We've had a couple of good days! Ollie's energy was up, he was ravenous (eating everything in sight) and he was highly motivated to have some fun.
Today he was up early and walked to the playroom on the other side of the ward and back. This may not seem like a big deal given 42 days ago he would have been in.constant movement, almost bouncing off the walls all day. However, considering all he's been through, the fact that he's hardly been out of bed to do more than go to the bathroom and maybe explore his room a bit, that he's doing physio exercises to get stronger again and to work on his balance and uses a wheelchair to go anywhere beyond 10 feet, this is huge.
He also wanted to go for a ride too the gift shop and bumped into the Lollipop Guild (Molly Penny, Dr. Tiny and Yippee) as they were giving out candy.
It struck me that this was a perfect bookend as on his first day of chemo Molly Penny and Dr. Tiny were there and also today when he started what we hope will actually be his last round of chemo at CHEO (because after stem cell transplant as long as it works and there's no relapse, this would be his last at CHEO).
We had a sweet and unexpected quick visit from Samar, who brought some treats and a cool new hat (Ollie later insisted on wearing it so far down that it bent his ears and made him look like Dobby!). She lived this experience with her son a handful of years ago and I am grateful to her for her understanding and advice.
Ollie enjoyed playing Beyblades with CHEO volunteers the last two days.
He also felt motivated to invite another patient to come and play with him. He had planned and organized everything to hold an arcade event with a bit of help from Child Life. Unfortunately since Ollie still obsesses quite a bit when he can't control things, we were trying to keep him from charging in and demanding that his me friend come out when the poor kid wasn't feeling well from chemo, so we agreed he could write him a letter. He hasn't written more than his own name in 6 weeks. With a bit of assistance he was able to write every word on his own steam.
Abby has been feeling under the weather, so we've been away from her and Mario a few days. Training for Toronto I guess. Hard on Ollie and I'm not looking forward to only seeing them certain weekends for up to 3 months. Mario could take more time off and Abby could attend school at Ronald McDonald House there, but given its her graduating year, we know she wants to be with her class and friends and be as normal as possible.
I've been starting my research on Sick Kids Hospital, radiation, Graft versus Host Disease, etc. Met two parents here now who have been through stem cell transplant there, so lots of good advice.
I've also been meeting with vision loss specialists from CHEO, the Children's Treatment Centre and next week I meet with CNIB. Turns out there are lots of resources and although we're all still hopeful that his sight will come back, I need to find resources to help for now and future. I am very mindful that here Ollie had context because he was able to see everything before. In Toronto he will literally be experiencing everything blind for the first time. It's scary for me to consider all of the stuff coming at us next, so imagining that I am seven and have no idea what is coming at me would be terrifying.
