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

Thursday 17 September 2020

Home is where the heart (and the clutter) is...


We're home! Got home last weekend after a quick and uneventful trip from Toronto. It's so good and so surreal to be back.

This time Ollie climbed the stairs on our front porch all on his own steam. Man, it felt great to be coming back after a successful transplant versus a relapse like last time we came home from Toronto.

Family helped us by packing and moving all of our stuff with a van (thanks Sonya, Carson and Christine! 😘) so we could just have Ollie and his commode if needed. 

We took a lot of stuff to Toronto since we knew we'd be there for about 3 months (and bridging two seasons) and couldn't go far for entertaining the kids given COVID and the stem cell transplant. Naturally we also acquired more Barbies and Beyblades (surprisingly still cheaper than our normal summer vacation activities) while away. 

We were also grateful to the Nava family (who we are bubbling with) who brought our Abby home and helped to unpack the truck while their girls let Ollie talk to them incessantly about his new Beyblades.

When everyone left soon after the van was emptied, Ollie asked for an Ollie Pizza from Gabriel's, this time half cheese and half pepperoni. 

We were sceptical as he hadn't eaten pizza since transplant and his tastebuds had still been off, but as usual he showed us...

He ate a whole slice with crust included and had same for breakfast the next day! 😂 

Most of the first days have been spent unpacking and trying to declutter and reorganize our house and lives. This will take a while. We've basically been away from home to all intents and purposes since last November when he was diagnosed, with short weeks at home or at the condo in between/after rounds of chemo, radiation and stem cell transplant. In the 303 days since diagnosis we've spent 131 days admitted to hospital, and a further 83 days outpatient at hospitals for bloodwork, tests and check ups. That's 214 days at hospitals, leaving 89 days not in hospital, but for about half of those we were in Toronto. 

So really we were home without significant cancer intervention for just over a month this year and I didn't even count the online Braille lessons, physiotherapy sessions, online consults with doctors, etc., which still happened in those 89 days. So very little time and basically zero energy to do anything significant at home for almost a year. Now I have to pace myself because I so desperately want to put things in our home to right like we are doing with Ollie's health. It's going to take a while, despite that. Fortunately I'm getting good at running the proverbial marathon when needed. And I have evidence of what's really important.

I went through all of our kitchen cupboards and fridge as I put things from Toronto away and threw out every opened and expired food we had after a year of hardly being here (and when we were, most often you lovely people fed us through the Meal Train and your constant spontaneous drop offs of delicious goodness!). Two kitchen garbage bags full! Also got rid of all opened flour, oats, etc. Basically anything that could have mould spores and make Ollie sick. 

Donated all unexpired, unopened snacks to Ollie's school for Breakfast Club (thanks for picking up, Siobhan!) as my two won't eat them since they're doing online learning and there's no lunch packing for this family (yay!!!). A nice way to help out other families, too since the School community helped us so much last year with their food and financial donations.

We have been having some fun...almost daily walks to the Merry Dairy (thanks for all of the gift cards, folks! We're making great use of them!) to encourage Ollie to walk more.

At first he walked a block...

Got an ice cream reward...

Now he's almost running the whole way (about 3 blocks) and pushing his sister for resistance!

He's singing and wanting to dance. Keeps trying to teach us all how to tango...

Most of the time happy to be together again.

We've played some board games and Beyblades...

Had our favourite Chinese (Cypress Garden!)...

Hung out with our felines...(lots of hand sanitizer after and using HEPA filters to keep things as clean as possible for Ollie)

He's settled in to start virtual classes and we're working up to having the stamina to be in from 9 am to 1:30 daily (not there yet). Also still working on Braille. He now knows all of the letters in the alphabet and can identify a $5, $10 and $20 bill (so don't try to cheat him! 😄). Today he learned how to write in Braille with his Brailler and is super psyched to show everyone his new secret coder! And his new Braille chess set and a deck of Braille playing cards arrived making it possible for him to play without mom being his eyes (thanks Amy!!).

Abby starts online classes Friday and finally got teachers assigned today. She's happy to be home, but was sad to leave the Navas where she stayed the last month. She's naturally nervous about starting her new class, social distancing and whatever other changes may be lurking around the bend.

Her collaboration with Why We Swab continues as they promote our story on social media leading up to World Stem Cell Donors Day this Saturday, September 19. She's also been working on an opinion piece she was asked to write by CBC! Should be online in late September. Her life education in all of this has been extraordinary.

Mario is catching up on physical work like repairing and rebuilding computers that he brings home to work on, so he's geeking out and happy to do more than just helpdesk support. He's uncharacteristically the calm one right now, trying to keep us all from getting frustrated with each other. 

I am finding my groove. Having a hard time carving out time to write (not possible over the last handful of days) and to research for some cancer-related projects. Trying to not strangle my beloved Ollie as he tries to micro-manage my days now that he's feeling better (LOL) and I "work" for him. 

I'm still processing the fact that he's well. I go into his room sometimes when he's sleeping and turn the light on (he's blind so it doesn't bug him!) to check that he's breathing and doesn't have a fever. His rosy pink complexion tells me he's well. His eyelashes and hair starting to grow back are signs that we're through the hardest stuff, but it's still hard to believe that a year that could go so wrong so fast is ending so well so quickly. 

We're all still pretty emotional and often have short fuses right now, but we're working on it. We have to frequently remind ourselves that the constant imminent danger has passed and we need to try to react smaller to everything. A tall order for a bunch of dramatic and strong-willed extroverts who have constantly been in fight or flight mode for almost a year. But we're doing our best and getting some help to muddle through. Just content to be home, figuring out the next new normal.


3 comments:

  1. These pictures are so beautiful, Dawn, and truly convey the strength and perseverance of your family. Ollie being well is truly news to gladden the heart and lift the spirit! Seeing him walking--running--well, it's priceless! Good luck to both the kids as they start school, and prayers and love, as always. xo

    ReplyDelete
  2. Ollie is looking great! Ice cream motivators...I wonder if I could use that at school?! So happy you are all home.
    Ms. Di

    ReplyDelete
  3. It must be great to be home! Maybe we'll see you at Merry Dairy one of these days (we seem to be there a lot too!). What a beautiful time of year to be coming home and please let me know if there is anything you need, errands run, etc. Sending hugs.

    ReplyDelete

We appreciate your positive thoughts and comments about our journey. If preferred, you can send us a private message using the Contact Form on this page.

Keeping the Family Healthy During and Post Cancer

When Ollie was first diagnosed I had a terrible upper chest and sinus infection. Likely exacerbated from the stress of testing and diagnosis...