Dad's moving call for more brain tumour research

Joe Wilson, who had battled cancer since he was just eight-years-old, died at his family home after a determined battle.

His heartbroken father, is now asking why, despite killing more children and young adults than any other cancer, brain tumour research remains hugely underfunded.

Today, as part of National Brain Tumour Awareness Month, dad Paul Wilson is sharing Joe's story in a bid to help change that...

Waking in the night with excruciating headaches, doctors initially told Joe Wilson’s parents he was suffering from migraines.

Then just eight years old, his parents grew increasingly worried as the attacks worsened. One day, while sat watching television, Joe turned to his father and said; “daddy, the pain is behind my eye”.

Dad Paul Wilson, of Carlisle, said the diagnosis didn’t make sense, and he just knew there was something more sinister at play.

“We were at the hospital and I told them I wasn’t leaving until they could tell me that my son did not have a brain tumour,” he remembered.

“He was seen by an ophthalmologist who straight away saw there was massive pressure behind Joe’s eyes. A CT scan confirmed our worst fears.”

Paul, a former RAF corporal, and wife Mandy, a showjumper and riding instructor, were left devastated.

“We told Joe there was something growing in his head, behind his eye, and it needed to be sorted. Joe was always so brave,” he said.

Within days he was in surgery at Newcastle’s Freeman Hospital, with the operation lasting nine hours. But he recovered well and was home in 10 days.

“We were told that Joe’s tumour, a glioma, was in his right frontal lobe and had grown to the size of a lemon,” said Paul.

“It was classified as low grade, with some elements of high grade, and there was a 70 per cent chance of it coming back.

“Within no time at all Joe was back to his normal, energetic self. He was tearing around on the ponies and up to all sorts. He had always been an extrovert and very positive about life. It was almost as if he knew he had limited time and needed to make the most of every moment.”

Joe had scans every six months to see if there was any change. Five years on, just as they had started to relax, their worst fears were realised when they were told the tumour was back.

Then 13, Joe took everything in his stride as he made the daily 90-mile round trip to Newcastle for radiotherapy.

Paul, who by this point had left the RAF, said: “Joe and I were alike in many ways. He had the thick hair which I’d had in my earlier days and he found it really hard when his started to fall out during the treatment. It was the only time I saw him in tears.”

Now at secondary school, at William Howard in Brampton, Joe bounced back well, playing football, cricket and riding.

He later went on to the University of York to study sports science and injury management. Paul remembers it well, with Joe recently having had a scan showing he was tumour free.

“We loaded the car up with all his belongings and dropped him off to start his new life,” he recalled. “Within two months he met Tasha, a wonderful girl, he had some great housemates and was having the time of his life. Tragically his happiness was so short-lived.

“We had a phone call out of the blue in February. Joe had been admitted to hospital with a seizure.”

The tumour was so aggressive it had grown back in a matter of weeks. He was transferred from York to Newcastle, back under the care of consultant Simon Bailey. Within days Joe was back in surgery but this time the prognosis was extremely poor.

“The tumour was back but this time it was high grade, on the other side of his brain and there was no cure.

“He could have chemo and potentially radiotherapy although there was some doubt about the latter as he had already had so much treatment,” said Paul.

“Although Joe did come home, he was extremely poorly after the surgery. His head was swelling, there was great pressure building up and post-op bleeding.

“We were told that he was dying and could have as little as two weeks. Joe knew the tumour was going to kill him but we couldn’t bring ourselves to tell him just how little time he had.”

Told he was coming home to rest, Joe returned to Carlisle and girlfriend Tasha took time off university to spend with him.

Two weeks before he died, they got engaged.

“We were happy for them although we didn’t really talk about what he felt the future might look like. It was very touching to see how much they loved each other and we were pleased to be able to share those final weeks with her,” said Paul.

Joe held on until Tash’s 19th birthday, but passed away the following day, on April 30, 2013. His dad described his last moments.

“In the end I lay with Joe on the bed and he died with his head on my shoulder, and with his fiancée, his mum and grandma at his side,” he said.

Paul said life has never been the same since Joe’s death. Now he is calling for changes to brain tumour research funding, saying that without more money people are continuing to die.

“Joe was our only child and we lost him when he was just 20. You try to get on with life but you never get over a loss like this,” he said.

“We are fortunate to have lots of good people around us including a big family. We have get-togethers twice a year and it just seems so cruel that he is not here with us.

“When people ask if we have children I tell them we have a son called Joe but that he passed away.

“Brain tumours kill more children and young adults like Joe than any other cancer, yet just one per cent of the national spend on cancer research has been allocated to this devastating disease.”

Joe’s family continue to raise thousands of pounds for the Brain Tumour Research charity, but Paul now wants to see more money invested by the Government to bring it in line with other cancers.

“To date, our fundraising total stands at just over £21,000 and we take comfort from knowing that Joe was loved and is remembered.”

To donate in memory of Joe visit https://www.justgiving.com/remember/68552/Joseph%20-Wilson

Health reporter