In our homeschooling, it’s the space unit. To be completely honest, I’ve never really liked space all that much. The vastness of the universe freaks me out: the eternal darkness and lack of oxygen and distances measured in light years don’t inspire me but rather make me kinda wanna throw up a little bit. My kids, however, are enamoured. Fascinated by black holes, they have been devouring facts and we’ve been reading books and even I have learned quite a bit! I didn’t know that the further four planets don’t have a rocky surface and couldn’t be landed on. I didn’t realize even though Mercury is closer to the sun, Venus is actually hotter. It feels horrifying to consider the scope of space, very sobering to realize we’re on a minuscule rock hurtling through space, our tiny problems just mere specks in the universe, mattering little.
It takes the earth 365 days to circle the sun (give or take). Enough time for twelve months, all four seasons, for every single human on earth to have their birthday… the end of the calendar year always prompts reflection, but this year seems extra wild to me. We’re in Vancouver for Mercer to begin maintenance— exactly one trip around the sun since we left Nanaimo with suitcases and smiles to stay in a hotel and get a bone marrow biopsy.
When we were last at RMH in October, I realized as I saw the red and gold leaves through the floor-to-ceiling windows, that it was the final season on our Vancouver bingo card. As we carved pumpkins there with friends, it was the final holiday to celebrate there. And as we are here right now, I see the twenty or so Christmas trees exactly as they were when we first moved in, just inconsequential tiny humans completely overwhelmed and flabbergasted by the scale and enormity of what our life looked like in our new home, far from comprehending that we’d be there ten months.
One year ago we sat in room 410 on the eighth floor, the one with the best view in the clinic, a room that had housed many children before us, a room I can close my eyes and revisit. A room that, even with our zillions of appointments, we’d only be in once more in the next year, actually. I can see the doctor and nurse clinician’s faces as they came back only half an hour after the results were sent off. We were looking at the ferry times to go home, to await a Zoom meeting in about a week with results. But I looked up from my phone to see their ashen faces, visible apologies written all over them, and the words tumbled out into room 410 and changed our lives forever.
It’s not lost on me that we’re back, a full year since that day, to enter maintenance. It’s been hard to prepare for Christmas because this time because last year, I set up my Christmas tree, I left for a two day trip, and I just didn’t come home. Someone else took down my decor when it became apparent we wouldn’t be in that home together in the glowing twinkle lights. The Christmas gifts from Amazon got delivered and picked up by someone else and wrapped and dropped off to my two other children not with me.
It’s hard to reconcile that last November’s end was the worst bombshell news of our lives, and this end of November we are moving into the easier (but longer) portion of treatment.
Maintenance.
The continuance or preservation of a desired state. Mercer has reached the place the doctors wanted him to reach. He’s endured the treatment blocks required to get us here— and he can begin the next thing, designed to keep him right where they want him.
For Mercer, maintenance blocks are 3 months long. He’ll have 5 blocks. They are all the same. Day one is a lumbar puncture (LP) in Vancouver. He’ll begin 5 days of steroids (not my favourite!!! Hanger city). He’ll take another chemo medication once a week for a while. He has daily 6MP which is the short form name for Mercaptopurine, a chemo pill. And he has his regular daily anti-seizure medication and his weekend preventative antibiotic. (Yes, it’s a looooot).
Then day 30 is a port flush and bloodwork done in Nanaimo. His port will stay in his chest until the very end of treatment, but when he’s not getting routine chemo administered through it, it requires a monthly flush to keep it operating correctly. Bloodwork taken at the same time will indicate if his 6MP dosage is perfect or needs tweaking.
Day 60 is the same Nanaimo flush and bloodwork. Then at the end of the 3 months, the block ends and we restart with day 1 and an LP in Vancouver again!
So as we’re here in Vancouver for a few days together, we’ll visit our friends in the heavy knowledge that we won’t be back until February and most of our close friends will have moved home by then. We might not stay at RMH again. This is likely our last hurrah. If we return, it’ll be new staff, new people, our mark on the place a little less obvious.
Mercer did SO well in interim maintenance 2. With basically no side effects, it was easy to forget he was still in active treatment. But the exhaustion that comes from five Vancouver trips in two months at the same time as adjusting to life at home and our new reality has worn us (mostly me) thin. I’m so grateful that we get a three month break before we have to take the ferry and show up on the eighth floor again.
As I’ve met with people and had conversations and fielded questions and felt myself slipping into somewhat of a regular-ish kind of life, I’ve realized how truly unusual our live is. Even what people understand of cancer is very often about adults and about “stages” and tumours and not blood cancer. It’s one of those things you don’t know about until you need to know about and thank God if you never do!
