Taking Responsibility

I would start this off with an apology, but I am trying so hard not to do that right now.

I am trying.

But I am sorry, for not writing lately, for not updating in a long time, for not keeping the communication going.

My last entry was last year. And so much has happened since and come in between. Come in between the entries, and in between all of us (but that’s another blog post).

I don’t know how broad, or specific, or honest, I should make this one.

I’ll start with this – next week, we are back at the hospital. One more round of scans.

In between the last entry, where I reveled Violet’s relapse, there have been more scans. There have been discussions. Questions, though not a lot of answers. And there has been silence – lots of space to stretch out the fear into a thin veil of anxiety that we are riding on like fragile ice.

We weren’t able to get a biopsy last year. We tried. But the first test didn’t give us very much data. Likely it was because there weren’t very many malignant cells to abstract, and because they are in the bone, they can be relatively elusive – tough to grab with the tip of a needle. We were supposed to try again, but then Violet’s mother took her to Taylor Swift and made her walk home in the pouring winter rain which resulted in one miserable cold that made God himself want to social distance from her (nice one, Mom). No one was operating on her in that condition.

So, we came back home to regroup. We went back for another scan.  Then another. And after three snapshots of that spot, nothing much seemed to change. A little brighter, maybe. But nothing new anywhere else. Nothing spreading. Nothing aggressively taking her over.

Which is strange for recurrent NB (that’s neuroblastoma to you Muggles). I know this because I read the literature. This time, I did. This time I needed to know numbers. Prognoses. Data. Because decisions needed to be made. There is no default protocol when this shit comes back.

And the data says, when it comes back, she’s got a 5% of getting out alive.

That’s the data – the thin ice – we have been living with, for months.

Living with. Sitting with. Tossing around in our minds and hearts and contemplating as if it were some theory, some book passage, some concept to consider in some academic, impersonal way, and then let go of and carry on with the day. With life.

Because, as far as we are all concerned, there ain’t nothing to be done. Not yet. Not until it gets worse.

Our oncologist even organized a panel of the leading NB experts from across the continent to review her case. And they all came up dry, or, at least, without a single consensus on a best practice, a confident conclusion, a strategy they could sink their teeth into.

We just don’t know enough about what’s going on.

What makes it all so complicated? Why don’t we just DO something?

Well, there’s the fact that the only “evidence” we have is the scan. The MIBG, designed specifically to detect NB cells, lights up, and there aren’t really any other reasonable explanations for that, especially since it lights up every time, and a bit brighter on the last. This suggests NB for sure, considering that spot wasn’t there last summer.

And yet, we couldn’t get the biology. We didn’t get a successful biopsy. So, in reality, the less-than-perfect scan isn’t an undeniable bet.

Also, generally speaking, malignant NB cells often produce large amounts of catechlomines, which are broken down in the body and show up as specific acids in the urine. Violet’s urine tests keep coming up clear.

And then there’s the additional complication, or at least level of complexity to things, where Violet’s original NB tests showed she had a rare genetic mutation in her cells. This “ALK” mutation made her particular disease harder to treat, but, on the flipside, gave us access to a particular medication called and ALK-inhibitor – a trial drug that Violet took alongside her treatment (at least for part of it, though some bureaucratic error got us kicked off mid-protocol) that gave an extra advantage to her therapy. And I would venture to guess, if you asked me (and I’m no medical Muggle now, alright?) that this was a significant factor in her success.

But without the biopsy piece, we don’t know if this recurrent disease is also the same mutated gene or something totally new.

Again, one would assume it is the same, but science is based on evidence, not conjecture.

We do, however, have access to this drug once again, due to some incredible persuasion from our oncologist to the pharmaceutical company regarding our suitability without proper “biology” to support it. We’ve got the drugs armed and ready for use, and although they are similar to chemo, they can be taken orally, at home, with (hopefully) NO HAIR LOSS (this has been the single only fear Violet has expressed about the return of the big “C”).

One problem – if we start this, and we fight it off, and the body develops any resistance, we no longer have this card to play. We go back to the drawing board, which means aggressive chemo, and all the ugly stuff that comes with it.

