Jessica -FGFR1 Mutated Brainstem Glioma

Here's the story:

I was in grade 5 when I started getting severe headaches. They progressively got worse over the course of only a few days and started keeping me home from school and eventually began waking me from sleep. My mom knew something was seriously wrong neurologically and took me to my pediatrician, who told us to go straight to the emergency room at SickKids. 

I was confused about why I was in the hospital since I thought I just had a little virus. I vividly remember being prepped for the CT scan and having to take my new earrings out. I had just gotten them pierced weeks prior. By the time I was done the scan, the holes closed. I was devastated. As a little girl, this seemed like the worst thing ever. It was now late into the evening, and I fell asleep as we waited for the results. 

As I slept, in the small, dark ER room, my parents learned I had a brain tumour. I was immediately admitted to the neurosurgical ward for surgery to relieve the pressure in my brain - the tumour was blocking a critical pathway in the brain leading to a buildup of cerebrospinal fluid which was causing the headaches. I felt so much better immediately after surgery and asked my mom if this meant I was better and could go back to school. I didn't understand that this was just the beginning of a very long journey. 

I had another surgery to biopsy the tumour, but it couldn't be removed due to its location at the top of my brainstem - the area of the brain controlling vital functions such as movement, heart rate, and temperature. Since surgery wasn't an option, I had a port placed and was started on a chemotherapy regimen that consisted of 70 rounds of chemotherapy. The typical side effects followed, fatigue, pain, nausea, low blood counts, and hair loss, just to name a few. 

After 9 rounds of chemo, I woke one morning with symptoms of a stroke. My mom immediately called 911 and I was rushed to SickKids for an emergency MRI. The scan revealed my tumour had not been responding to chemotherapy and had grown significantly. My only option was to attempt to surgically remove my inoperable tumour. 

The tumour was long and risky, but thanks to the incredible skill of the surgical team, they were able to remove a large portion of the tumour. I woke up in the ICU, breathing independently and asking lots of questions - even after major surgery I was curious and wanted to know more. I became known as "the kid with the questions".

Recovery was long and hard. I developed epilepsy, a growth hormone deficiency, and hemiparesis (weakness on one side of the body) - all common complications in pediatric brain tumour patients. Life looked very different, it consisted of MRIs, clinic appointments, and medications. But eventually that became my normal - I went back to school and dance, found my voice in childhood cancer advocacy, finished elementary and high school, and became increasingly passionate about science, research, and medicine.

 Life was good, my health was stable, and I moved from Toronto to Ottawa to start university.

Only a few weeks into my first year, I began experiencing worsening neurological symptoms, and a scan revealed my tumour was back with a vengeance and growing aggressively. Since my tumour was inoperable, hadn't responded to chemotherapy, and has no approved targeted treatments - I was left with proton radiation, a treatment not yet available in Canada. 

My life was flipped upside down once again, and my mom and I relocated to Boston for 30 rounds of radiation, but we made the best of it. 

Between making TikTok videos with my radiation therapists, to pranks with the nurses, and exploring beautiful Boston with my mom, my relapse turned out to change my life for the better.

It led me to where I am today - 3 years post treatment. I am back in university and I spend my summers working at SickKids, the hospital where I was treated, working in a brain tumour research lab alongside the neurosurgeon who saved my life, answering the questions I've had since I was a little girl. In a few months, I'll be starting my final year of nursing school, inspired by the incredible nurses I’ve met throughout my journey. 

It's been over 11 years since my initial diagnosis and I have grown and changed in many ways, but at my core I am still the same kid with the questions - I adore science and am incredibly grateful to be able to spend my career in a position answering questions and caring for others. My cancer journey is not over, my tumour still remains and is monitored with regular MRIs and I will likely require more cancer treatment in the future. But for now, I take things day-by-day and enjoy every moment.