We’re back in our Vancouver home – at RMH, and we’re happy that our room is a little bigger, a little nicer, has a little better AC unit! It is in a different quadrant than before! We’re on the opposite side of the building, sharing a dining room with completely different people than the last 6 months. I’m thrilled to have a bit of a space upgrade especially since it’s unlikely we’ll be checking out from this room for the next 2-3 months, but I’d be lying if I said I didn’t miss the other side of the building. Most of our friends are on that side, and I’d grown accustomed to seeing the same people day in, day out. Eating breakfast and cooking dinner and catching up with the same families. In the six days we were home, RMH had seemed to change. People move in, move out, babies are born, the newly diagnosed settle in, routine check ups end, and some even move home for good. It’s always shifting and settling and rearranging here: a kaleidoscope. It’s beautiful and terrible and somehow still surprising after all these months.
For the first time ever, when it was time to return to Van, we didn’t wait to hear the blood results that his treatment start relies on– we just took the earlier ferry to make it smoother. Literally as we drove to the ferry, my van packed to within an inch of its life, and my parents unceremoniously jammed in there somewhere, I got the phone call and email that Mercer’s neutrophils were too low to start treatment on the 8th like it was scheduled. Oh. Of course.
So it was a quick mental pivot – do we still go to Vancouver? Yes, I’d already decided I didn’t want to unpack that van only to repack it again. We’d already paid for the ferry since I’d lost my pre-paid medical paperwork in a comedy of errors. We’d be more settled and ready for treatment if we’re in Van. Ok sure, let’s still go. But it filters down in phases what that change means…. Suddenly my parents’ plan to come stay for two days and help me settle in and help the boys stay occupied while Mercer has his first long clinic day doesn’t (fully) work. Suddenly my painstakingly created calendar of medication days needs to be shifted by at least three days. But I don’t even want to shift it because we could have another delay. And each stupid little block of the calendar needs to be manually edited.
His neutrophil count isn’t drastically low. And we don’t know which way it’s trending. He doesn’t have any cold or flu symptoms. So it’s just kind of a bump in the road. So the room gets settled into: it’s different but it’s the same. The same cupboards, the same beds, the same layout. So the same items go into their same homes. Clothes in the drawers, the toy cupboard, the art cupboard, the pantry that mixes with my own clothes. Then there is the grocery delivery and the fiddling with the fridge rack, and the catch up with the parents. Two babies were born while we were home. One friend started a newer, tougher treatment block and isn’t able to play as much. Another mom of preemie twins is here and I’m instantly transported back to 2020. There is only one family I recognize that’s been here longer than us now.
The boys are adjusting and are a little cranky (to be honest, so am I). It’s been hot. It’s been muggy. It’s been a bit boring with the boys’ best friend away more than expected. It’s all the normal problems of regular life, really. Plans that change, disappointments that must be ridden out, the growing pains of communal living and its coming and going. The suffocating heat of summer with the constant sweat from helmets and running and living surrounded by cement. It’s popsicles, easy meals, tearing around, bubbles, bouncy balls, bruised knees. Our ritual every night seems to be to eat dinner standing up and arguing and bouncing around and running back outside and in a million times. Then do scooter races and climb the playhouse roof (scaring all the grandparents and moms of small girls who don’t seem used to this level of wildness) and chase each other screeching for a few hours until it’s the timer beeping and all the families take the opportunity to go inside together – no kid wants to leave the party and indeed, every night is like a party here!
Then we go to the little coin-operated helicopter ride in the one corner of the house. It’s actually free–no coins required– the thing any child would dream of! And my boys found a way to get three or even four of them on it at the same time. So each night after we’ve bickered and bargained outside before finally being dragged in, the boys cram into the large kiddie ride with their 6 year old bestie, push the button, and fight some more! Someone always ends in tears because this is the way it is with kids and summer and bedtime. Me and the mom of the boys’ bestie say to each other each night “oh, it’s time to go cry at the helicopter!” and then after a few rides, off we go to our separate corners of the house only to reconvene in just a few short hours for a new day of kid heaven.
