To have radiation, Payton would need to be fitted with a mask. He had to lay on a table for about 45 minutes while the radiologist put a wet mesh-like material on his face, then waited for it to dry. We stayed with him the whole time and he was read a Magic Tree House book. He did an amazing job of holding still for that long, considering what an active child he was.
The first day of radiation was very emotional for Jason and I. The waiting area was full of elderly patients. Payton was the only child. In fact, we never saw another child in the waiting area the entire 6 weeks Payton did his treatments.
Payton would hop up on the table in the radiation room without hesitation. The radiologists would place the mask over his face and pin it down to the table. Jason and I would assure him we would see him in a few minutes, and out the door we went. We could watch him on a camera in case he ever needed anything. He never did. He always did great. It only took about 10 minutes, and most days I cried for that 10 minutes. What was my baby, my youngest, my last born, doing on a radiation table for cancer patients? I couldn’t wrap my mind around it. I still can’t. Payton could pick a few stickers when he was done, and would put them on his coat or shirt everytime. Sometimes he would give Jason or I one.
We stayed in a hotel a few miles from the hospital, during the week for Payton’s radiation treatments. We found lots of things to do. One day we went to the zoo. Payton especially loved the monkeys and we watched them for what felt like an hour. He laughed so hard at the monkey throwing his own poo. We all made monkey sounds and I asked Payton if he thought they could understand us. He replied, “I don’t know, maybe”, in a matter-of-fact tone. Another day we went to Frederick Meijer Gardens. Payton was quite bored there, but it was better than sitting in the hotel room all day. We took many trips to Krispy Kreme Donuts, Wal Mart, and had lots of swims in the hotel pool. Chuck-E-Cheese, SkyZone, and Dave and Busters were some of Payton’s other favorites. He loved playing arcade games and picking a prize to get with his winning tickets.
The last week of radiation, Payton complained his mask was hurting him. When he got done, we could see marks all over his cheeks where the mask had been smashing his skin. He had gained around 20lbs in just 5 weeks. His cheeks were very puffy and he was almost unrecognizable. The radiologists made a decision that we would try one more time with the mask and if it was still bad, we could try to stretch it. The next day, they pinned the mask into place and started radiation. On camera, we could see he was fidgety, which wasn’t like him. They stopped radiating to check in on him. When we got back in the radiation room with him, they took the mask off. He had been crying under the mask. My heart broke. Here’s my poor child who has been through so much already, and this has to happen. We told him he didn’t have to do radiation today. The following day, we felt we had no choice but to try to stretch the mask if he was going to finish his radiation treatments. This required Payton laying on the table for awhile so they could wet the mask, stretch it out a bit in the problem areas, then allow it to dry. Payton was refusing to do it. I couldn’t blame him. I didn’t want him to have to do ANY of this. No matter what Jason or I said, he was not having it. The radiologist tried to talk to him. I asked for the child life specialists to come try talking him into it. They hadn’t quite made it there yet and the radiologist said we could try another day. I said “Hold on just a minute…I’m going to try bribery.” She smiled and left the room. I hesitantly told Payton, “If you do this for mommy and daddy, we will take you to the store and you can get ANYTHING you want.”. He said, plain and simple, “I want a metal detector.”. I hoped they weren’t like $600 or something and agreed to get him one. Once he was on the table they started the steps needed to make the mask fit him better. He did great for about the first 20 minutes, then became very irritated. He began to cry. His cries turned into mumbled wails under the mask. I had to leave the room. I went in the hall and broke down. I hated that he had to go through this. He was 7. He should have gone to school that day, and played on the playground with his friends. Instead he was basically involuntarily being bolted to a table by his head, surrounded by hospital workers.
They were able to get the mask stretched enough to make it more comfortable for Payton’s last few radiation treatments.
Before his last treatment Payton wanted to get gifts for the radiation team who had been so nice to him. We went to Wal Mart and I asked him what he’d like to get for them. He said he wanted to get them crystals. Payton loved crystals, but where was I going to find crystals in Wal Mart? Our search began! We looked in the craft section, nothing. We looked in the home decor area, nothing. We wandered through the Christmas aisles and Payton spotted crystals! They were ornaments for the tree, but they were what he wanted to get them. Along with the crystals, he wanted boxes to put them in, so we bought gift boxes too.
Back at the hotel room, he made a beautiful card with the radiation team member’s names and a picture he drew of each one of them. He wrote on the inside, “Thank you for helping me. Love, Payton” (he came up with this on his own). He took the gifts in to radiation the next day and was very proud to gift them.
We were so relieved, yet afraid, when radiation was finally over. There was no “next step”. There was no “further treatment”. We had a choice to enroll Payton in a clinical trial, but which would be best? None of them had cured anyone of DIPG. Most were in phase 1, meaning they were just trying to figure out how much of a certain drug each child could take. The decision that lie ahead was almost paralyzing to our minds.
In the end, there was no right decision to be made. The what-ifs will always be part of my mind. What if we hadn’t done radiation, would he have lived longer? What if we had gone to New York? What if we had gone to Germany? Although I think about these things, I know in my heart we did what was best for our son, as he did not care for traveling a lot, and children on every trial have passed away.