A blink then darkness.
That split-second began 16-year-old Tyler’s journey with an ultra-rare brain tumour known as Parasellar Ganglioma. He is one of just 10 known cases in the world.
Shortly after Tyler’s birthday in July 2022, Tyler came home from school, sat on the couch, and suddenly lost his vision. He had been suffering from migraines with vomiting and visual aura, prompting his doctor to order an MRI scan with the results coming a few days later.
Tyler and his mum, Kylie, then heard those devastating words. He had a six-centimetre tumour in his brain.
“I will never forget the day our doctor said she had bad news. We were lost for words,” Kylie said.
“We were told to immediately bring him into Westmead Hospital. So, we went home, packed a bag and off we went.”
The MRI scan showed a type of brain tumour with hydrocephalus, a condition where there is a build-up of fluid in the cavities deep within the brain due to the growth blocking its normal movement.
Within a week of admission Tyler went into surgery, led by neurosurgeon Dr Jun Kim at Westmead Hospital, where doctors discovered the tumour was growing out of the optic nerve.
The team called on the expertise of their colleagues, including Paediatric Oncologist Prof Stewart Kellie from The Children’s Hospital at Westmead (CHW), for further specialist input.
Together, they decided to remove as much of the tumour as they could and took tissue for laboratory examination. The results of the biopsy were better than they could have hoped for.
“Thank goodness, [the tumour] was low-grade,” Kylie said.
Tyler was diagnosed with a rare tumour called Parasellar Ganglioma, or ‘Timmy’ as he named it.
“Gangliogliomas are relatively mature tumours that typically don’t behave like brain cancer and often surgical resection is the only treatment option required,” Dr Kellie said.
This type of tumour is usually found in children aged five to seven years old but in Tyler’s case it was slow growing, so most of his symptoms hadn’t presented until much later in life.
“It is kind of like a big math equation, it just explained a lot of things that happened to me as a kid,” Tyler said.
I’m still in a state of shock in I can’t believe it was hidden for all those years, it is quite fascinating to me. With this whole experience, I look back on it and think ‘wow’ - it is truly quite amazing how it has evolved over time compared to what others can do.”
A week following surgery, a shunt was inserted into the fluid-filled cavity to help relieve pressure on Tyler's brain. He was in hospital for just over a month and had to relearn how to walk, talk, and do things for himself again with the help from Westmead’s physiotherapy and occupational therapy teams.
He now sees a multidisciplinary team of specialists on a regular basis at CHW, including neurology, the Eye Clinic, the Endocrine Clinic, occupational therapy and is set to start physiotherapy.
Tyler’s biggest challenge is managing his vision as he lost all sight in his left eye and has difficulties with peripheral vision in his right. It has impacted his studies, ability to play his beloved sport of soccer, managing staircases, and he will never be able to drive a car.
But through it all, his optimistic nature shines through.
Tyler is an extremely positive person, especially for someone that has endured what he has been and continues to go through. He lives his life as best he can and tries to not let any of it get him down, I couldn’t be prouder of him,” Kylie said.
“He’s excited for his future and wants to pursue a career in paediatric occupational therapy. So far, he's doing so well and hasn’t fallen behind at school which is fantastic. Although he won’t be able to play soccer at this stage, he’s looking into the possibility of finding a parasport that interests him, so never say never.”
Tyler’s journey has inspired him in many ways, so much so that he hopes to become an inspirational speaker, sharing his story to help other children and adolescents in hospital.