So you laugh when the kids roll down the grassy hill and shriek with laughter. You smile when they blow bubbles and play in the water table and share freezies with friends. You share the pain with the parents who found out they’re going to be here months longer than expected, because you too know exactly how that feels. You whisper quietly about the fear of the medications and the future implications. You celebrate when someone might get to go home earlier. You grieve when your friend moves home even though it’s wonderful for them. You’re jealous when someone gets the bigger double-size suite here. You’re joyful when the babies are born. You’re contented when you meet a mom who seems like you. You’re smiling as your kids share and play and talk and giggle and live just as they should. And you take it on the chin when the delays come, when the shadow of disappointment passes across your heart. The clear skies always come back.
Right before I found out Mercer’s treatment was on delay, I reposted a beautiful painting that I saw on instagram of mountains after the sunset, the golden glow still visible on the horizon. It was by Morgan Harper Nichols, an artist/wordsmith I truly admire, with the words handwritten across the landscape– “pace yourself through these mountains”. It felt like the perfect reminder for this season ahead, this block, delayed intensification. Then I got the call that we’ll try bloodwork again in three days and see what happens and it made even more of an impression on my heart.
I have a tendency to make and follow a plan. To want to make correct choices and get perfect results. To plug in the right info, and get the best output. Even as I’ve spent 37 years on this earth learning it rarely works out like that, I still have the urge to just try harder and make it work. If I just make the perfect google document with all the medications put in on all the appropriate days with little emojis and color coding to make it even more visually appealing– then it’s gonna go well! I’m certain I can administrate this into working well!
I made a calendar of treatments: I colour coded the medications, the treatment dates, marked the longer days. I left space for the delay that we’ll likely experience in between the two phases. One of the medications he’s going to be on is lovingly referred to as “the red devil” and it can make your tears and urine pink after having it. Some of the medications are given through injection similar to insulin and can be administered by me or done in clinic. There’s the steroid that gives roid rage symptoms. There’s another drug that can damage kidneys so is given with IV liquids for hours to avoid issues. It’s going to be intense and I can feel my chest tighten as I list that. Two more lumbar punctures. The daily seizure medication and the weekend preventative antibiotic. It’s so much and sometimes the idea of charting and writing and calendarizing (nice word, George, sheesh) makes me feel like I can slow my heart rate and bring a modicum of control to our world.
The visual I think of most is someone holding tight, their hands gripped around a rope. The hand muscles are cramped, frozen in form. They’ve been so vice-like on that rope, that it’s impossible to tell where the rope ends and the hands begin. The feeling of holding on is the feeling of exerting control. The skin is raw from gripping, from the coarse rope fibers tearing at the palm and fingertips. It’s easy to keep holding– the muscles know what to do and they’re seemingly stuck here now. Knuckles swollen and sore, wrist aching, fingers shaking. The fear isn’t about continuing to hold on. In fact, holding on seems easy. It’s all the hand remembers. But what do we need to do? What does life demand we do? What does faith require?
Empty hands, open, palms upward.
Loosen my grip. Let go of the familiar fear. Don’t cling tightly to the unknown. Full hands can’t receive what’s next. They can’t be free.
Letting go over and over, choosing to live in free fall and relinquish the illusion of control and radically accept our circumstances is the only way forward for me. Anything else falls short— I’ll only return to this same crossroads again if I try to keep holding tight anyway. The same stuff that makes up the stars lives in me and my boys. There is eternity in our hearts. Of course I have to let go and let go and let go.
If you’re the praying type — please pray. That Mercer would have his neutrophil (germ-fighting white blood cell) count increase. That he wouldn’t have another delay in start dates. That he would experience few side effects as he takes harsher meds. That our clinic days would be peaceful together as a family. That I would have strength and fortitude to keep going. And that we’d all have peace. 🤍 I know the power that prayer has. And I know it’s carried us here. This next phase is going to be long and maybe gruelling and I’m already weary from caregiving alone for 7+ months. I want to be sure I’m real, honest, vulnerable, hands open.
On that note — thank you! You’ve all kept us going. Kept us comfortable. Prayed over us, sent good vibes and positivity that’s all been received and felt and appreciated. I’m endlessly grateful. Moving forward, we’re gladly accepting good vibes, well wishes, prayers, gift cards, donations, groceries, visits, love sent, care packages— all to it! The final stretch won’t be easy and I don’t want to wait until I’m absolutely falling apart to be honest and ask for help. Our village is widespread, amazing, and filled with love! It’s been such a long haul and we’re not out of the thick of it. Thank you for being with us at every stage. Can’t wait to give more good reports as we put more and more of this behind us!
All our love,
Georgie, Mighty Mercer, Conrad & Vance 💛🎗️
Mighty Mercer 
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