Your Complex Brain

Why Jack Conway is participating in a VR research trial to improve his vision after a brain tumour

October 03, 2023 Krembil Brain Institute
Your Complex Brain
Why Jack Conway is participating in a VR research trial to improve his vision after a brain tumour
Show Notes Transcript

Jack Conway, a 19-year-old from Toronto, Canada, is a huge fan of video games and roller coasters. His family includes his mom, Kim, his dad, Steve, and his older brother, Brian. Jack plays a variety of video games, from Call of Duty to Minecraft, and he loves roller coasters. 

He also has a vision impairment due to a brain tumor he had when he was a baby. He was one of the first children in the world to receive a certain treatment for the tumor, and he spent a lot of time at SickKids hospital. School can be challenging for him because of his vision, but he tries not to let it get the better of him.

He has done a vision study using virtual reality goggles, and it has improved his vision and quality of life. He is excited about the potential for technology to restore vision and is happy to have been accepted into all six college programs he applied for.

The Your Complex Brain production team is Heather Sherman, Jessica Schmidt, Dr. Amy Ma, Kim Perry, Sara Yuan, Meagan Anderi, Liz Chapman, and Lorna Gilfedder.

The Krembil Brain Institute, part of University Health Network, in Toronto, is home to one of the world's largest and most comprehensive teams of physicians and scientists uniquely working hand-in-hand to prevent and confront problems of the brain and spine, such as Parkinson's, Alzheimer's, epilepsy, stroke, spinal cord injury, chronic pain, brain cancer or concussion, in their lifetime. Through state-of-the-art patient care and advanced research, we are working relentlessly toward finding new treatments and cures.

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Thanks for listening!

Hello. My name is Jack Conway. I am 18 years old and I love video games and roller coasters. Well, I can't say explicitly how people might describe me or especially my family, but they would say that I am very passionate about politics and theme parks, and they know I love my video games. So in my family, I have my mom named Kim. I have my dad, Steve. I have an older brother named Brian who I don't see much because he's in college. We had another member of our family, our dog, Charlie. Unfortunately, we lost him back in the end of January. But right now it's just the three of us for the most part. When my brother comes home, it's the four of us. But, you know, that's kind of my immediate family.


So I play video games with my friends or by myself, whatever, just kind of doing whatever I feel like doing. I play a variety of games from Call of Duty to Minecraft and all sorts of things. So I'm able to kind of express my creative mindset in Minecraft or just kind of unleash any stress or whatever and Call of Duty, that sort of thing. So I have those releases and then I also love rollercoasters. You could pull up a picture of a roller coaster and I could either name the coaster park itself or both. I'm kind of a roller coaster nerd. But yeah, I absolutely enjoy riding and researching roller coasters. And other than those too, I'm also into model trains, which is something I'd like to get into. I have some stuff to build a model train layout. We don't have the space for that. That's the only thing we're missing.


When I was six months old, I was diagnosed with an optic pathway glioma brain tumour, which is a tumour that grows on the optic nerve. And that tumour, even after treatment with chemotherapy, excuse me, did damage the optic nerve. And therefore I have a vision impairment. I do have a vision impairment. It's not a huge impairment, but it's a significant one where I do have trouble reading small fonts and according to the government I can't get a driver's license. When I was diagnosed, we did meet Dr. Bouffet and he ended up being my neuro oncologist for the duration of my first battle. He put me on a I believe it was a 14 month protocol of being Vincristine. I finished my first rounds of chemo and beat the tumour for the first time, and we still see him every few months for MRI's or appointments and that sort of thing. And then when I was diagnosed I was put on Vinblastine, which is a chemo treatment that he created himself along with members of his team. And that treatment is now the number one course of action that they will use for other children that are diagnosed with the same tumour that I had. And I was one of the first children in the world to receive that treatment. I do understand the fact that I spent my first birthday on Christmas at SickKids. I spent some time there for appointments and stuff When I was on treatment. The second time would take the whole day and be 6 hours of waiting for treatment. Most cases, I would say I probably, if I add it up all the time, I've probably lived at SickKids for probably four years of my life in total with all the visits and stuff combined, which is a lot of time.


School can be challenging for me specifically because of my vision. It can be difficult to engage in uncertain activities. In Vizag, for example, I enjoy being active, but when we were doing games like badminton, it was impossible for me to see the birdie. I actually couldn't play badminton because I had that inability to play or kind of discern the birdie from the surrounding area. Even when we tried spray painting it different colours to help it stand out, it still didn't work, I would say for small text. So if I were to pull something up on my phone, I would be like this close to reading it. So my nose would be a couple inches from the screen and that would be the same with books and in fact with school textbooks. My nose would be pressed up against the page of the book. So it's mostly with reading. I do have good visual observations just around in general, so I can see things like I could