It's the first R-day and it's now T minus 6 days to transplant. Last night Ollie actually slept all night, for 14 hours (we've finally figured out what's happening with his sleep, but more on that later) so he was in a great mood this morning and ready to tackle radiation.
I've been so afraid that he'd relapse again before we got to this point and have been emotional and filled with gratitude for everyone who and everything that got us to this point.
We were met at Princess Margaret Hospital by Susan, the Sick Kids radiation coordinator. She's been doing this job for 32 years and honestly knows everything about how to get kids through radiation. Last time we didn't get to meet her because she was on vacation when we were there for the original radiation planning. Today she told me how pleasantly surprised she was when we made it back after relapse. Another indication of how rare it is to get a second chance at this.
She is the perfect blend of sweet and tough. She knew exactly when to encourage Ollie and when to be tough with him to get him to do what was needed and was a huge help to us today. The team of technicians were also helpful and kind to Ollie. Given he had two sessions today he had two different teams, but Susan was there both times, so it was a long day for her, too.
Ollie was very relaxed in the beginning and very cooperative. The treatment is done in 6 parts. Three on his back (head, torso and legs) and same on his front. He easily got through the first 10 minute treatment on his back, but when we went in to shift his bed to do his torso he got upset that it wasn't already completely done!
It took a bit of convincing, but we finally got him to calm down and finish the treatment.
Susan had a radiation chart and puffy superhero stickers (so that he could feel them since he can't see them) for Ollie to mark off each of his sessions.
After the morning session we walked back over to Sick Kids to be checked out by the Bone Marrow Transplant Unit's Nurse Practitioner. She was happy that Ollie's vital signs were fine and he was feeling okay. She said because of this and the fact that we are living only a block away, after he had his dressing changed we could go back to the condo until we needed to go back to Princess Margaret for his 3:30 pm session.
He was not happy about the dressing change...
...but as usual he got the hard thing done and we went to our home away from home...
...where we snuggled and rested all afternoon.
At 3 pm Mario drove us back at Ollie's request because he was pretty tired.
During the afternoon session they had to do some quality control, so they taped some little ziploc bags with microchips on them to his chest and later his back. These will apparently measure the dose the machine is giving him to ensure he gets the correct amount. He was not thrilled about taking the tape off, but it comforted me that they're doing QA.
He slept through the first three scans on his back this afternoon, but wasn't happy when we had to wake him to flip him to do his back. After convincing him to just do it and go back to sleep, he finished the last three, sleeping again.
Daddy and Abby picked us up (it was already after 5 pm!) and we got home to find a package with the next book in The Dragon Masters series that generous friend Jennifer sent to him! So we read two books and snuggled some more.
Daddy also finally agreed to shave his overgrown cancer/COVID-19 beard (which the kids and I have crowned, the "Bacteria Beard" given how often it catches food! Ewwwww!) for Ollie because he was a radiation champ and has been asking him to shave it.
This made us all happy! 🎉
Tonight he was feeling a bit nauseous so he's taken meds and slept.
We did find out today that he is suffering from Somnolence syndrome. It's a side effect of his earlier brain radiation, making him super tired and not at all hungry. Susan the radiation coordinator helped us to figure it out today and said she'd inform the BMT team that this is what Ollie is experiencing.
So our strong-willed, brave, determined, warrior has made us proud, yet again. Although all of this often makes me the mean mom who forces him to do all of the hard cancer things and he gets mad at me, he is always quick to calm and apologize for his anger. At the end he always just wants a hug and to snuggle with his mama to know he's loved and all will be okay in his world soon.
