Ethan and I went in for his simulation today and things didn’t go as smoothly as we all had hoped. The mask that they had made for him 2 weeks ago shrunk and didn’t fit very well on his head. Second, when they did manage to finagle the mask on, it slightly constricted his airway. We all agreed we wanted him to breathe so about 1-1/2 hours into the appointment, his Radiation Oncologist, Dr. Sang Lee, opted for a “do over”. They re-positioned his head and made a new mask that would keep his airway fully open. They then did another CT Scan and will re-create his radiation plan today. This was pushing their envelope a bit, but they assured me that it would not be rushed and if they needed longer, they would call to adjust the schedule. As it stands now, we’ve moved everything by just one day. We’ll go in tomorrow for another shot at the simulation and then start the actual treatments on Thursday, 10/3. I was able to look at the Radiation drawings and talk them over with Dr. Lee. They were using 3 radiation beams, each shaped to his tumor bed. One enters from the top towards the back of his head, another from the left, and the last one comes in from the right and angles towards the back. They were able to avoid his eyes (which is good) and felt like the neurological effects would be minimal. He may have memory problems and lowered intelligence down the road, but overall they do not anticipate anything too pronounced. I’m not sure how much of this will hold true once the new radiation plan is created. It is, after all, a brain tumor, but we’re desperately hoping Ethan comes through unscathed.
Ethan got to bring the old mask home and is playing with it now. He got his pumpkin yesterday and now his “Halloween mask” as he calls it, so he’s warming up to it a bit. I hope it will help, as he was quite apprehensive today. It didn’t help that he had a bad experience with his MRI yesterday (no results yet). The Anesthesiologist wouldn’t use propofol in his central line and choose instead to gas him to sleep and use an IV in his arm… Ethan was terrified and remained frantic when he woke up. I was quite upset by it all and really think that whole experience made things more difficult for him today. Our Anesthesiologist this morning was fantastic and mentioned that he would be having a word with the other…
Everyone in the Radiation Department fawned over Ethan and even surprised him with his favorite kind of donuts – vanilla with sprinkles! And most important, of course, is that they showered him with fireman paraphernalia. I have no doubt he will warm up quickly to them. At Ethan’s request, they are planning a big waffle party for him on his last day of treatment. He was a little groggy when he was talking about it and also mentioned having cinnamon rolls and licorice. I swear I feed him more nutritious food at home… so I’m not sure where these menu items were coming from!
I’ll let everyone know how his radiation progresses – hopefully smoothly.
Kim.