10. Love Will Carry You

Today is day 21 of consolidation. It feels like we’ve been here so little time when we split it into chunks, blocks, piece by piece. Mercer so far this block of treatment has had one IV chemo, three lumbar punctures with chemo given in his spinal fluid (this is called intrathecal or IT if you ever wanna sound sophisticated) and he’s had a daily oral medication. The cool thing about this block of treatment is that there is a nice lull built in. From day 16 to day 28, there are no lumbar punctures, no IV drips, no procedures: just the oral medication. Feels so good to be catching our breath a bit, stretching out, relaxing, unwinding. His body has adjusted, his bristly hair is growing in. He’s trying new things and finding his groove and is basically king of the castle here now.

His energy has been great! He’s been doing art and racing RC cars and smashing the hell out of drums. Building 900 Lego sets, charming the front desk staff, making friends in the kitchen as he chops up his daily snack himself (right now it’s grapes, strawberries, and cucumber. He’ll literally slice them all himself and plate them and then go annihilate 20 slices of cucumber !) Just yesterday he decided to make friends with a crew of kids about aged 4-10. Many of them have been here longer than us. Sibling sets and only kids and a rag tag group of wild things roaming around. The closest comparison I can think of is “camp brats” – the kids of summer camp staff who run around knowing every nook and cranny and generally doing whatever they like.

It’s so nice to have a rhythm and routine and to see him bubbly and goofy. It can be tempting to wish we were home since he’s so “good” but all it takes is one bad day or one bad moment and all those daydreams disappear in an instant replaced with immense gratitude that we’re close to the doctors and nurses who know him, his body, his blood. We’re in exactly the right place.

I got to glimpse a paper with a roadmap on it — a complicated web of treatment plans and tracks, hierarchies, flow charts. I could see how far we’ve come, and spy what’s up ahead. It was the first time since the very beginning that I got more than a half-second glimpse at it. For the first time in 63 days I got to see a list of the blocks of treatment Mercer will* get and what order, and how long.

*as always, there is a small chance the plans will change so it feels illegal to speak in absolutes.

The next block of treatment is something super new and pretty exciting. There is an immunotherapy that is very successful with the type of leukemia Mercer has. It’s easier on the body than the chemo meds and it improves his chances of staying in remission by about 3% (from my very basic understanding so don’t quote me on real figures— just know that the odds are improved haha). It’s a continuous IV which normally would require a lengthy hospital admission, but the meds go into a bag, with a pump, into a backpack to be worn for 28 days and that means he can stay at RMH. He can play; he can walk around without an IV pole; and he can be a kid! All we’ll need to do is go into clinic every three days to have the med bag refilled.

It’s been studied for years but it’s so new to the protocols that kids diagnosed even 6 months ago didn’t necessarily have this in their plan. We’re so grateful that Mercer can get an even better chance at getting and staying well. How cool and amazing that they’re constantly improving and getting the very best for kids? How fantastic that people are prioritizing ways to help kids get well without limiting them to a hospital bed. So many cool innovations! If you want to google it- it’s called a “blina bag”.

The time is ticking away. Somehow it feels like it’s been forever but no time at all. I close my eyes and I can’t quite picture my bedroom at home. I’m used to buying my groceries here now, the address here is the preset for all my online shopping, I know exactly many stairs between our room and the main floor. I forget what clothes are in my closet at home. When Mercer says “let’s go home” when we’re finishing at the clinic, he means RMH. There is a bit of heartache in that. But mostly there is comfort and relief.

I’ve got our room door plastered with his art and mine. I’ve been colouring in a simple, cute colouring book and folding paper flowers, been reading books and hanging out in communal living spaces, sharing life with almost-not-quite-strangers. Brushing shoulders with the same people days on end, knowing about a kid’s cancer journey and maybe not even knowing their mom or dad’s name. One of the front desk staff told us we were one of the first people she checked in. We’re buddies now- bonded in this strange way. She is doing her early childhood education degree and works with kids in another job and we smile and smirk at the same things.

I’m sitting in the video game room as I write this. Watching a crew of boys with shaved heads chat about Godzilla, and Marvel, and playing Tag and whatever else boys talk about. Kids are kids, even here.

I’ve had ample time to read which has been amazing and it’s helped me spend less time on social media which has also been surprisingly nice. I notice I go to scroll and everything makes me grimace or roll my eyes or feel an instant spike of stress. One of my few shining spots left in the internet is Kate Bowler.

She is one of my favourite people that I don’t know. She’s written about the real things and the hard things and I just love pretty much everything I’ve ever heard her say. Strangely enough, I found her when I was going through a hard thing and she had been writing about her hard thing — colon cancer as a new mom. Now cancer is in our story too and her words are even more valuable to me than they already were.

Just this week she posted a blessing for “finding your way as you go”

Maybe something here will speak to you too, wherever you’re at. And maybe not. And that’s ok too. But I’ll leave this here to wrap this up 💛

“Blessed are you, imperfect, gorgeous you, with nothing more than this moment’s honesty, offering what you have, your incomplete self, your half-formed thoughts, your unsteady hope.

May you release the “perfect plan”, the comforting myth that everything works out.

Instead, may you find grace in trying— knitting together days as they unravel, stepping forward even when the path is unclear.

Blessed are you who ask for help, not for certainty or fixes, but steadiness to take the next step.

May your courage rise – fortifying you to try and try again.

Moving forward, not because you know everything, but from knowing that love will carry you forward.

This life is uncertain, but you are not alone in it. May you find strength in the mystery and peace in the unfolding of today.