“Anxieties race as start date speeds upon us. Denyal still lingers but reality slowly sets in.”
In less then a week Aiden will start radiation. I try to imagine what it will be like, what will our days look like? Will he get extra tired right away? How long untill he losses his hair? I still feel like we have not prepared him well enough. I feel like there will be excruciating pain we do not know about. I feel like it will be like coming out of the second surgery all over again. The guilt for not preparing him better but we are unprepared ourselves.
Last week Aiden got fitted for his radiation mask. We took the long track from Cheo through the Ottawa U corridor to The Ottawa General to Radiation south only to find out we needed to backtrack and go to Radiation North. Once there, Aiden was moved from his chair to the cold, hard CT table. He lay on his back in what looked like a blue bean bag cushion with the back of his neck and head custom fitted into a mold specific for him. They then had him stay very still as they hook the bean bag to a “vacuum” and suck the air out forming it to his body. The whole time I tried to keep the mood light, pulling out smiles when I could and encouraging him with my words.
“Stay still hunny you are doing great, squeeze my hand if you need a break for a minute”
They asked Aiden what we would like his mask painted as – I had suggested Pickachoo and he gave a huge smile which I took as a yes. They then warmed up what looked to be a flat sheet of honeycomb and told Aiden to lay perfectly still as they placed it on his face. Telling him to close his eyes and it would be warm, not hot. Just before they put it on his face he gave my hand a huge squeeze, I told the team to give him a minute, after a short break we asked if he was ready again. It has been so hard with communication; even when I am pretty sure what he would say or feel I still doubt myself. I try to focus on making him as comfortable as possible and putting myself in his shoes
I could not imagine, as a 7 year old, having to lay perfectly still, on a hard surface, in a darkly lit room. Strangers around me as they put something over my face. I cannot even imagine how scary it must be for him
I was then asked to step out of the room while he went into the CT scanner. He was doing so good not moving, I have never been more proud of him. I could watch on a black and white screen him in the other room. There was a button I could push to chat with him (whenever I say “I am getting pretty good at chitty-chat-chat” he always smiles). The nurse was coaching me on what was happening. I explain it to him over the intercom, giving him encouraging words all the way through. On another screen in this room I could see the scan of his body. His body is severely crooked which I inquired about. They said he would have to perform the CT scan every time he went to radiation to make sure he was lined up with the markers and because as he progresses in this Physiotherapy the goal is to get his body straight again.
The actual scan did not take very long and soon enough we were back in her wheelchair on the way back to Cheo. To see Aiden so drained from the track to and not even getting the treatment yet is frightening. He is not the kid that ever wanted to go to bed and now all he wants is his bed. It is becoming very real the closer we get to treatment date.
Aidens passing has been incredibly difficult but a lot less difficult because of the love and support we have receive from family, friend and community. Thank you to everyone who has sent meals, condolences, and donations so I can take this time I need now to grieve and take care of myself and beautiful blended family. I am so incredible grateful for the support we have received.
Stephanie (aka MamaOutpost)