The Brave Boy and Therapeutic Clowns at CHEO (plus Mario photobombing)

Wednesday 27 May 2020

Have Faith and Cautious Optimism


Each day brings new determination and more strength. Ollie is doing his daily physio exercises and walking more. He is no longer carried anywhere and goes up and down the stairs on his own steam with some minor support from Mom or Dad. 

Today we got him a Fitbit for kids as his physiotherapist suggested we chart his steps daily to show his progress and challenge him to do a bit more each day. He's thrilled to have one like his sister! 

He walks to the end of the block and back now with Daddy without his wheelchair. A month ago he could barely walk 8 feet to the bathroom.

When he's resting Chewbacca or Minou are usually lying with him as if to calm him or give him strength somehow. 

Ollie and I started growing vegetables and flowers together last year inspired by his interest in the school's growing activities (growing tower, gardens etc.) and our participation in the school's courtyard beatification efforts last summer.  

So naturally there was no question that we'd plant again this year. Ollie was so proud of his tomatoes and lettuce last year that he's psyched to do it again this year. 

Last night he wanted to play board games and started listing off games in the basement he felt he could still play easily even though he's blind. He still beat me at Rock 'Em Sock 'Em, but I squeaked out a narrow win in Hungry Hungry Hippo! 
Afterwards he begged to go out on the deck to swing in the hammock, so he and I did. He's become quite a conversationalist again and I enjoyed just listening to him tell stories and explain his views on things. 

Abby's been having a few really emotional days. In this pic after she was upset Ollie asked her if she needed a hug. Heart melting...

She's been trying to work on a potential valedictorian speech (her classmates have the option to submit one for consideration before the teachers choose) and it's really made the end of her year and her time at St. George real for her. It's such a sad way to end a beautiful 8 years and she is struggling to process that while missing friends and worrying about her brother. She's struggling to stay engaged in school, not because her teachers aren't doing an amazing job, but because given everything she's been through this year, sometimes it just seems so unimportant to do math when your brother is fighting for his life. 

So I war between pushing her to stay motivated and simply letting her let go and have less stress. Problem is she's she's so conscientious that she feels guilty if she's not engaging, so we're still trying. 

Today the oncologist told us that the CT from last week confirmed that Oliver does not have any cancer in his body outside of his brain. This is very good news. Unfortunately we can't know what is really happening in his brain for 4-6 weeks after radiation. At that point his brain will have calmed down enough from radiation to allow them to see if it and the drugs have worked.

That said, she said it was a very good sign that Ollie has had an improved mood and energy levels in recent weeks and these likely indicate that the treatments are working. 

As I write this lying next to Oliver who is sleeping he just laughed out loud while dreaming! 😊

Mario is nervous about saying or believing that he is really better until we have proof. So we've all agreed that we have faith and will put all of our energy into that faith that God is making him well. 

Starting next week we'll have only one appointment at CHEO per week to get his dressing changed, bloodwork done and overall check ups. The rest of the time we get to just enjoy the summer and as long as he stays well we get to be home together. In 4-6 weeks we'll get that brain scan and hopefully see that he's in remission. Even he's started talking like as soon as he's well again we're going back to Toronto to get his stem cell transplant. This is a far cry from the depressed boy who couldn't wait to leave Toronto a month ago and said he was never going back for stem cells. 

There's a tendency not to want to celebrate the little victories for fear of whatever might be lurking around the corner on the cancer slaying quest, but life is short and you need to feel the joy even if temporarily. So tonight we informally celebrated with a Beyblade tournament with marshmallows and Jiffy Pop on the deck. We remain cautiously optimistic and committed to letting our faith get us through the next 4-6 weeks as we wait more.

2 comments:

  1. I celebrate your little victory with you and will keep faith as you await more news. So happy to hear Ollie is feeling more positive. His "laugh out loud" dream...a precious moment! Thanks for sharing as we send our faith and positive hope your way. Ms. Di

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  2. I love the picture of Ollie gardening! There's nothing quite like getting your hands into the soil and helping something to grow. And you should FOR SURE celebrate the positive moments and milestones, because God knows you've all earned them! We're keeping faith and prayers with you as we wait in hope. xo

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