Friday, August 31, 2012

Last week the oncologist had talked about starting the next course of chemo, but then we found out that Collin's platelet count was too low. This week, we found out that his counts had gone up on their own, but Dr. Vats felt that doing the chemo right now during radiation would hit Collin's counts too hard. Dr. Comito agreed; we don't want Collin to become dependent on weekly transfusions. Plus each time we give him more chemo, we increase his chance of developing a secondary cancer like leukemia. So we will wait until after the radiation is complete, see what the post radiation MRI shows, and decide whether to do the chemo or go back on maintenance therapy.

Wednesday was Collin's final session of full craniospinal radiation, and Thursday he started the first of 10 sessions of what's called a boost. Now, instead of getting a consistent dose of 36gy to his entire brain and spine, he will be getting a higher dose of 54gy to certain areas of his brain only, where the new tumors had grown. His last boost will be on September 13, and then the radiation will be done. Overall, Collin seems to be handling the radiation pretty well...he hasn't been nauseous or vomitted in a while, he doesn't have any mouth sores, throat pain, etc. but the skin along his spine, the back of his neck, and especially on his head is red and looks sunburned. There are even small areas on his ears and head that look blistered. Thankfully they don't seem to be causing him any pain, but I'm putting aloe all over his head and ears to help his skin heal.

This week, Neya would have started third grade if we were home. I feel bad that she is missing out on being back at school, and with her friends, but I don't regret keeping her and Collin together for the rest of his treatment. I just hate that we've had to make the decision in the first place. She has been journaling, reading, and working on math and spelling with my mom while Collin and I are at his appointments. Thankfully her teacher got some of her schoolwork together and Bill has sent it down, so she will have that to work on as well and she won't get behind.

We had a great, but way too short, visit with Bill, who flew home Tuesday. Collin doesn't have radiation on Monday (Labor Day), so he has a three day weekend during which he can eat whenever he wants and take regular baths. On our way home this afternoon, he said, "My tubie gone. No more sponge bath! Yay, me!!!" I'm hoping to catch up on email, thank you notes, etc., and just having some down time this weekend. We're coming into the home stretch, and are looking forward to getting home and having the four of us together under one roof again. It may sound strange, but as much as I'm looking forward to the end of Collin's treatment, I am also very apprehensive at the same time. Historically Collin's cancer has responded well to treatment, but then comes back. When I think of the upcoming MRI, and the ones that will follow, I feel sick to my stomach. If the cancer returns after the radiation, I don't know what will be left to try. I'm really struggling with not letting fear get the best of me.