Thursday, August 16, 2012

Wednesday, August 15, 2012

As you can imagine, by the time I get home each day, eat dinner, and get Neya and Collin to bed, I am exhausted and have been going to bed as well. Then, at the hospital and proton center, I haven't been able to connect to the internet since Saturday, so that's why it has taken so long to get these updates posted.

Collin had his 9th radiation treatment yesterday. I have been talking to the Child Life counselor, who is a wealth of good information. Collin has been asking questions about radiation, and I've been answering them the best I can in a way I think he can understand. But he's also been telling me he doesn't like the medicine that puts him to sleep (propofol) and that it, or the radiation, scares him. Wendy was able to describe to me what children see and hear as they fall asleep, and this insight will help me be able to ask more specific questions about what bothers him so I can try to help him feel better about it.

After radiation yesterday, Collin was seen by the oncologist who is following him here. We had been discussing whether Collin would have any chemo during his radiation, which could help sensitize the tumors and cancer cells to the radiation. Dr. Vats spoke with Dr. Comito, and they have decided that one of the drugs they were considering would drop Collin's counts too low, and the other drug will be used as a maintenance drug for a length of time after the radiation, so they don't want him to develop a toxicity to it by using it now. Instead, towards the end of the course of radiation, Collin will do another round of chemo like the last three he has done, consisting of ten days of oral chemo, and then a short inpatient stay for Cytoxan. I am unsure whether this round of chemo will be completed while we are still here in Houston, or after we return home.

Last night out of the blue as we were sitting in church, Collin's nose started bleeding. It bled on and off for about an hour, and while we were holding tissues under his nose, Collin became very drowsy and difficult to rouse. I called the after hours emergency number because I was concerned that the bleeding wasn't stopping, and that he was becoming lethargic. The covering resident spoke to the fellow, and although Collin's platelet level was fine according to the previous day's labs, he advised us to take Collin to the nearest emergency department to have him evaluated. By the time we got Collin into the car, the bleeding stopped, and he was his normal self. In the end we decided that he was just tired, and had been falling asleep because he finally relaxed when we made him sit still, so we decided not to go to the emergency department unless the bleeding started again over night. Thankfully it didn't!

Today while Collin was having his radiation treatment, I was talking with a mother who is also having radiation to her brain. I have talked with her a few times, and she has described some of the side effects she has has experienced during radiation. I told her about Collin's nosebleed last night, and she told me how the radiation makes her nose burn and feel very dried out. Her eyes and mouth are also very dry from the radiation, so she uses saline nasal spray, eyedrops, and sugar free candy throughout the day. Tonight I used saline nasal spray on Collin, and although he screamed when I gave it to him, when I was done he said, "That feels better. That's not so bad." I wonder if he'll remember that the next time I give it to him?

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