Mercer has technically been in remission since he completed his first month-long block of treatment back at the end of December 2024. Standard-risk leukemia treatment in kids has a fast and furious initial attack to eradicate all the cancer cells. Mercer’s first round was successful to get his cancer cells to undetectable levels. That’s plan A. That’s “remission”.
But the remainder of the 2+ year plan is slow and steady to truly quash the cells and smother them so they don’t return. They learned that taking a longer approach and adding in new therapies like Blinatumomab aka the Blina backpack meant more kids stayed in remission. Many people think maybe Mercer is “on the other side” and while it’s true that the harder portion of his treatment is over, he is still going to be taking daily oral chemo until February 2027.
He is going to be immunocompromised until well after that date. Even though Mercer received all his vaccines, his immune system is so effectively wiped out from the chemo that it’s as if he never had those jabs. He could catch chicken pox or worse yet, measles, a terrifying possibility in the world we live in. And he isn’t able to begin getting revaccinated until six months after treatment ends. Those are sobering timelines for us as we celebrate and look forward to being in maintenance and our world broadening.
Mercer will also be at risk of regular germs turning into an infection which requires inpatient treatment. If at any point Mercer spikes a fever, we have to chat with our team at BCCH and they call ahead to Nanaimo Emerg (or whichever city we are in) and say “our buddy Mercer is headed your way” and they’ll be ready for him with broad spectrum antibiotics to treat him until blood culture results come back and hopefully inform them of what he’s got to treat more specifically. That’s what happened to Mercer at Labour Day weekend. It’s basically a minimum 3 day stay. Another stark reminder of the challenges faced if you’re immunocompromised.
It’s a little disappointing or frustrating to move home in cold and flu season. If it was summer maybe I wouldn’t have anxiety about every decision of where to go. I wouldn’t flinch every time I hear someone sneeze or cough loudly. It’s alarming to consider that a fever means days of inpatient care, of worry and of separation from my other two kids. It means every trip out of our town holds a new risk, however small, and it alters the way your brain works. Overall I’m so grateful and hopeful but there are moments I grieve the life I had before where I didn’t have these worries. February 2027 still seems an awfully long way away.
Mercer has had 6MP before but not for too long. Mercer in general has minimal side effects to the medications he’s received and we count ourselves as blessed. But a new thing always brings trepidation, especially as he’s mostly had liquid medications but 6MP comes in tablets which are a tougher sell when you’re 5 years old. I rolled out of the hospital today with 6 pill bottles, and a large bag of assorted medical supplies like chemo-safe PPE and helpful ideas to get kids to take pills (I’m hopeful Fruit by the Foot is gonna help!!) These meds can cause nausea and fatigue. 6MP, the daily med, needs to be taken very consistently to give best results and that’s daunting as a caregiver to a small kid! 5 year boys are basically the opposite of “very consistent”. I’ve got timers in my phone multiple times a day. I’ve got a specialized chemo cabinet with drawers of supplies organized well and kept safe and clean. I’ve got pill crushers and plastic oral syringes and gummy bears to try to make those pills palatable. When my timer chimes, Conrad always pipes up “Mercer’s medicine time!!!!!” My mom described it as if we had moved away to another country or culture and lived there and returned. We are not the same as we were. And our life there was so radically not like life back at home.
I don’t want to sound like it’s doom and gloom. I don’t want to be heavy handed in my description. Because nine times out of ten, when we’re talking or visiting or going places or seeing people or even just sitting at home together— life is GOOD. We are content and joyful and excited. We are grateful and enthusiastic and happy. Truly!!
But we’re not “in the clear” or done this journey. Some of our cancer charity funding stopped when we returned home. We don’t have access to the camaraderie and constant support and meals of RMH. It reminds me of when a baby is born. When you’re pregnant and when baby is a newborn, there is help and love and visits at every turn. But when you’re dog tired, 8 months in, and awake at 4 am… there are no more care packages or cute gifts or as many offers of baby cuddling and domestic help. We’re bedraggled and a bit worse for wear even though we’re thrilled to be celebrating being one year down!
I want to be sure that I do my best to continue to be honest about the vulnerabilities. To share our journey in all its mixed up glory because wow— we have had miracles and goodness and community. And oh man, we’ve suffered and we’ve grieved. We’ve lived in the mixed up middle and there are many who’ve gone before us who understand in their bones. And there will be those that come after us who will join us in that painful knowing. I want to remember – because I know so much of this will be swept away with the tide and the details will be lost and forgotten.
Our stories are one of the most powerful parts of our selves. And the way we tell our stories to ourselves and others and the perspective we keep determines the genre of life we have. I firmly believe Mercer is not living a tragedy. Our family and this journey are not a depressing tale. We’re weaving a beautiful, painful, ridiculous, magical, blessed existence. We’re wringing out every last ounce of joy and goodness from this one gorgeous, bonkers life
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Mighty Mercer 
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