Friday, July 27, 2012

Overall, things have gone very smoothly so far at MD Anderson. The whole medical center in downtown Houston, where MD Anderson is located, is very large and consists of many different hospitals and clinics. Things seem very organized, and we even have access to Collin's appointment schedule and records online.


Thursday we went to MD Anderson Cancer Center for the radiation consultation. We met with Dr. Mahajan, the radiation oncologist who will be overseeing Collin's radiation treatment. Collin will have 28-30 radiation treatments, under anesthesia, each one lasting about an hour, Monday through Friday, for about six weeks. The first four weeks will be radiation to his whole brain and spine (36 CGE), and the last two weeks will be a higher dose (54 Gy) "boost" delivered to the areas where the relapsed tumors currently are. Possible side effects during radiation include hair loss that may take a long time to grow back and may grow in patchy and/or a different color; sunburn-like skin irritation on the scalp and spine; nausea/vomitting; and low blood counts that may require blood transfusions. Side effects that may occur in the weeks, months, or years after radiation include shorter stature due to damage to the spine and pituitary gland; cognitive delays; hearing loss; fatigue; and secondary tumors in the brain or spine.

Today got off to an early start because Collin had to have anesthesia this afternoon for his radiation simulation at 2:30 pm. I woke him at 6:00 am so he could be finished with breakfast by 6:30. Between 6:30 and 10:30, he was only allowed 4 oz of clear liquids, and then couldn't have anything to eat or drink after 10:30. Despite not being able to eat all day, he handled it well. He was put to sleep, had a CT scan, and was fitted for the metal mesh mask that will be used to bolt his head to the table so that it cannot move during the radiation. Then when he woke up, we sat in the waiting room and fed him lunch before the drive back to my parents' house.


Originally we had planned that Collin and I would stay at Ronald McDonald House once his treatments started to reduce our commute time back and forth, especially during morning rush hour. However, so far his radiation is scheduled after lunch and the drive during that time of day hasn't been too bad, so we're going to see how it goes commuting every day. If necessary, we can always make arrangements to stay at RMH at a later date.

We had been under the impression that Collin would be admitted Monday for his IV chemo, but although we have questioned everyone we've spoken to, we have not been able to get any information about this. However, Collin's next appointment is now on Monday, with a pediatric neuro-oncologist. During our consult with Dr. Mahajan on Thursday, we had discussed whether Collin would be given any chemo during the radiation (sometimes certain chemos are given during radiation to further sensitize the tumors to the chemo). She wanted to talk with the neuro-oncologist, because Collin has already had a LOT of chemo in his short life. We also discussed how the low blood counts and possible neutropenic fever following the IV chemo could delay the start of radiation. We are now speculating that the IV chemo planned for Monday may not be given, and instead a different chemo may be given with the radiation, which is scheduled to start Thursday, August 2. I guess we'll find out Monday.

On Tuesday Collin has an appointment for neuro-cognitive testing. This will provide a baseline against which future periodic testing can be compared, to see how the radiation affects him cognitively. I also noticed on the schedule that there is a baseline hearing test scheduled in the near future. Between radiation appointments, weekly clinic appointments, and other miscellaneous appointments, our time in Houston will be pretty busy!