There is a familiar ache in my forearm; I noticed it while nursing my iced coffee one morning. It’s an ache in strange muscles, but I know exactly what it is. Pulling Mercer in the wagon to and from appointments. That’s how I know he’s in a tough spot — he’s not walking like his normal peppy self, keeping up with his brothers and bringing a tagalong stuffed toy friend. He’s choosing the elevator and sitting in the wagon and nodding his answers instead of speaking. And the appointments are more frequent. 8 of the last 14 days we were in clinic.
Today is day 37 of delayed intensification. (By the time I’m writing this is actually day 45) Somehow that number seems higher than it should be, but the time has really been zooming by. DI is broken into two halves, with a check-in point on day 28 to see if his blood is ready to proceed onto the second half. There is often a week or more delay at that juncture, and after the fiasco with Vance’s mystery illness and Mercer’s neutrophils fully camped out at point zero, I expected a lull. Heck, I even hoped for one because it would mean we didn’t have to worry about Vance’s maybe-leftover mystery germs and also the scheduling of the twins’ birthday party which of course I had to plan before we knew any of this.
And — of course — we got the “good” news Mercer’s blood was ready to start the second half. I was so startled. If I’ve learned anything, it’s that you can’t tell from looking at a kid what their blood is up to inside them! And the time you think you’ve got it figured is the time you get humbled. Is that some type of medical Murphy’s Law? It muddied up my plans a little, but I got a little thrill when I realized it meant we were going to be able to move home earlier in September than I had mentally calculated initially. And THAT kind of happy surprise doesn’t happen often, so I chose to focus on that.
This second chunk of DI is heavier. Meds that are harder on the body, with harsher side effects, and more frequency in the doses. His hair is fully gone, shaved off when it got too tickly and itchy and stuck in his clothes. He’s lost some of the steroid weight and is continuing to shrink. Now most foods don’t appeal to him or he takes six tries to find something that seems good. He’s on a different cocktail of things and had 4 clinic days a week for two weeks with two blood transfusions and a platelet transfusion tossed in at the same time as his birthday party.
His birthday. Their birthday. Conrad and Mercer turned 5 while Mercer was in probably the roughest shape he’s been in since the early days of leukemia. But that didn’t stop any of us from celebrating the heck out of them. I threw myself into Amazon wishlists and had no less than 20 amazon packages showing up in a steady stream leading up to the big day. I had about 30% too much stuff and like always, I had an obscene amount of food.
One of the sweetest surprises was our room door. A while ago, Mercer told me proudly that the RMH staff decorate the door when it’s a kid’s birthday. I told him I was fairly certain that wasn’t true but there was no telling him. So of course I quietly got decorations and planned to decorate at 11pm in a sweaty fever on a busy week but then one of the little “elves” here came and told me that in fact they do offer that service but only if it doesn’t interrupt the parent’s plan. I was THRILLED to offload a job let me say that haha. And the boys were utterly delighted to see their decorated door, specially just for them, by the elves of the house.
All the staff and so many of the families know us and knew it was their birthday and it felt so lovely to see everyone shower them with love. It felt like a normal birthday, a regular kid thing…such a victory amongst the hard, heavy stuff. It felt like the thing we’d been waiting for. Their birthday was right around the time I thought we might be moved home. In those winter days, I dreamed of mid-August when I’d potentially be throwing their birthday party at home, and it kept me going. So naturally, part of me was disappointed we weren’t able to fulfill that dream, but the boys actually wanted the party to be here. With friends. At RMH, their second home. How blessed are we to have two places to feel at home?
I got a big “5” balloon, hung bunting like a used car lot, found every tie dye item I could get my hands on for the theme — and got two tie dye kits and about 15 shirts for the friends to make something special instead of just a regular loot bag. I’ve missed hosting, missed regular things like picking chips and dip for a group of 20. Missed being the one in charge of something and fixing the outcomes and having some element of control. It was a blast. My heart was bursting. It felt both normal and special. Normal like just regular kids having a typical birthday — cake, chips, kids running around. And special like wow– this is magic. This is memorable. This is my kids’ childhood and their memories are being built right in front of me and they’re happy.
In classic ridiculous fashion, Mercer had a transfusion the day before, a transfusion the day after, and a clinic appointment literally in the middle of his own birthday party. He’s had something I’ve just discovered might be “chemo cough” where he’s just hacking and struggling but no flu or cold symptoms. No fever, which of course is the big scary thing to look out for when he’s got no immune system. It’s hard not to feel triggered by the similarities to how it was at the beginning: brand new, overwhelming, intimidating. Your mind is trapped on high alert and it’s spending a lot of time talking yourself down. A constant monologue of worry, fear, caution, reassurance, self-soothing…. repeat. We know how to do this. This has happened before. We can do hard things. Mercer is getting the best care. We can cuddle and do nothing else if that’s what’s needed. We got this.
