It is 10pm and my bones are weary, crying out in protest as I sit on the world’s squeakiest chair in my boys’ room. I have 3 mattresses, in 3 bedframes, in 2 bedrooms, but alllllll three brothers sleep bundled in blankets on the floor, together in one room. There’s only the tiniest amount of space for me to sit and read to them, chapters and chapters of stories about monsters, little brothers, dinosaur adventurers. I read until I can’t make sense of the blurry words in front of my tired eyes, and the three boys flop around on the blankets, wiggling and farting and chatting and plotting the next day’s adventures.
I went to great pain and expense to set up two bedrooms when we moved back home. It was my first big project and distraction from cancer; I threw myself into it in a big way, carefully curating a cozy zone and fun additions to a bunk bed to make it feel special. Finally Vance would have his own space fit for a 7 year old. But after only about a month of it, they all wanted to sleep in the same room. They’d fight and complain and push for space, but after a trial separation they’d go right back to being together. Choosing to be as close as possible and drifting off one by one as late as possible. The last one awake is the oldest, who without fail will whisper out “love you mama” long after the room’s been quiet and the other two are asleep.
It’s deeply exhausting and incredibly rewarding. Sometimes I’m tempted to think I need to wean them off having me in their room, but then I remember what we’ve been through. How much turmoil there has been. And how they’re still so little. Five and seven are still very much children. One day they won’t want me to sit with them and read about Peter and Fudge and straighten their blankets a dozen times. There isn’t anything that matters more than this right now. Being together. Feeling connected. Loved. Safe. Home.
I have wanted to sit down and write a big blog entry about how maintenance is going. But I’m in the season where I’m falling asleep every time I sit still long enough. I spilled my morning coffee all down my robe last week because I nodded off holding my cup precariously. I fell asleep in the bath. On the couch. Face down on the dinner table.
We’re finally on the up and up— but it’s been a challenging season for Mercer. He started maintenance end of November. We were so excited to start into this. To feel like we’re on the last chunk, the easier section, the final stretch. But it hasn’t been straight forward. Before his first month check back before Christmas, we had already visited the ER. Serious stomach pain and feeling off. We had the check in early and his blood counts were all good. The fatigue and pain and general sense of not-quite-right were just chalked up to adjustment or mild illness. So we carry on through Christmas; we don’t do a lot or see that many people or go many places. Mercer falls asleep in crowded rooms and sat in the wagon as we did a Christmas light walk at the gardens. There were heat packs and naps and all our eagle eyes trained on him. More fatigue, more aches, and more bruises meant he went in for bloodwork before the second month’s check-in for January and he was tanked.
Low hemoglobin explaining the low energy, and critically low platelets explaining the stubborn bruises littering his limbs. The bags under his eyes were darkening by the minute. The important part of his white blood cells, the neutrophils, were so low they couldn’t be detected. He had no immune system, no resilience.
He had 5 appointments and 5 transfusions over 2 weeks. Thankfully we could stay in Nanaimo, joking with the staff about how frequently we were seeing each other. It felt like the end of DI, when he couldn’t go three days without platelets transfused. It felt like it did when he first got sick even before he got diagnosed. One day we were at the Nanaimo paediatric clinic for ten hours. The staff are incredible and it already feels like family there. Mercer was the little prince of the peds ward and we had as much of a lovely time as possible doing Lego and coloring pages together while he was getting transfused and stuck in bed, the colour literally returning to his cheeks as the blood dripped in.
Everything else went on hold, just as it has to. All the other appointments I had lined up had to be paused and rescheduled. Phone calls and grandmas at our beck and call. Donut deliveries from grandpa. Prayers and good wishes and check ins and so, so much love and care as Mercer and his brothers pivoted with aplomb as they always do and I was forced to face the very real PTSD symptoms that were popping up at every turn.
Everything felt exactly like it did in the beginning. The transfusions, the dark under eye circles, the negative test results… no one could identify why Mercer tanked. We didn’t get any clarity from the half a dozen tests they ran on him. In the interminable wait my thoughts and worries sank lower than I expected and maybe reached the dimmest places they’ve reached in this entire journey. The flashes of terror as the word “relapse” enters your consciousness. I’d never even questioned before — of course Mercer would finish treatment and stay cancer free — of course he would. I’d never even considered that he could have cancer come back at all let alone before he’s even finished treatment. It made my blood run cold. And of course, my children still need dozens of meals made for them, the Lego still needs to be brought and assembled in the clinic. They can’t know I’m chewing my nails and trying to stop my brain from spiralling and living on the edge of tears all day. And they don’t!
Unfortunately it serves to highlight how lonely this road is. I’m so blessed to have a crew of solid friends and amazing family at home whose love and support has carried me through this. Friends who check in, who show up, who send pizza and send up prayers and know me and my boys, truly know us and love us. And I’ve got a group chat of cancer mums who were and are in the trenches with me and who kept me afloat in our RMH days as we met and connected and loved each other instantaneously. Moms who’ve whispered their darkest fears aloud and who’ve been met with understanding and replies of “me too”. Who cooked with me in the communal kitchens, who laughed in the oncology halls, who wept with me in the hushed moments.
How blessed am I to have all that? To voice my terrifying inner thoughts and be met with compassion and understanding. But it’s still so lonely, to be the cancer caregiver and to navigate the horrifying realities and to keep the mortal fear at bay for my boys. To be the sentinel, always on duty. To be the comfort blanket, the cozy corner, the constant warm hug. There’s no higher calling. I’m so proud and happy to answer that call. But oh, how deeply depleting to answer it day after day, running closer and closer to empty.