So, we’ve hesitated, waiting instead for some lightning bolt that will tip the scales one way or the other.

In the meantime, our doctor also inquired with radiology to see what their thoughts were. Radiation isn’t something they usually consider in this case because it is a spot treatment – a “bandaid” for a systemic recurrence of a disease that will almost certainly spread elsewhere. Radiation could successfully treat the spot for now, but then what?

And yet, as far as we know, there’s just a spot. Just. One. Spot.

The Radiologist agreed that she would be willing to treat it, but as is the case with almost any cancer treatment, it’s risky. It’s not like taking an Advil. There are serious side effects from radiation, as there is from chemo, and ALK-inhibitors, and all the rest.

So, the Radiologist, as a lark, chatted with a surgeon. “What do you think about this?” she showed the top pediatric surgeon at BCCH, who replied, “Sure, I’d operate on that. It’s right on the edge of the bone. No problem, it would be simple and quick.”

After hearing that, this has stuck with me. “Simple and quick.” Dear God, yes! Cut that shit outta there!

But the experts didn’t feel it was a simple solution. After all, recurrence is in the system. It’s not a tumour that is growing again, it’s cells in a new place in the body from the original diagnosis, meaning that they have travelled through her bones and landed elsewhere. Meaning that the cells can collect again elsewhere. Meaning surgery might be “nice for now”, but if it’s invasive, what’s the point?

Basically, the NB Expert’s message was, if she’s gonna go anyway, why ruin her time here healing from an operation?

Grim, right? Honest, and fucking grim,

At this point, I could expand on life beyond these complications. I could tell you how hard some things have been. I could explain about my own health challenges, or my marriage tip-toeing the line of destruction, or the political climate wreaking havoc on my personal relationships and nervous system, or the financial and business issues we’ve been trudging through, or the mold problem we found that has left us with a single half bath for months that all four of us fight for the use of day in and day out.

I could tell you all of that, but I’d be missing the point.

I’m finally working on my book – the one I’ve been trying to get some traction on for years. I’m finally writing it because I finally feel I know what that book is about – the one that’s been trying to eke its way out of me long before Violet’s illness. That book is about choice. About ownership of one’s life. About how hard it has always been for me to take the reins on my own life choices and not constantly shoulder check for the approval of the world.

I’ve been trying to figure it out since before I can remember, building an entire CAREER out of preaching the importance of inner wisdom and confidence and self-worth. Of owning your own reality. Of not needing validation from others.

And yet, I’ve continued to live my life in complete opposition to that wisdom. I write the blogs and sermonize the insights and completely paralyze myself when actually faced with any personal decision of consequence, needing desperately to be told that I’m ok. My decisions are ok. I’ll be ok. I’m a good person

And then life hands me this – a panel of the world’s experts on my child’s fatal disease telling me that the ball’s in my court on this one. No right answer. No validation from anyone that any decision you make is a confident YES. “Here’s all the conflicting facts and figures and perspectives. Your baby’s life is on the line. Good fucking luck.”

“I don’t envy you,” the NB Expert told me at the end of our call, his refined bedside manner exploding out at the seams.

Thanks.

My entire life I’ve leaned into the value of intuition – of trusting your gut, following your heart. Once upon a time, I was good at trusting that. I travelled around the world with little to listen to but my own soul. But I wasn’t a mother. I wasn’t in the center of something that feels so incredibly big that I can’t see through, or around, or even within it. I can’t see anything – I’m in a vortex of a vague, swirling nebulous and I have to choose. I have to act, blind to logical direction, cut off of any maps or charts, guided only by a compass of instinct, faith and love. Jesus, I can’t even choose what to eat for dinner.

But this is life. This is what it gives you, exactly what you need. I’ve asked for this since day one – proof that I can trust myself. Opportunity to be accountable. Awareness that there are no right answers. Just life unfolding. Just choice, and then….

I’m still waiting for that inner wisdom to signal something, and I’m hoping that these scans help with that. Anything to sink my teeth in. But the stakes are different this time. This time, it’s all on me.

…stay tuned…