In Like a Lion

Photo courtesy of Skyler Ewing

It’s spring break, week two. One down, one to go. And, today, the robins are singing. Maybe they have a calendar for reference. When we left last Saturday for Vancouver, winter was very much still lingering. In fact, it felt like it was just showing up. Snow fell on an otherwise frost-free lawn for what felt like the first time this season. And right before we headed over the Coquihalla for round 10 of treatment.

As if the anxiety wasn’t high enough on this one. Round 10 felt ominous. Significant. Like, maybe, we were crossing some threshold. And this time, because the kids were on a school break, we brought Lucy along to hang out with her Aunt and Uncle while Violet and I stayed in the hospital. It’s one thing to battle that highway in a snowstorm alone. It’s another to carry with you your most precious cargo, on the way to oblivion.

We made it, though. There is value in everything in life, even navigating horrendous Alberta roads for so many winter seasons in my youth. I do have confidence behind the wheel when slippery slush pulls at the tires, and there was definitely slush, and slip.

And although the snow didn’t stick in the mainland, it was chilly. Lucy and I sure felt it Saturday night as we wandered the streets of downtown, making a date night of it while Violet enjoyed a “glamour night” at the Fairmont Hotel on Georgia (an event hosted by the “She Defines Strength Foundation”, where warrior women ages 13-35 that have battled, or are battling, cancer have the opportunity to get glammed out for the evening and take home their jewelry and attire). We shivered while we waited for our table at Tap and Barrell in Coal Harbour, watching the sea planes land and reminiscing about all the memories we’ve made during this journey. The wait was worth it – Lucy downed two orders of wings, a plate of gyoza and half my ahi tuna bowl. We finished it off with Bella Gellateria and a sketchy walk along Pender before greeting Violet – transformed into a 23-year-old diva – in the lobby.

It was a great start to the week. Treatment itself went relatively smoothly, relatively speaking. By now, we have established a routine, and although having Lucy as a visitor for several days throughout the week, it felt… “normal”. Our new normal, as they say. Nurses and doctors ask less questions, make less adjustments to protocols, react less to symptoms, treat us more like family (the kind you can speak candidly to and perform for less, which is sometimes nice and sometimes not – we may be regulars in the ward and Violet’s temperament may have a reputation of being “unpredictable” at this point, but I do miss the initial gentler attitude they gave her when she was younger and their patience matched the significance of her situation. After years of dealing with her “moods” and developing more intimacy with her character, they treat her less, at times, like the pediatric cancer patient she is that is enduring the unthinkable and trying to cope, and more like an annoying, whiny niece that is more of a nuisance than a suffering patient, complaining about their long hours or other challenging patients while Violet vomits in the background – but I digress).

There was a shift in this round, however, and it wasn’t what I expected.

Admittedly, I have let my optimism get the best of me a bit. Maybe those words aren’t right, because in truth, I’m not sure I believe that is a thing. Optimism, to me, is life. It is the light I live in, the energy I intend to exude whenever possible, not as “denial”, but as faith. As the foundation of my experience.

However, it’s important to stay grounded. I know that. I do my best to balance reality and pragmatism with positivity.

When we got the results from Violet’s last scan, showing that her disease has shrunk to almost insignificant size in her body, I let it carry me upward toward another level of expectation. I let it manifest as actual assumptions about when we were going to be able to get out of this mess and on with our lives. And part of me, inside and out loud, assumed that maybe, just maybe, another round or two was going to cut it.

When we chatted with our Nurse Clinician on admission about when to do another scan and what that might look like schedule-wise, she briefly, almost casually, mentioned that doing a scan was likely almost irrelevant at this point. “It’s always nice to have a look at intervals to see where we are, but unless there are symptoms to be concerned about – signs that she isn’t tolerating treatment any more or that it’s not doing it’s job – a scan is more for peace of mind.”

“Peace of mind? But…wouldn’t a clear scan be an indicator that we stop? That it’s done it’s job?”

She paused and her brow creased – obviously, I had missed something, and we were both abruptly aware that an important conversation needed to be had. Then her face softened and she smiled. “It’s a good thing, Shawna. It’s working. If it were my daughter, I’d keep going. You are lucky to have this option at all.”

“Wait, I don’t understand. What option?”

“Going to the maximum allowance for this treatment protocol.”

Maximum allowance. Ahhh…NOW I get it.

The truth is, since the beginning of this relapse journey, there are certain conversations I just haven’t been willing to have. They have felt scary and premature, like talking about anything other than what we are doing today, or next cycle, is all that is required or valuable. Because, after all, hospice was visiting us daily for the first two months of treatment. The literature states that neuroblastoma relapse has a survival mean of 5%. So “today” was really all I could process, and all I wanted to invite into discussion.

The consequence of that is that I really didn’t understand what the actual protocol for relapse is. The potential treatment scope for this protocol (5-day administration of the chemotherapy drugs irinotecan and temozolomide, combined with 4 days of immunotherapy, every 3-4 weeks) is 17 cycles.

I knew this part. What I didn’t know is that the recommendation, if tolerated, is to go full pull. Because it comes back. It is relentless, this fucking disease. It wants to come back.

For better or worse, this is the tool they use, their only “reliable” method, clinically speaking, that they throw at this shit. And they throw it long and hard and viciously, to the maximum that the body can (hopefully) tolerate.

But Violet is tolerating it. Violet is winning, and, beyond that, going to school in between and running laps in gym class.

She’s going to sleepovers and learning how to play the electric guitar.

She’s worrying about crushes and friendships and her performance in school. She is staying caught up with classes.

She is living. She is living her life, inside of this insanity of a lifestyle.

We all are.

When I got this news, it leveled me. For a day. Took me right down. Another 7 months? Are you kidding me? That means we are, like, halfway done? Maybe? Or maybe we finish this and have to go after it again from another angle? How many fucking months and years is this going to be our lives?

Today. All I need to process is today.

So once I got through that day – the reprocessing of expectations – I realized, yet again, that we are tolerating this. More than that – we are winning. And beyond that, we are living.

It hasn’t been easy. My god, if I’m honest, this winter has likely been the hardest one yet. The second blow was a doozy, and it has taken an incredible amount of focus and will to get control back. We have been battling health uncertainty, business and financial insecurity (all this amid a serious economic downturn), mental instability, identity ambiguity, marital anarchy, nervous system collapse – all the things that come along with this shit show of a situation. But let me tell you, we are still standing. No…we are running laps in gym class, kicking ass in jiu jitsu, building businesses and rebuilding relationships.

Quinns don’t quit.

The road ahead isn’t what I thought it was going to be. Summer will be strained, the momentum I was intending to rebuild with my work is curtailed, and we will continue to be a bit transient for the time being.

But we get to continue to have regular visits with my brother and sister-in-law. My parents will continue to get extra alone time with Lucy, Matt will continue to get bonding time with our dog that adores him only in my absence, and Violet will continue to socialize with staff that has become her second family. And I will continue to savour moments on my own that are tough to come by in the parent phase of life –  walks in the garden at Van Dusen, full audiobook listens on the Coquihalla commute, bubble baths in the ward while the nurses tend to Violet’s “beeps”.

This is life. It isn’t on pause. I can’t look at it like that, even if there are certain things that are. Things take a serious hit when you go through this type of crises – your marriage, your mental health, your financial stability, your future planning. But it is what it is, and we are here, back at home for a few weeks, regrouping and healing and living in whatever way we can.

I’ll take it. I’ll take the win. 7 months is something not everyone gets, and I know that. I won’t take it for granted. At least, not today.