Today we went to meet the radiation therapist. He is a pediatric- neurologist- oncologist- radiation therapist. Basically he specializes in irradiation of brain tumors in children. He is a very smart man.
After the appointment I am a little less freaked out about radiation, but also more freaked out- if that is even possible. I feel more comfortable with the machine and the process. I feel confident that this step in Jackson's process will be very effective in shrinking the tumor. The part that I am more freaked out about is the long term effects that the irradiation will have on Jackson. Because his tumor is right next to his pituitary gland there is a great chance that he will have problems with his growth hormones- but we won't know about those problems for years to come. His hearing may also be effected greatly from all of the radiation. Among those side effects, there are also possibilities of learning delays and challenges for Jackson's cognitive thought processes.
During our appointment we met with the doctor, then we went through what they call "simulation". They took us back to a CT scanner and planned to make a mask for Jackson that he will wear during all of his radiation treatments. He is scheduled to go through 30 separate treatments during the next 6 weeks. While he gets the radiation he has to lay perfectly still, with out moving even a millimeter while they point the powerful x-ray machine at his head. To insure that he can hold his head perfectly still, Jackson will wear a mask that is custom made for him. The mask is then bolted to the table.
The process of making the mask was fascinating to me. Jackson was so very nervous about the entire thing, and after lots of tears the amazing staff decided that they should make a mask of Brian so that Jackson would know better what to expect, and so that it wouldn't be so scary.
Brian laid on the table, and Jackson helped Tarali get the mask ready. The mask was a flat sheet of plastic that is heated up in a pan of hot water. The hot water makes the mask pliable, and then the mask was stretched over Brian's face.
Brian didn't mind the whole thing, but poor Jackson just cried through the whole process. He said at one point "this is the worst day of my life" and "I am done. I want out of here." He also said that he couldn't breathe. The entire process took about 5 minutes, and to be honest, it was pretty sad to see my boy strapped to a table, miserable and I couldn't be of any help or comfort to him.
After it was all over, things were happy again though, because Jackson and Brian were now "mask buddies".
Jackson is pretty excited to go back, but only because one of the doctors (Dr. Watson whom we've never met) is quite the artist, and he paints the masks for the kids who have to undergo radiation. Jackson said that he wants his mask to look like Finn McMissile from Pixar's Cars 2 movie. I am pretty excited to see what Dr. Watson comes up with.
After the drama of making the mask we got to go and see a room very similar to the one that Jackson will go into while he gets his radiation done. The people the hospital were amazing with Jackson. They let him play with all of the buttons, and move all of the equipment around. He got to go on a ride on the machine, and all of the exploration makes me think that he will do great during his radiation treatments.
If he can't hold still for the radiation, they will have to sedate Jackson every single day. I really hope he can handle it, I don't want to have to put him through that every day. Also, if they have to sedate him everyday our appointment time will change from 15 minutes everyday to around 1 hour everyday.
Jackson has a "dry run" scheduled for next week, and if he can do the "dry run" with out sedation then they will proceed, but if he can't hold 100% still, then we will have to change hospitals, and appointment times. Radiation treatments are scheduled to start on Tuesday, September 6th.