I guess that’s burnout. The falling asleep at the table, the constant weariness, the feelings of “how can I keep doing this?”. But I simply cannot burn out so I put off what I can, and I tighten the reins on what I can control, and I make our world smaller, more manageable. I outsource what I can. I let go of what I can. I accept the help and the prayers and I keep my laser focus and let go of anything resembling guilt.
So much of rallying through hardship seems to be asking for help, voicing your reality, accepting your circumstances and all of the aid from those who love you. Praying and fervently choosing faith, and letting go of the illusion of control: on repeat, and as necessary. Keeping your world small and your goals tiny so you can achieve them. Celebrate the tiniest wins. Soak in the micro joys and appreciate the heck out of anything that sparks an iota of gratitude.
I wish this blip felt over. I wish we had an explanation for why Mercer got so depleted. I wish he didn’t need his 26th blood product transfusion. I wish I didn’t have this new lurking fear that he could relapse. I wish I didn’t feel so worn thin. I wish I didn’t miss my cancer mums so much. I wish maintenance didn’t last so long. I wish public spaces and germs didn’t give me the heebie jeebies. I wish my boys didn’t have so much of their childhood shaped by illness.
But also, I hold very tenderly and lovingly the outlook we’ve adopted. The way we love each other fully and loudly. The way we have compassion and understanding for families with disabilities or illness affecting their lives. I sit, sore and grumpy at the end of another long bedtime with many whines and gripes and head bonks on the bed frame, but I can’t be angry or disappointed because these boys want to be together. I know they’re brave and strong and powerful; they feel confident and loved and secure. And we know how precious and terrifyingly wonderful life is. How complex and seemingly contrarian it can be — how we can be grateful for the worst thing that ever happened to us.
These boys keep going forward bravely and boldly because it’s who they are and it’s all they know and they’re surrounded by so many people loving them and holding us in the light. I recently read a short post from an author, Emily P. Freeman, who was saying she’s learned a lot from Quaker practices lately, and one phrase they say has been helping her in times of sorrow, grief, and despair.
“I will hold you in the light”
It means I will face you. I won’t forget you. I will keep you in my heart in the presence of God, who is Light.
This is so remarkably comforting to me, putting eloquent words to the exact experience I’ve had. It feels exactly like we’re being held in the light. When I am too weak, I’m lifted up by others. When Mercer is low, we carry him with the help of others. There have been so many sunny days this winter, so rare for the wet coast and it’s felt like a tiny miracle, just for us. I close my eyes and soak in the rays, feeling like I’m cold blooded and warming my body to thaw it into action. Yes, we are certainly held in the light. My faith has been strengthened in this season, I’ve been bolstered, and I’ve been surrounded by those with faith far greater than mine which lends me its strength.
I’m so glad to say that Mercer is perkier now, chasing his brothers, and not just cuddled on the couch. I’m more calm, relaxed, and optimistic than I was when I kept hearing those blood count numbers on bated breath, double and triple checking with our oncology team that we don’t need to panic quite yet. But it’s not lost on me that we have been fortunate. The same week Merc was getting topped up with platelets, another friend was returning to Vancouver to check their child’s bone marrow because they too were experiencing low-lows for unknown reasons. Another friend was returning to Vancouver because their child needed surgery to replace their port because of infection. The same week the news was filled with increasingly more dreadful headlines that I’ve hidden from my view because I can’t face the tragedies outside my own little circle right now. It is so heavy to be a human in the world right now.
And yet, the sun still shines again. The people who love me best of all are still here. The hard night passes and a new day comes. The children still play dinosaurs and make crafts and lose their first teeth! (Congats to Vance!!). The bills still come due. The laundry still piles up. The dishes still beg to be dealt with. The crushed goldfish still migrate under the van seats.
So I continue to live in the duality of holding my breath and living regularly. I feel both lucky and unlucky. Unafraid and anxious.
When people ask how we are, it’s not an easy answer. Because it’s not an easy time. We’ll navigate illness and blips and fears and the Groundhog Day realities of immunocompromised living. Merc’s first return trip to Vancouver for another lumbar puncture is coming up in a few weeks. It feels like it’s been ages since we’ve been there… I’m somehow nervous to return, for a huge long travel day, for the fasting and waiting for sedation. For a chemo drip and five days of steroids… but it’s part of the journey and every day brings us closer to the end of this! So we’ll continue laughing at bedtime as we stay up together in the same tiny room reading books and soaking in the tender and wild joys of childhood.
And we’ll continue to hold each other in the light.
🌞
💛
It’s never easy to ask for help, especially if you’re a first born daughter like I am haha. And Mercer is actually ok for the moment, but it’s becoming clear to me that this is an ultra marathon run by an already exhausted runner. I know so many of you have directly helped us, and every single gesture, well wish, prayer, gift card, coffee, and generous gift has blessed us so much! Thank you! Thank you for being our village, for caring for us, for supporting me, for helping Mercer. People constantly tell me they don’t know how I do it. And *I* know. It’s because of all of you. Truly.
Some people have asked what could be helpful, and I thought I’d list some things here now I’ve had time to think about what life is like and what could be beneficial, but please don’t feel any pressure, this is only for people who were already looking for ways to be involved 💛
Grocery gift cards, Skip the Dishes gift cards, frozen pizza or frozen meals dropped off. Gas gift cards. Toys or card/board games for appointments. Starbucks or Amazon or Walmart gift cards. Check-in texts and prayers and good vibes are also always gratefully accepted! I’ve been so personally touched by every message I receive personally or through my parents. I am so grateful for the incredible family, friends, and community we have!
Even as I wrote this, reflecting on the people in our life and how wonderfully we’ve been cared for during this— my fears and anxiety became smaller and quieter and they paled in comparison to how God has continually shown up for us, how our people have loved us so well. Thank you for being our people 💛
Mighty Mercer 
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