I’ve started to feel this pang of pre-nostalgia, let’s call it. I’m trying to freeze the moments and memorize them. I’m trying to document the good and the magic and the special. We’re in this amazing bubble — it’s godawful because of course it is– but it’s still an amazing bubble. And we’re closing in on the final moments here, in this strange in-between world we occupy. I think Vance said it best when he said “mom, I miss our friends back home, and when we move back home…I’ll miss my friends from here”. Even at 6.5 he’s been able to realize and articulate it. We left a life behind that we’re not really returning to. And we’ve built a life here we’re going to leave behind. And we’re going to build something new together when we go home. And that’s gonna be so lovely and amazing. It’s going to be powerful, rich, meaningful… it’s going to be symbolic and victorious.
Our “after” is full of promise and goodness. But we’re still going to grieve our “before” and our “during”. So I’m trying to put words to it, to recognize and to prepare and to ask others who’ve moved home before us what it was like for them. To remind myself moving home isn’t actually the end. There are still months of visits and lumbar punctures and chemo drips and clinic days and set backs and medication adjustments and low blood counts and a few intimidating cold and flu seasons ahead of us before M is actually done treatment.
When delayed intensification is over here in less than two weeks, Mercer will begin Interim Maintenance 2. We’re able to move home for this treatment block and return for just same-day or one-night clinic days. Then when that is over, sometime in November, he’ll enter Maintenance. So IM2 is hovering on the horizon as the thing we’re waiting for– better blood counts and the ability to call Nanaimo home base!
For now, I’ll build up some more strength in my arm muscles to pull that wagon back and forth. I’ll order more Lego sets to bring a smile and occupy some hands in the long transfusion appointments. I’ll keep tallying all the pokes and chemo drugs and transfusions in his little book. I’ll stand in the kitchen late and night and do my best to share all my tips and tricks with the new mom who’s in the real and raw newness of this life. I’ll pray for our friends as they get biopsies and scans and I’ll celebrate when news is good. I’ll dream of coffee in my robe in my living room this fall and walks in our favourite parks. I’ll remember that the beach is calling me and soon I’ll be able to answer. And I’ll hold both the excitement and the nervous trepidation.
Thank you again to everyone who has kept us wrapped in prayer and smothered in goodness and love. Thank you for all the generosity and for the continual humbling support. Whenever I’m beginning to feel nervous about the way things are or our financial situation — something always pops up at just the right time. And I know it’s from the goodness and faithfulness of God and from the generous hearts of those who love us. And as Mercer got his 12th blood transfusion — I want to say a huge thank you to those who donate blood. It’s something I’ve never considered doing until recently because frankly it doesn’t seem all that fun but it’s saving my boy’s life. It’s boosting him and keeping him going. He’s kicking cancer’s butt thanks to incredible science and blood donors!
We’ve had more cuddly bed days, more Lego on a tray days, more “I’m hungry but there is nothing I like to eat” days, more sitting in front of the A/C days, and I finally got around to amalgamating my tallies for cancer treatment. One day in the very beginning, a cute little pouch appeared in our room in the hospital. Beads of Courage, it’s called. A program to help kids and their families tally their medical journey. They break down things into categories, and you get a certain coloured bead for each time you have one of the things from a certain category. Hair loss, surgery, procedures like lumbar punctures, therapies like physio, arm pokes or port accesses, clinic visits, chemo infusions, etc etc. It’s a long list. And even in the early, intense days, I decided I wanted to tally.
And even when my little card that it came with got filled up, I started to keep track on my phone. And I never collected the beads, but I kept my tally. And in the last couple weeks he sure has had a lot of things to add!! As we look forward to moving home, it feels like the perfect time to share some stats about Mercer’s journey so far.
9 months
11 sedations
11 transfusions
20 sleeps in hospital
33 chemo infusions
46 pokes/port accesses
54 clinic visits
272 days since we left home
Man, what a journey. And it’s not done! Thank you for all the constant care and support and love. And if you’re the praying type — please pray Mercer’s neutrophils increase (so he has the ability to fight off germs if needed and so he’ll be ready to start IM2 on time) and that his appetite would increase! He had 5 transfusions in the last two weeks, his poor body was hit hard. But I think he’s finally on the upswing! Thanks for the good vibes and for celebrating every little win with us, as always!
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Mighty Mercer 
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