Need to Know

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Deep breaths.

It’s amazing the things we take for granted. At the most foundational level, the ability to take deep breaths – to breathe – is the gift of this life. The miracle with live with every day.

Right now, we are back in the hospital, and Violet’s pain has moved into her abdomen, under her rib cage. Her ability to breathe deeply has been minimized, and with it, her most basic coping strategy for nausea, for pain, for fear.

But we are here, exactly where we need to be, and we are going to tackle this. We are going to get back on top, get back to breathing without having to pay so much attention to it.

I would feel guilty about not keeping everyone up to date more, but I can’t. I can’t because there’s too much to say, and no capacity to say it. And also, I have realized that right now, less is more. Less explanations. Less interpretations. Less attention on what is, and more focus on what we are moving toward. On healing.

With that in mind, I also acknowledge that there are hearts and minds all over the world that are invested in Violet’s journey – our whole family’s story – and that updates are necessary. This village and community that has carried us through this and continues to be our strength and light deserves enough narrative for peace of mind. Just enough. I know in a way it is similar to what I want from the doctors and nurses and counselors and professionals that want to keep me in the loop on their thoughts and strategies and prognoses.

Just tell me what I need to know.

For now, I can share the information that matters most right now. The rest of it is deep and complex and difficult to put into words anyway. At least right now, while we are all trying to process this incredibly transformational time. Maybe that’s what this memoir is for, if I ever finish it – the processing stuff. The nitty gritty that doesn’t have a language yet. That stuff might have to wait for the book.

We spent two weeks back at home, which was an incredible blessing considering that we almost used up the entire three weeks of the cycle in the hospital. Technically speaking, the protocol for now is that we repeat cycles every three weeks where we are admitted to BC Children’s for six days of treatment – the first day consisting of one oral and one infusion chemotherapy drug, which continues for three days, and five days of immunotherapy in tandem beginning on the second day of the cycle (called chimeric, this is a drug that is used to trigger Violet’s body to fight off the cancer cells itself). Once completed, we stay in admission until Violet’s body recovers enough to handle things outside the support of the team here, which means her nausea, GI issues, appetite, blood pressure, etc. have all resolved to the point of being manageable at home. Then, ideally, we get to leave and return “to life” until the next cycle begins.

However, for the first cycle, it took a significant amount of time to get back into balance, as we were dealing with the initial burden of the disease and figuring out how to coordinate medications (both in dosage and in timing) to practically administer at home, as well as the proper medical care we might need in the Okanagan, so far from the Vancouver hospital. And Violet, and obstinate and self-advocating as she is, was determined to be there for the first day of school, which technically fell on a day well after that second cycle could begin again. She was adamant, and our amazing oncology team wanted nothing more than to make that happen, assuming her safety was paramount.

And we pulled it off. She not only got to have a final week of summer in the sun, but also the entire first week of Grade Eight.

Going home was wonderful. But also, incredibly challenging in all those ways I don’t yet have the words for. Impossibly hard stuff, the paradox of temporarily returning playing out its complicated dance in ways I can’t explain.

…I’ll put it in the book…

We stayed, we savored, we managed the overwhelm, both in the joy and the anxiety of adjusting to a world that isn’t quite accessible to us in the way it was before. And then, we packed up and came right back to it.

And just in the nick of time.

We pushed the timeline, and I know it. But with Violet’s health so close to the brink, there are so many delicate factors at play to maintain equilibrium. She needed that time at home, with her friends, to start of the school year feeling “normal” – as normal as one little girl can be in middle school with a bald head (which, by the way, she owned like a Boss). Health isn’t just balancing our biology. It’s emotional, mental, spiritual, sometimes significantly more than it is matter.

But her cells did have something to say about it, and they are saying it loud and clear right now – we need to tackle this burden again and keep up the momentum.

Everything is relational, and coming back to the hospital this time was, in many ways, a relief. I am less afraid than I was the last round, and much more prepared. We are working out the kinks, so to speak, including managing blood pressures, accepting realities, and figuring out logistical issues that we’ve needed to address.

One big one has been transportation. We got a ride out from Matt the first round and he drove back to pick us up. But that meant days off of work, which isn’t sustainable, and figuring out last minute coordination of Lucy, accommodations, etc. Since we literally don’t know when Violet will be discharged until the last minute (the day we thought we would be discharged, we organized care for Lucy, a time for Matt to leave and come pick us up, check out time at Ronald McDonald House, only to find out an hour before we thought we would leave that they wanted to keep her for another few days), that kind of engineering of time and resources was just too complicated.

And we might be doing this three-week dance for the next year or so, for all we know. We needed a better strategy.

So, despite financial restraints, we finally purchased a family car.

It was scary – taking on a fiscal commitment right now isn’t ideal and, for context, Matt has been struggling with a spectacular Lemon of a vehicle for over a year that has been an absolute nightmare, making the possibility of taking on another one an enormous fear. But with little choice in the matter, we bit the bullet.

And we could not have done it without support.

I hate that so many factors of this are hard. The stress of this kind of health issue puts unbearable pressure on family dynamics and relationships, keeps mothers and fathers distanced from their children and each other, keeps everyone from doing anything “normal” or social or “fun”. Oh yeah, not to mention, the actual cancer part – the disease that makes a child suffer and face their own fucking mortality every single minute of the day. But when you stack on the financial stress...?

So, I say this from the bottom of my heart – thank you to every single gesture of generosity that has been offered to us. No one likes to have to receive in this kind of way. But sometimes there is just no choice. And the simple fact that a few dollars can buy Violet the cheeseburger she suddenly craves at 10:00 at night after not eating for days, even if (and it usually does) end up sitting cold on the table, brings a peace of mind that carries significant weight in this situation.

Flow. That’s what I learned in the beginning of this journey, and it is the lens in which I have learned to look at all of this – at life – with more appreciation. We must learn to live in the flow. Right now, I am trying to relax as much as possible and “open up” again. And this metaphor is manifesting in profound ways, including in a literal sense. Violet’s body needs to relax into the flow – to make space to breathe. That’s how we return to balance. We allow things to move, to try to stay out of the way of the process of things, avoid resisting. I am making this my mantra right now. Stop resisting. Let things flow. Be grateful. Trust.

Everything finds its way back to homeostasis. We’ve had a lot of things out of whack for a long time, and I’ve been resisting. Viciously. And it’s time to let go and allow.

I will do my best to keep the updates coming, and perhaps with less words and more “facts”. Less is more (I say as I wrap up another 1500 blog post). The facts are these: Violet is where she should be. We are fighting the good fight. We are allowing and letting go. And I am grateful.