The Story

How it all started...

Well, if you haven’t heard: I have a brain tumour, I had surgery, and I'm in treatment. The following story was written in September 2023.

Oh gosh, even as I begin to collect my thoughts to put this on ‘paper’ I am so acutely aware of how absolutely ridiculous this story sounds. Until now, very few people know the details; and of those, anyone in the medical field is floored and amazed that this is how this all went down.

But, it’s the story, it’s MY story.

So here we go…

Warning: there is no short version of this so if you don’t like to read, this isn’t the story for you.

In August of 2020, months into the pandemic, our family decided to get away into nature for a camping trip. Just the three of us and our very eager one-year-old, approx 80lbs, pup.

We headed up to Squamish, to a campsite that promised great facilities and fabulous water views. We checked in and followed all of the arrows to our numbered site. When we saw our campsite number, the arrow pointed up… WAY up. I put my car in second and slowly went up the super steep gravel, dirt, and rock ‘road’ until we came to the landing where there was a small parking pad with access to a small walking trail with an arrow pointing down… WAY down.

We both decided it might be best to go and scope the campsite first before unpacking a car full of family-sized gear.

We trekked down the trail to a campsite that had the promised views but was basically on a cliff with very little flat area for our 7-year-old and large pup. My mom brain went into overdrive: How would I take Ananiah to the bathroom at night? Would Griffey jump over the cliff into the water? How on earth would we unpack a car with a kid and dog in tow before it got dark?

etc etc etc.

This is the part of the story where I should have said to my camping-loving husband ‘We are heading to Whistler and checking into a hotel’ but remember, there was a pandemic and Whistler was essentially closed to tourists. The next best thing would have been to say ‘I know you love camping and I know we spent hours packing and another couple of hours getting here, but we are going home!’

Narrator: but she, in fact, kept silent.

We headed back up to the car and decided perhaps to unpack and head down the steep road instead of the trail because somehow this seemed safer. Trevor, in his usual Trevor-way, said he would unpack all of it as he didn’t want me carrying anything, all I would need to do would be to take Griffey and Ananiah. Easy enough right?

Narrator: it in fact was not.

…side note…

You know those moments in life where if you had done ONE thing differently in a matter of seconds, everything would have happened differently? Well, this next part is one of those moments.

I took my extremely excited puppy out of the car - asked him to sit beside me while I grabbed my purse and ensured Ananiah got out of the car safely. Simultaneously, Trevor had grabbed the first of many trips' worth of gear and headed down this steep hill. Griffey saw this and immediately started to move down to be with Trevor, I quickly grabbed his leash yelled down to Trevor to wait for us, and in a matter of seconds tied his leash around my waist so that I could put my purse as a crossbody to be ‘hands-free’. As I did this, Trevor responded ‘OKAY!’ to my request that he wait for us and upon hearing his release word, Griffey took off. A running, 80lbs pup, took off downhill having me still tied to him.

I flew down and did multiple summersaults until I landed at the bottom. I regained consciousness to the sounds of Trevor and Ananiah screaming, unable to open my eyes, and with a stranger’s body behind mine, holding me and talking to me slowly. I could feel blood pouring down my face, I couldn’t move my left arm at all and I was in excruciating pain. {When I say pain, please keep in mind I’m a girl who gave birth without any pain medication - this pain was awful.}

I’ll spare you the gruesome details… but the ambulance arrived quickly. They ignored my requests to be taken to a hospital that could give me the proper care (did I forget to mention that I have a bleeding disorder?) and instead, I was rushed to the closest hospital which did not have the resources I needed. I wasn’t allowed anyone in the ambulance or in the hospital with me.

I had a broken shoulder, a laceration to the bone (on the same arm), a gnarly gash on my face, and a concussion.

Here’s where it gets crazy - typically they would have addressed my wound, my break, and my face and then would have done concussion protocol. I wasn’t throwing up, I didn’t have slurred speech, etc. so just 'going home to monitor' would have been the plan. But, because I have a bleeding disorder anytime I am bleeding I need a specific drug through IV (which they didn't have) and if I've hit my head I require a CT scan (which they also didn't have) to check for internal bleeding. Instead of doing any of the above, the hospital, whose nurses wouldn’t come anywhere near me for fear I had COVID, played hot potato with me for HOURS (not addressing ANY of my injuries). My incredible hematologist (based out of the city) got wind that I was in this tiny hospital and clued them into the fact that if I had a brain bleed and died on their watch, they would be at fault. Once she intervened, I was rushed to a hospital that had a CT machine to check for a brain bleed.

Once at a larger city hospital, I was rushed into CT, then X-rays, and then the ER so they could clean my wounds and stitch me up. The nice ER doctor took so much pity on me that he allowed Trevor to come in to be with me. I was resting when he came in, sat down at the foot of my bed, and

softly told us that while there was no brain bleed, the CT showed something in my brain that was not related to the fall and I would need to be referred to a neurosurgeon.

Four days later I had my first MRI and shortly after that, I met with the neurosurgeon for the first time. He was unsure of what it was, it was small and suggested that this ‘thing’ could have been there for years and would likely not need medical attention. He determined he would order an MRI every six months to ensure that it stayed status quo and to monitor it. He explained that the thing with brain lesions, growths, or tumours, is that they are typically discovered fairly quickly because they are almost always symptomatic. But (here’s another mind-blowing fact) my tumour is located in a part of the brain that isn’t responsible for any function - it is basically hanging out in ‘no-mans land’. It would have to be what they consider extremely large, for it to begin to encroach on the neighbouring functions and to be symptomatic enough to trigger a CT. So whatever it is, he emphasized, this was a ‘miracle’ to have found it at this stage.

As unsettling as all of this, I was recovering from a horrific fall and to be honest, I had so many other appointments and complications with my healing that I didn’t have the capacity to worry about this the way that I should have.

Fast forward to the end of 2021 - my first troubling scan. The neurosurgeon met with us and let us know that it is definitely a tumour and by the looks of the growth pattern I would need to have it removed in the near future - he was confident that waiting to see what happened in the next 6-12 months would give us a better idea of what we were dealing with. I lived the next year in limbo not knowing what would happen. In 2022 I had a scan where the doctor put me on notice: one more change and it would need to come out. No biopsy, no messing around, full-blown brain surgery.

Fast forward to this year - my last scan was the final straw. He has decided it is time to take it out before it starts to cause any permanent damage. It is a low-grade tumour (stage 1 or 2) and we are praying it will not require chemo or radiation after.

My surgery is scheduled for October, and to say it’s been hard to deal with would be a severe understatement. You know that saying ‘it’s not brain surgery’? Well…

So, here I am.

My default setting is to go through hard times in a super private way. If you’re here, it’s because you know me. And if you know me, you know I have lived trauma before and did so super privately.

But this is different. This feels like I want to have the story and facts out there on my own terms so that, no matter what happens, I am the one who told it.

My doctor has repeatedly told me that I am lucky, I believe that I am beyond blessed, if Griffey hadn’t pulled me down that mountainside they would never have found this tumour, well, at least they wouldn’t have found it until it was likely too late. So when I’m feeling like all of this sucks so much, I force myself to remember that things could be so much worse. I have the advantage of having caught this so early and the prognosis is so good considering.

So there it is, there’s my story.

xoxo,

Julie