Jed's story

Jed was 17 and in year 12 when he was diagnosed with a brain tumour – changing his life in an instant.

“He was a skilled soccer player when over a series of months we noticed his skills dropping and he began to struggle to even make the team. I also noticed his gait had changed whilst walking behind him one day,” Jed’s mum Louise recalls. 

“He wasn’t having any headaches and didn’t have any other symptoms, so at first we just thought he was going through a growth spurt and went to the physio, optometrist, and visited the doctors a few times.

“On one of the visits to the doctor he referred Jed for an MRI “just to be safe”. While Jed was having his MRI the radiologist came out and asked if they could put a dye into his veins to get a better look at the brain. I knew as soon as he said that, there was something to look at, and my heart skipped a beat," she said.

That night Jed was sitting down doing his homework when Louise received the call all parents dread. Their GP had received the MRI results and directed them to go straight to the emergency room at the hospital where the doctor was waiting to see them.

It was such a shock. As a parent you want to protect your child from everything.Louise, Jed's Mum

“When we got to the hospital they put the scans up from the MRI, which showed a circular tumour on his brain stem. They thought it was a juvenile pilocytic astrocytoma – one of the most treatable less aggressive tumours you can get on your brain.

“The doctors and staff were very reassuring that they would be able to take it out and he would be fine. “Two days later Jed had surgery. The surgery was not as they expected and instead of being able to ‘suck’ the tumour out it was as hard as a rock. They couldn’t take more than 25% - only enough for a biopsy.," Louise said.

It was all so surreal. We kept thinking “this can’t be happening”. How can he go from being on the soccer pitch one day to not being able to walk two days later?Louise

“It took Jed a couple months to acknowledge that he had cancer. It was a hard word for him to accept. He stayed positive, but he was really in denial at first.

“This first surgery required intense rehabilitation and Jed had to learn to walk again and have speech and occupational therapy, followed by radiotherapy for five weeks. This seemed to make a difference and Jed began to slowly recover, but within two months I could see signs that the tumour may be coming back – he had started to slur his speech and even whilst sitting he was wobbly," she said.

That December Jed had his second surgery. The radiotherapy had softened the tumour making it easier to remove. Like any family with a child in surgery, Louise and her family had to sit and wait for the outcome.

"We were so nervous sitting in the waiting room. Every minute passed slowly, but when the surgeon finally emerged we got the best news - the surgery was a success ‘we have got it all’ he said. That was the best Christmas present we could have hoped for, Louise said.

"Jed then had even more intensive rehab with people coming into our home because he couldn’t even sit up and support himself. Mentally he was still switched on. He just wanted to get better and he got back to almost walking again independently with a walker when the tumour returned the following August. It was heartbreaking.

“In December 2018, Jed had his final surgery. He was so scared. It was hard as a parent seeing him like that. Throughout the whole journey, we never thought he would die. He didn’t either. We always thought this couldn’t happen to him, and something would work. Unfortunately, none of the surgeries or treatments worked for him.