Built to Heal

Final round, baby!

Those words hang in the air, in my mind, filled with the helium of a million extreme emotions – clear and invisible and unnoticed until sitting on this couch. Now that we are back in the hospital, greeting the nursing team in the in-patient ward for the last (touch wood) time, I’ve finally allowed myself some acknowledgement of where we are at.

Today is day two of five of this - our final admission. As we’ve done on the four previous rounds of immunotherapy, we arrived at Ronald McDonald House Monday afternoon. We checked in. We visited the clinic to insert Violet’s insuflon (a catheter in her leg that will help her administer a needle of GM-CSF daily for two weeks to support her blood counts). We caught up with nurses and doctors and RMH staff. We reoriented ourselves.

We spent our “off day” on Tuesday exploring Stanley Park. Back in my previous life, spending a morning in the dappled light of big leaf maples and Douglas firs was my version of heaven on earth, and this visit was no exception. In fact, it couldn’t have been more providential. From finding a perfect parking spot, to being greeted on our walk by a lady flying a beautiful panda kite (Violet began the morning talking about her love of pandas, and her desire to find a panda-themed memento that day), to being serenaded by a Chinese Guzheng musician and followed around by a family of chirping chickadees, it felt like I was dreaming up the day moment by moment.

We decided to visit the Aquarium. Lucy, Violet and I bought our tickets and entered into the building with skipping feet and dancing hearts. Even the animals frolicked with our playful energy. The otters chased each other in their wakes and the monkeys lined up against the window to touch their tiny paws against Lucy’s fingers on the glass.

We ended the day snuggled on the couch with my brother and sister-in-law, the way we used to years ago when we lived here. When this was reality.

But reality is so fickle.

And yet, so much in our control, it’s scary.

This has been a very powerful message – one that I, that we, all tend to forget all the time. We get so caught up in the momentum of our experiences that we forget how malleable it all is.

With the blissful verve of the day before, we returned to this world of suffering and loss and isolation and despair – the colors of childhood illness. But we had buoyancy. We had a different momentum going.

“Shawna! You’re back!” Kaleigh, a beloved nurse, caught me in the hall on the way for coffee. “I’ll have to come by to see Violet. How long are you in for this time?”

“Should be out on Monday,” I said lightly. “It’s our last one.”

Pause…and then, a visible shiver.

“Last one? Are you kidding me? That’s so exciting!”

I smiled. Of course it is! I thought. And yet, there wasn’t really anything I’d term as excitement in my mind, or my heart. Calmness, maybe. Or maybe, until that moment, I just hadn’t let myself think about it.

“It is exciting. And very strange. But, yes, it’s pretty incredible.”

It IS pretty incredible. And now that I am sitting on this couch, reflecting and allowing it all to begin to sink it, it is on the verge of momentous.

Outside the window, my view is nostalgic. In the ward there are two long hallways, perpendicular to each other, forming a right angle that stretches out from the main nurse’s station. Rooms line each side, giving patient’s a unique view from each arm. This time we are back in the wing we started in, after getting the full spectrum of rooms and views throughout our 14 months of treatment. When you look down you can see the top of the fifth floor below – a green roof carpeted with plants that is almost always crowded with seagulls and pigeons and crows.

13 months ago we were in the ICU and I watched a mother dove tend her tiny squabs covered in downy, sparse feathers. Eventually they flew off into the world, and possibly, they are the full-grown birds I am now watching peck at the plants below.

Circle of life. Ingonyama nengw' enamabala. Hakuna Matata.

When we arrived on Wednesday night for our admission, we arrived at the entrance of the Teck Acute Care Centre and had to maneuver our suitcases through a crowd. There was maybe twenty of them, hugging and holding one another, soaked in tears. Someone had passed, and it was fresh. It was palpable, and it was a veil we had to push through before even getting in the doors.

I had texted another mother on the ward to tell her we had returned, and she reminded me that they were on isolation after testing positive for COVID. No visitors. Another memorandum of the context we were in. And she told me that another one of Violet’s little friends on the ward was due to return on Monday for a fresh round of chemo and radiation – her second relapse since completing Violet’s same protocol a year ago. A third fellow neuroblastoma patient we know had just gone home from finishing the first of several additional treatments he will have to undergo to fight his own relapse that the doctors have given a scary prognosis.

My heart, beat after beat, slowed as we moved from the light of the day before back to the darkness of this disease, thumping a painful reminder in my chest that we are, by no means, safe from uncertainty.

But there is a voice in my head – one that is difficult to share with others – that says, “Shawna, you know how this will turn out.” Because I do. There is something that has been there from the beginning – something so confident in the outcome that I haven’t wanted to say it out loud and risk an outside influence of doubt. Maybe it’s denial – the complete refusal to accept an unimaginable outcome. I was not losing my daughter. That just wasn’t ever an option.

And yet, as a mother and in something so utterly consequential and out of your control, you must accept the reality that you CANNOT dwell on outcomes. Odds. Prognoses. All of that, for me, went completely out the window. Because what’s the point?

The point for me has always been to seize the day. To find a way to make peace with what is. To accept that the only option in this – in life – is to allow whatever will be to be and milk the moment for anything beautiful that you can. Anything that soothes you. Anything that reminds you that it is all, in the end, ok.

Even when it’s not. Even when you are facing death and suffering and indescribable loss. There is always space, somewhere, around it.

And you can expand that space like a balloon, and make even the most dire of circumstances manageable. Palatable. Profound. Even pleasurable.

After over a year of living in a hospital, watching Violet undergo a gruesome kind of torture for days, weeks, months on end, I’ve learned this in a way I could never have before. We create our own reality. I have had absolutely no control over the conditions of this disease, or Violet’s results on the scans, or the time we’ve had to spend in here, or the ultimate “end” of all of this. But despite all of the horrifying details and expectations surrounding this, we’ve… had fun in here. We’ve enjoyed things and benefitted from it in ways that will only continue to reveal itself as we move away from this place. We’ve enjoyed our time, even under the weight of uncertain doom. And even if we return, we will find a way to milk it. Because one day – tomorrow or two years from now or ten decades, this story will end and all we will have left are the moments we managed to squeeze out the good stuff.

In some ways, this is kind of anti-climactic. We aren’t done yet, for one. We have six to eight weeks of immunotherapy to complete at home, and a return in between for a check up on progress. She’s still in treatment, although hopefully without any more admissions. And when she’s done, and her scans are complete and clear (hug wood), we will still keep on coming back for check-ups and tests. More “scan-xiety”. More uncertainty.

But I’ve never really let this define us. I’ve never wanted this to become our new life. I’ve wanted to maintain as much existence in that space between things that is light and buoyant and undefined by this or that. That malleable, movable space. That place where we can be in the moment and define the pleasure that instant despite the infinite details around us that threaten to sweep us up in momentum.

There are billboards that surround this hospital and are sprinkled all around the city. The messages include things like “What if I didn’t have to live in a hospital?” and “What is laughter was my only medicine?” with solemn faces of children in the middle of chemotherapy. They are meant to inspire people to pay attention and donate. Fear. Guilt. Empathy of the agony these kids undergo. And that’s effective. That is, in fact, what people pay attention to. That’s what gets the ratings and the money. And I appreciate that.

But there are no shortage of messages out there to remind us of the tragedies that happen under this roof. And even if it doesn’t sell, it’s important to balance it out with another angle.

As I returned to the hospital from a morning walk, I stopped under a billboard in the back of the building over the courtyard. It says, “We are built to heal.” And it has a picture of a joyful child, giggling in her hospital bed. For some, like the mourning family we walked through at the entrance yesterday, this may be a mocking message. And it could have been for me. But from day one, this billboard has been a beacon of hope and light. A true message to invest in. And now, it is a message of validation.

We have everything inside of us we need if we let go of outcomes. We are all on a ticking clock. Even our time in a hospital, ironically, was too short. We are saying goodbye to family. To our home over the last year. To a place that has been the heart of so depth of meaning in our life, for better or worse.

There are a million messages I could focus on, and spread, from this, and all have value. In the face of childhood cancer, we need understanding and advocacy. We need empathy. Violet and her little friends need faith and hope and love and support. But what Violet and I have also needed throughout this, and others do, too, is a reminder that this isn’t a sentence to misery. Even in pain and suffering and loss, there is a finish line. We are built to heal.

And soon, we will be home for good (kiss wood) to do it.