relapse and send us into a tailspin. It's happened twice, and it is extremely difficult to let go of the fear of it happening again that lurks in the shadows. Anyway, I'm finally starting to feel like I'm back on my feet again, and that hopefully life will soon be more "normal" again.

Collin is doing very well. His fatigue continues to improve, and he has a renewed interest in playing. He is great company and a lot of fun to be around every day. He finds humor in things, and keeps me laughing. He is loving and gentle and sweet. I've noticed that he can be very reserved around other kids his age, probably because he's never had much of an opportunity to be around kids other than his sister and a few family friends. In the new year, I will try to get him involved in some social activities with other kids so he can make some friends his own age. I will also get him back into his therapies so he can continue to make progress.

I started Collin back on the appetite stimulant Megace, because he hasn't regained any of the weight that he lost over the summer. He is also finishing up his first round of maintenance medication, which consists of two weeks of two medications, and then two weeks off before starting them again. He could do up to twelve rounds like that. The first medication is cis-retinoic acid, aka Accutane, which he has been on before. The Accutane dries his skin out, so I use moisturizer and chapstick to try to lessen the dry, flaky skin. The second medication is Vorinostat, which he has never had before. Thankfully he doesn't seem to have experienced any side effects from this drug so far, but it can lower his platelet count and his immune system, so we go to clinic every week to check his blood counts. Since his eye surgery is coming up after Thanksgiving, we will wait for a few weeks after the eye surgery to start the second round of maintenance medication so that nothing interferes with his post-surgery healing.

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