We are one week away from radiotherapy, Shalev just turned 3 and we decided to see if we can “try staying still in the spaceship”
Today I am quite bummed, on Friday we got the bean bag prepped and he was doing so well. But today he just refused to stay still for the planning CT.
It can be so frustrating sometimes. If he only understood that if he could stay still for 2 minutes we could avoid 14 daily general anesthetics with all their cumulative side effects. But that is not something you can explain to a 3 year old, you just roll with the punches and just deal with 3 weeks being just a tiny bit more uncomfortable for all of us
we are a few months from tht and I am very nervous. My son is 4 and doesn’t understand that concept either so we will have to endure daily irritable boy as well. Any ideas that you come up with please let us know!
Now that we are 10 days in and have daily anesthetics, I guess my biggest tip is… don’t beat yourself up.
Shalev has been handling it quite well, we have been quite lucky, he has not lost his appetite at all and is super active. Some things that help
Try to practice a few games at home of “stay still and I will leave the room for 2 minutes” to see if you have a chance of doing it without the anesthetics
If it does not work out, keep in mind it will be harder on you then your son, all it means is that you will be stuck in hospital for 2-3 more hours every day. Shalev is jumping and running 3 hours after his GA, there are no side effects we can notice that are due to the GA.
We have a very cool poster where he sticks a sticker every day, it helps him feel like he is making progress and it is almost over.
Shalev has always been a late sleeper, we manage to squeeze in another partial meal at 9:30pm, he has a smoothie before going to sleep (and sometimes a croissant )
Being a child means you get to go first on the machines so going to sleep late means he is not even hungry at the morning, we directly transfer him from bed to the car for the drive to the hospital.
We are currently doing radio and our daughter is 3 and is not having GA and manages it with ease. We haven’t had an issues with her doing it without a GA. We did start getting Addison ready for the radio side of her treatment quite early on and practiced regually staying still for a short time at first then progressed for much longer times then the treatment would be and in different and sometime uncomfortable places ( because radio beds arnt comfortable they are narrow, hard and high off the ground) like the kitchen bench (only when we were confident she would be safe) and we showed Addison youtube clips to show her what the machine looked like and the noise it would make, there is a youtube clip we showed her often One of a Kind! A guide to radiotherapy - YouTube that was great she loved it and enjoyed showing it to others. we spoke about it often reminding her during radio she had to stay still like a statue. A small benefit we had is she hates GA’s so we told her (not in a negative way) that if she couldn’t stay still she’d need the white meddie that makes her go to sleep and she was determined not to have it so she practiced and is doing extremly well doing her treatment without the GA but we have been very lucky and she can do it if your little one cant thats ok too its about what ever makes it easier for your child no one else we all are doing the best we can and thats all that counts.
)