Taekwondo and LEGO lover Riley Thompson, from Renfrewshire, didn’t show any signs of struggling to see, so his parents didn’t realise he was blind in his right eye until a routine pre-school eye exam. The five-year-old's eye issues were eventually found to be an optic nerve glioma, a brain tumour that formed on the optic nerve, pressing against his eye and causing his blindness. Riley underwent surgery to remove the tumour, which was successful, but the surgeons had to remove his eye as well.
Here is Riley’s story, as told by his mum, Nicole…
Riley is your typical five-year-old boy who loves taekwondo, playing with LEGO, and dancing around. He’s always been well, no major sicknesses or headaches, and he’s never complained about his vision. I would regularly read stories with him, and he would point out the butterflies and stars, so we didn’t suspect anything was wrong.
Coming into February 2024, we noticed a squint in his eye which was happening more frequently, so we decided to get him checked out at the upcoming preschool eye test. He was there with two other kids who were also being seen by the optometrist. I noticed she kept going back to Riley and testing his eyes.
“She was shining a light into his right eye and expecting him to follow, but his pupil never moved.”
I was worried now about why it wasn’t moving like it should. She gave him a pair of glasses which blocked his good left eye and asked him to point at various things. He couldn’t name anything she was pointing to. That’s when I realised that he was blind in his right eye. Alarm bells started ringing louder when the optometrist told me he needed an urgent appointment with a doctor, so we visited The Royal Hospital for Children in Glasgow. Using a microscope, the doctor said his left eye showed veins and everything, but his right eye only showed up as completely dark.
When we sat down with the registrars, they noticed Riley’s right eye was protruding slightly compared to his left. They even used a measuring tape and found his right eye was a centimetre further out. Even though I’m a nurse, I hadn’t spotted this because I see Riley every day, so I hadn’t noticed any change.
After Riley had his urgent MRI scan, we visited the ophthalmology consultant to show us the scans and discuss the results.
“My heart stopped when I saw a golf ball-sized lump just behind his eyeball – instantly I knew it must be a tumour.”
The diagnosis was an optic nerve glioma which had probably caused the blindness in his right eye a long time ago. Following this meeting, I got a call from the oncology consultant saying that due to the size of the mass and the blindness in that eye, they had to proceed with surgery to remove it. This would basically cure him and would mean he wouldn’t need to go through chemotherapy, but he risked losing his eye too.
Due to staff shortages we had to wait until May for the operation and Riley was in surgery for more than 10 hours. The doctor said they spent over two hours trying to save the eye, but when it was clear they couldn’t, they decided to remove it through exenteration - a surgical procedure that removes organs from a body cavity. Although his eye was gone, finally, he was tumour-free.
Just when we thought the worst was over, Riley faced more complications. He hada fluid leak in his brain, which led to another surgery later in the same month. We finally brought him home on 3rd June, which was his fifth birthday. But complications continued. He developed a tear duct issue and, later in July, an infection in his eye wound. The road to recovery was far from smooth but he’s doing much better now.
"I’m sharing Riley’s story to stress how crucial early detection is. If you notice anything unusual with your child’s vision, seek medical advice!"
My husband, Sam, and I are doing our best to stay strong, though it’s not easy. There are moments of grief, fear, and uncertainty, but through it all, Riley has shown remarkable resilience. If anything, he’s grown more confident after his hospital experiences.
His sister Isla, at just three-years-old, doesn’t fully understand why her big brother looks different or why he was always at the hospital. We’ve tried to explain it gently, but seeing her concern for Riley - always checking if he’s OK - breaks my heart. She’s been so thoughtful and caring.
Riley could have lost much more than an eye to this tumour like so many other children have, so it’s important we do our part to raise funds and awareness of the incredible work that Brain Tumour Research does. We’re committed to walking the 99 Miles in November challenge as a family—to help that ultimate goal of finding a live-saving cure for all brain tumours.
Nicole Thompson
October 2024
One in three people in the UK knows someone affected by a brain tumour. This disease is indiscriminate; it can affect anyone at any age. What’s more, brain tumours continue to kill more children and adults under the age of 40 than any other cancer yet, to date, just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been inspired by Riley’s story, you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure