First Day of School

Yet another “how do I write this one?” Because how do you? How do you put this shit into words?

You generally start with a thesis, of sorts. That seems to be where these things start. I begin a blog with a message in mind. A point. A frame in which to put words to the page in such a way that, in the end, makes a statement. Or describes a sentiment, or a feeling, or a moment in time.

The problem is, I have no idea what frame to put this in. I don’t know how to package what I have been thinking, or feeling, or living, these past few days. And, also relevant, there is the fact that these frames I use play into the momentum of the world around me. Timing is everything. And because this blog is public, real-time writing, cultural salience influences how I present our life within it, as well as how I feel about life as I’m living it.

I am an energy person, admittedly woo-woo and often “out there” for some. I notice it the most in certain contexts, but perhaps none so much as when I am asked about our cancer journey. And I’ve learned how important it is, both for my ability to hold on to particularly fragile perspectives, and for my sensitivity to the experiences and beliefs of others, to be discerning about when and how I express my attitude toward things.

People like to be inspired. And I can do that. I can inspire people. But I can also turn them off, piss them off, make them shake their heads, and annoy them beyond belief, if I’m not careful.

An eternal optimist. An idealist. An escapist. A dreamer. A pie-in-the-sky, starry-eyed, airy, flighty, romantic, naïve, self-deceiving Pollyanna.

I assume the list goes on. But it’s taken me a long time to understand that how I am perceived – the expectations and opinions of others – is not as valuable, in the end, as holding on to my own beliefs about things.

This has been the work of my life these past five and a half years. I have been learning how to balance on my own tiny tightrope of belief without looking down, without looking outward, knowing I’m too far up to find reassurance in the eyes of those looking from below, knowing I’m too far away to be saved from the winds that blow hard and relentless at this altitude, knowing I’d fall too hard and too fast to be caught if I falter.

It's the challenge of a lifetime.

What the hell are you talking about, Shawna? People that talk in metaphors can shampoo my crotch (I just watched “As Good As it Gets” and it deserved some sort of reference here).

Here are the facts. Today was the first day of school. Lucy and Violet started grades 5 and 9 respectively. This morning, I woke them up at 6:00am so they could fight over the shower, then the mirror, then the kitchen counter to pack their own lunches. They posed for their obligatory “first day” photo in front of mom’s ritualistic torture chalkboard donned in gothic-punk-rock-metal-grunge and Japanese-manga-cute-core clothing respectively (by the way, I have no idea what the actual terminology is for their styles but suffice it to say they looked like they were as intentional as humanly possible to look like they were unrelated). We spent the weekend as a family crafting a scarecrow that Matt will submit on behalf of the Chamber for the Fall Fair next weekend. Last Friday, I attended a concert at my favorite local intimate venue for an artist I just recently told Matt I would travel wherever to see play live and who ended up “popping in” to Kelowna after leaving Paris and carrying on her tour at larger, more unreachable cities. The Monday prior we met with Violet’s oncology team to discuss next steps as we felt her treatment protocol had done its job, ready to review the scans we chose to take instead of carry-on with the next vicious round of chemo and immunotherapy unnecessarily, so that we can ultimately get on with the next glorious chapter of our lives.

And now, this Thursday we will sit down with the surgical team at BCCH to discuss the tumor growing in her lung near her heart.

It’s Childhood Cancer Awareness month. I have wanted to post every day, because I want people to be aware. I want to advocate for the research that has advanced treatments that have prolonged my daughter’s life. But I just haven’t known how to approach it. What do I post? I have so much material, so many photos of Violet in the throes of suffering, face bloated from water retention from drugs that stripped her bone marrow of life (literally twice, back to back), hooked up to bags of saline, chemo meds, chimeric meds, nausea meds, opioids, blood transfusions, often all at once – meds that require pages of paperwork to approve before administration as their potential side effects can be more lethal – often more lethal – than cancer itself. FIVE AND A HALF YEARS of material, both in and out of treatment. And, in many cases, the horror stories I could write about to contribute to the advocacy campaign involve the suffering we’ve endured outside of hospital walls, in marriage wars, financial struggles, PTSD episodes, relationship wreckages, and general conditions of isolation and terror.

I’ve been compelled to write about that, to contribute it to the narrative that makes visible a world that no one should really have to be aware of. Because awareness is the first step to action, without actual acts of support, nothing gets done and nothing moves forward.

But my attitude – my energy – has always been a little unorthodox. I just can’t help but lean into the light.

I have lived on and off in a pediatric cancer wards for solid months and months of my life while the unfathomable has been happening all around me. And I’ve had to contend not just with the threat of it knocking at my door, but the actual lived reality of my child struggling for life in my arms over and over again, navigating our way out of the dark and back in to the sun, only to be pulled right back into the depths again.

On Monday, despite the intention to approach the conversation lightly, I was still offered the solace of reconnecting with hospice again.

Hospice. Childhood hospice. Again.

So needless to say, watching my daughters fight this morning over makeup and who got to sit on the bottom stair first to tie their shoes was a strange kind of ecstasy. Some say I’m good at finding silver linings. But I see it different and always have. It’s not “even though this is total shit, there’s some sort of good in it, somewhere”. It’s more like, “this is life. All of it.” My spectrum is just significantly broader, for better or worse, than most.

And when you have had to find the meaning and make peace with this kind of insane uncertainty for this long, silver linings don’t cut it. I can’t live in a place that is defined by its dread and soothed by desperate moments of relief. We can’t live like decaying zombies decked out in pink bows, hoping they’ll distract from “the truth of things”.

Because here’s the truth of things.

Violet has an incredible relentless disease. High risk neuroblastoma is characteristically one of the most vicious cancers to treat (with front line protocol literally throwing everything and the kitchen sink at these little bodies in desperation to keep them alive, including 4 rounds of various chemo agents, surgery, 2 back-to-back bone marrow transplants, radiation and 6 months of immunotherapy), and relapsed cancer reported with a  5% chance of long term survival. Violet has had all the odds stacked against her and has had that reminder repeatedly in a visceral way as almost every sweet angel we have befriended through her journey with the same disease has since passed. There isn’t high expectation she will make it. She knows it. I know it. We live with it, every single day.

But the truth doesn’t end there.

There is also the fact that Violet has continually proven she does not fall into any category – literally any – in any “normal” way. She has done things her own way since the day she was born. She is her own person in a way that would make most parents run for the hills and, if it weren’t for this particular scenario, I would be terrified to try to lead. But her obstinance and authenticity and ruthless determination of will has served her in ways that medicine does not account for. Because there are no research papers that study VIOLET – or that even study the effects of attitude and willfulness on the body (that’s actually not true at all – there is incredible emerging science that exemplifies the effects of placebos, meditation, attitude and overall emotional environments on healing, but I’ll keep that out of this for now).

Then there’s this: when Violet was first diagnosed, she came up as ALK-positive. That’s a rare genetic mutation that 10% or so with neuroblastoma exhibit. What that meant for us in the beginning was that we had access to a study drug called Crizotinib that Violet took alongside her protocol with the intention of amplifying the effects. Although we won’t ever know how it influenced her outcomes, as she was (long story) pulled from the study midway, considering the expectations they had for her response, she likely benefitted in miraculous ways from the medicine. When she relapsed, she had a small spot in her hip that stayed relatively stable for almost a year. It was this spot that they took a biopsy sample from, and with an incredible amount of difficulty (because of the location and its size, there wasn’t a lot of confidence that the results were as conclusive as we would have liked). The biopsy, at the time, did not show the same ALK-positive mutation as the original biopsy from her adrenal gland, and so the drug we had intended to use for relapse – an evolved version of Crizotinib called Lorlatinib – no longer became a viable option, as it is only used for that particular molecular structure. Without other options available, we defaulted to the 17-month chemo/immunotherapy regimen for relapse that the doctors had in their toolkit (that and that alone).

So, when her somewhat dormant cells in her hip metastasized throughout her entire body last summer, Violet began her ritual journey to BCCH again where they poisoned her body to a breaking point, eating the cancer and her healthy cells with it, month after relentless month. Until last month, when a vicious allergic reaction to the meds took over her system, made us question whether this treatment was doing more harm than good. Afterall, her body was back on track.

She had/has a Curie score of 0.

For neuroblastoma, that’s exceptional news. They use a cell-specific MIBG scan that only lights up neuroblastoma cells in the body. And nothing lit up on the scan that was detectable.

Remission…almost.

Save for this one little spot. A spot on her lung that light up like a Christmas tree last July, that shrunk down to a few millimetres in treatment. But it’s there. A spot, in the same place, larger than last time. But not lighting up.

And they can’t figure it out.

So, what if the story is this: it is, in fact, disease in her lung. But perhaps it is, in fact, ALK-positive. And the sample we couldn’t get way back when – the sample that may have given us access to the drug that would have, in fact, gotten her out of this mess - now could be an option. What if this is good news?

What does Violet think?

“Do I get put under? If they can operate, that’s great. Do that. I love getting put under.”

She’s been bragging to her friends that her hair might come back. She might get out of having to throw up violently for two weeks each month. She might just only have to get a lung surgery and then take a pill and get on with things.

She might.

We have absolutely no idea, but guess what? We haven’t had a clue since May 31, 2021. And we won’t again, really, for the rest of her life. Because that’s cancer. It shifts the gears of everything for life – or death – or whatever comes in between. It’s just a different reality. And it is now, and forever, our reality.

So, what’s the frame here? If I’m wearing my “Back to School Mom” hat, it’s savour your kids. Don’t take for granted the simple joy of stressing about making their lunch and watching them punch their siblings in the backseat. Appreciate the kind of chaos that comes from normal life (that is not to say it doesn’t count as hard, but it’s a different kind of hard). If I’m wearing my “Childhood Cancer Awareness Advocate” hat, it’s don’t underestimate what your contributions can do. These drugs don’t come out of thin air. They are researched and funded and supported and moved forward through the momentum of others. And they give people like Violet options they never used to have. A pill, so they don’t have to watch their bodies deteriorate from treatments that are meant to save them. So they can go to middle school with hair, and grow to be the same size as their peers, and not have to say things like, “please don’t tell my teachers I have cancer – I don’t want to be treated like the weird kid,” on their first day back.

We meet with the surgeon soon. I was going to wait to write any of this until I had answers – absolution – but I know better. I only have today. And today I have Violet. And Lucy. And they are on the same bus 