After an entire month of waiting and delays and rest and low neutrophil counts — Mercer finally got the okay to begin the blina immunotherapy treatment! 28 days of continuous infusions, running through tubes connecting a portable pump to an incredible medicine bag right up to his port in his chest. Most kids do well, but they monitor as inpatient for the first three days to ensure there are no hiccups. They’re looking for neurological side effects like tremors or loss of fine motor skills and fevers. But Mercer passed the three day observation period with flying colors. Not a single issue! It felt like such a dream to go through a few days of back to back wins after having a previous month of back to back issues.
The hardest part was the boredom — Mercer is full of energy and one small hospital room doesn’t hold enough interest to keep anyone going for multiple days let alone an ambitious four year old. It also meant three days away from our friends at RMH. We now have a list as long as my arm of friends here. Mercer has embraced his adventurous extrovert side and we come downstairs in the morning with toys and look around for friends to share with. It was hard to go back inpatient after almost three months of being at RMH.
So we wandered the halls and chatted up the nurses. We spotted some lady bugs in a window and it felt like a spot of good luck. How do ladybugs get on the eighth floor? Mercer painted and snacked and drove his RC car and charmed all the nurses. He squashed himself into a dino cozy coupe car and sped up and down the halls. Played soccer. Checked out the play room. The days actually passed pretty quickly!
And now it’s March.. It feels insane to say we’ve been living here three months. Feels impossible to consider that I haven’t returned to Nanaimo. That I haven’t stepped foot in a grocery store or driven a car. That Mercer hasn’t been to the library or our favourite beaches. No play dates. No days without medicine. All of winter. An entire season.
It’s incredible to see his hair grow back. It’s phenomenal to see him run up and down the halls with his backpack jangling. We’re on day six of the backpack. Almost one week down and three to go! (He’ll receive another 28 day treatment block of blina later on in his journey!) We’re finally germ free (both of us) and not having to isolate or wear masks. Sometimes the sun peaks out and we go out in the play area to ride scooters. We’ve played video games and done PlayDoh creations and puzzles at the big tables inviting anyone who wants to join. We’ve raced Lego cars and swapped toys with friends and Mercer has drank his weight in yogurt drinks.
The backpack life is going well! He’s adapted quickly to having a constant bag on and cords connecting him— he’s careful to untangle himself and we haven’t had one single angry beep from the machine since it got hooked up. I cautiously peek into the pouch and check the monitor and cords a few times daily to ensure I’m not just complete oblivious to a weird unknown problem haha. It feels almost suspicious to have such good luck after a month of feeling like everything that could go wrong did!
We’re finally into our third block of treatment. (As a refresher, first was induction, second was consolidation, third is blina bag). As March ends we’ll be finishing the third block and there will be four blocks remaining, each 4-6 weeks long. The end is feeling tangible but also still so far away.
February was a time of reflection and March is shaping up to be a time of action. I had so much time to think and dream and observe and worry and run the hamster wheel in my mind. One theme that kept coming up as I endured the Groundhog Day marathon of February was about “luck”. At home, in Nanaimo, in my regular life… we’re unlucky. Childhood cancer had got to be one of the crummiest hands a family can be dealt. People have rallied around us— we’ve been supported in every single possible way there is to be supported. But there is a tinge of terror or pity or sadness or grief or shock in the eyes, faces, words, of those who hear our and Mercer’s story.
And it’s true. It’s been a hard number of years for us as a family and this is the wretched cherry on top. But here… at the teck acute centre, on the oncology floor, at Ronald McDonald House…. We’re the lucky ones. In the last few weeks I’ve seen the look in a mother’s eyes as she realized her child wasn’t eligible for the blina bag and how she wishes they were because it’s so beneficial. I’ve opened my Facebook to see a mom I recognize from the dinner line up here saying her sweet baby passed away. I’ve sat beside a family whose 4 year old has leukemia and can’t keep down a meal. Who is high risk, not standard risk like Mercer, and who needs a bone marrow transplant. I’ve seen the look in those parents eyes as my kid has hair, runs around freely, doesn’t have a feeding tube, isn’t needing nausea meds, isn’t… isn’t… isn’t….
Over here, we’re the lucky ones.
And just like every other complicated thing in life — both are true. We’re unlucky and lucky. To open yourself up to others is to feel some of their pain. As our kids get to be kids together here in an incredible facility that helps us all SO much, we can’t help but pick up pieces of each other’s burdens. A sorrow shared is a sorrow halved. And a shared joy is doubled.
There’s a little crew of bald and crew cut boys who check in on each other, knowing their appointment days and sleepover hospital days, knowing their favourite sports and games and Lego and sitting together for meals. There are moms and dads and grandparents who spell each other off for breaks and activities and errands and there’s meals and snacks shared and split and things borrowed and lent. Celebrations when the right numbers are hit, a knowing smile and laugh when a child won’t eat the fourth thing we’ve made them, and tender love and care when the delays or disappointments or fevers come.
Lucky unlucky. The hard moments are so hard it feels like you couldn’t possibly keep enduring. And the good moments are so good the joy can’t be contained. Everything is distilled. Everything is clarified. Purified. It’s like living with thin skin — we feel it all. Hardships and trials make us feel so much more deeply— I’ve written it before in my own blog about my own personal journeys— the grief carves deep ruts, and the deeper the ruts, the deeper the joy that can be contained within. How marvellous and how treacherous to walk this path with my child, my family. What a horrible, beautiful honour. Thank you all so very, very much for walking alongside us as we forge ahead 💛
Mighty Mercer 
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