17. Big Ol’ Mess

Mercer is incredible.

I’m just continually in awe of him. He’s charming, funny, quirky, brave, agreeable, cute, silly, loving, cuddly, and just the best almost-five-year-old anyone could meet. He’s 22 days into this treatment block (delayed intensification) and his body is starting to feel and show it. His face is a little plumper from the steroids, his mood a little more quixotic, his hanger a very real force in our lives haha. The muscle aches and fatigue have settled in and he spends a bit more time cuddling and sitting in the wagon. No nausea, thank goodness! He’s handled the constant chemo so easily which constantly amazes me. How can his little body just keep going?! Kids are unreal.

Chemo attacks the fastest dividing cells (cancer cells) and it also affects other fast dividing cells in your body… like your mouth and your GI tract. So Mercer got his first mouth sores. Called mucositis, it’s the aggravation and sometimes infection of the delicate membranes in your mouth and digestive tract. I was worried he would end up getting worse and be unable to eat properly so in fear of having him go inpatient for a few days’ stay, I called in reinforcements. Enter Grandpa Rondo. He swept in and kept everything together. He would hate to have the spotlight shone on him so I’ll just say this — he’s the perfect guy to come help out at RMH. He’s amazing and friendly and joyous and helpful and he’s everyone’s collective dad here now haha. 🩵

Thankfully Mercer rapidly improved with some extra care and attention to his mouth, but we were thrown a curveball. Vance developed a rash and fever. Normally this wouldn’t be a massive deal as he wasn’t uncomfortable— but when you live communally with immunocompromised kids — you don’t take chances. The rash wasn’t typical: it was actually petechiae. Which, if you do any googling, is a scary thing to see in combo with a fever or when there is leukemia in the family. So one trip to the ER, bloodwork, no answers; a follow up with dermatology, more bloodwork, and two Covid tests later and we had no answers. We literally don’t know what it was. It was so frustrating and mentally exhausting. I am so grateful he didn’t have something like hand foot and mouth or mono— but to not know is also just plain crappy. All I could do was sit back and do extra laundry and sanitize everything and pray Mercer didn’t get whatever Vance got.

To our massive surprise, Vance turned a corner and was completely fever-free and his skin returned to normal sooner than expected. I was sweating at the prospect of spending days on end upstairs isolating, so to see him bounce back so quickly felt like a miracle!

And the miracles continued… Mercer had a check in today to see where his blood counts are at. His mouth sores are gone, his energy is low, but incredibly his hemoglobin and his platelets are still good! His neutrophils are almost zero which means more hand washing and no big outings. Easily accomplished! And he didn’t need a transfusion today which makes for a much shorter clinic visit and one less poke. He’s officially on a break week in this block of treatment. It’s giving his little body time to recover and hopefully his neutrophils can rise. It’s likely that when we check him again in a week that he’ll remain too low to move onto the second half of DI, and that’s ok. They listen to the body and he’ll be ready when he’s ready. (Man that’s a whole essay topic right there).

With all that going on this week and my dad blessedly by my side to ease the stressors, I found myself so deeply tired. Just weary. And it’s so easy to get caught up in the overwhelm and the anxiety. So easy to feel panicked and helpless and out of control. Every surprise, set back, cough, rash, mouth sore… it all reminds me how very precarious this is. Every time it feels like I know what’s going on or I feel settled… things get shaken up. I’m reminded I was never in control. I don’t get answers. And I have to choose to just keep going.

To live life is to continually let go. To grow and change and adapt and heal is to continually let go. To follow Jesus is to continually let go. To have children and love them is to continually let go. To know yourself and find your way and be open to the goodness is to continually let go. How many times am I reminded of it? It’s heart achingly difficult work, but there’s no shortcut. No substitute. It’s always worth it.

So my little baby is losing his hair again. His cheeks are falsely chubby. His demeanour is altered by medications. He’s tired and he’s sore and it’s absolutely fine.

It’s alarming how fine and regular it is.

Lots of snuggles. Lots of deep, slow breaths in and long, trailing breaths out. Lots of indoor days and a/c cranked afternoons inside with movies, new stuffies, and bouncy balls or sticky hands or temporary tattoos. It feels like summer but it also doesn’t. It feels like cancer treatments but it also doesn’t. It feels like the world is holding its breath but it also doesn’t. It feels like I’m torn in nine million directions but it also doesn’t.

