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

Wednesday 12 February 2020

Steroids, Obsession and Exhaustion (Part 2)

Enjoying Valentine's cookies made by my dear friend and former boss, Ann.

Last night and today were WAY better than yesterday. The reduced steroids and new anti-anxiety meds are working. He slept most of the night, had a pretty good day and was in better control of his emotions.

He asked the Child Life Specialist, Maryse to do a few Valentine's crafts with him, had a good session with the physiotherapist (he's even been practicing his exercises), and even had a good chat with the psychiatrist.


When asked how he was feeling, he replied, "cooped up" and "far away from my friends". Based on this, Child Life and Psychiatry allowed him to have a special visit despite his isolation. He chose Catherine, who is a friend of the family's and has been Ollie's babysitter. As he explained, "...she's over 14 so can come to CHEO, but is still like a kid." So 16 year old sweetheart Catherine and her amazing Dad, Stephen dropped everything and rearranged their schedule to be here for him. Stephen took Ollie's stalker-like call today gladly and didn't hesitate to promise he'd make it all work. 

Ollie giving Catherine the Valentine and bracelet he made for her. This is my sweet and thoughtful boy again.

This family (including M-F and Francesca who have also been here every step of the way with us) are good people and have been so good to all of us throughout the last months. Definitely glad to consider them family.
Ollie is sleeping peacefully after a good day and I am writing and researching more drugs to inevitably fight with the insurance company about covering. 

I did met with genetics yesterday and neglected to share that, but will do so in another post soon. 

We have our video conference with Sick Kids Hospital on February 25 and will know more about next steps then. 

No idea when or even if we'll get home again before round 4 is supposed to start on the 28th. The doctors are hopeful that we might be able to get home for a few days. In the meantime, we're working on getting a few afternoon passes at least to get home for a few visits if we can. Will keep you posted!

Finally we, have lumbar puncture number 8 tomorrow. Hopefully 8th time is the charm to banish the lymphoma. 


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