———————

I’ve noticed it beginning to happen. It was subtle and sneaky at first, but once my consciousness was alerted to it, I couldn’t go back to the before. Moving home is actually starting to feel like something that is going to actually happen. It’s no longer this far-off impossibility tantalizingly sitting on the horizon, never inching closer. September* (asterisk, there is always an asterisk here because of, ya know) is not too far away anymore. Social media is flooded with back to school content (boo, hiss!!!) and Halloween pajamas and costumes have been available for weeks already (barf, seriously!!) and summer products are now on “end of season clearance” even though we’ll have good swimming weather for like, another 8 weeks.

Summer always stretches out in front of me, keeping me trudging through the cold and the rain and dreary, bleary days. It sits there as a perfect, unattainable thing. It’s impossible to accomplish all that summer teases you with. Lake days, beach days, pool days, holidays, new weird mocktail recipes you frantically favourited while scrolling endlessly. Parties, weddings, camping trips, bonfires, themed nights, relax, unwind, accomplish more! Take it easy, have fun, but also schedule every single day from here until it’s time to start buying number 2 pencils and Halloween costumes. Chill out, do less! Have a staycation! Fun in the sun! Pack the van to the gills and curse at everyone filling the parking lots and infesting the lake and argue with sunscreen and toddlers and then pour sweat out every pore while lugging four metric tonnes of crap from your vehicle roasting in the heat out to the burning sand of the lake where every surface, every snack, every inch of skin is going to be simultaneously sandy and sticky for the entirety of your “relaxing” beach day!!! YAY SUMMER!

Even typing that out made a pit open up in my stomach. I’d give practically anything to have a beach day. To put the sprinkler on in the front yard. To have popsicles in the downstairs freezer. To be cussing under my breath in the Westwood lake parking lot.

Thankfully the boys are happy. They love RMH. They love their friends who they get to see every day. There is some pretty cool magic to that that exists only here. They love Bingo Night and the monthly birthday parties and riding scooters and eating freezies and playing with bubbles and water guns and doing music therapy and making creations in the art room. They don’t pine for back home or beg to return. They live in the moment and create the memories so easily. They’re present. They’re open-minded. They’re incredible. They’re making the best wherever they are, however they feel, together.

I’ve had tears prickling the edges of eyes for days now. Conversations with the family about to move home, their kids, 2 and 6, disappointed and sad about leaving here. The mom who has two boys who are 20 now, who looks me in the eyes and smiles knowingly, who encouraged me and spoke words of goodness over me as a mom. Who got to go home yesterday and left a note in my mailbox that made me cry. I can see this chapter wrapping up. And I wanted so badly to be here. I’ve waited to feel the summer heat on my skin reminding me we’re almost done. It was the end of fall when we moved here, we stayed all through winter… it was freshly spring when the brothers joined, and it’s fully fledged summer now as we anticipate the arrival of fall and our arrival at home. How can that be?

It feels like maybe August is cashing the cheques that May was writing. I’m here now, where I have been waiting to be. Standing on the precipice between Vancouver treatment and Nanaimo maintenance. Fully settled in and confident and comfortable in this life we’ve built in a city that isn’t our own. Tackling the last big thing before we begin the next big thing. It feels surreal and also more bittersweet than I expected. I expected to be jubilant and counting down the days until we cram our van full to the brim for the last time and check outta here. But I’m not.

Of course it’s way more complex— because we’ve built a life here. We’re not just on pause or on hold listening to horrible grainy Muzak. We’re living a fully fledged life here, the good, the horrible, and the everything else. What a big ol’ mess it all is. And isn’t that the beauty of it? Aren’t we so blessed to have friends here to miss? Aren’t we so blessed to have nurses who we’ll think fondly of? Aren’t we so blessed to feel such pride at our bravery and courage? Aren’t we so blessed to know we made it through all this together? Aren’t we so blessed to be carried through this by so many who love us? Aren’t we so blessed to have SO many people to thank? Aren’t we so blessed to keep writing this story? Aren’t we so blessed to celebrate the heck out of Mercer and Conrad’s birthday this month? Heck yes— we’re blessed!

Heck yes. We are blessed.