One of the leading promoters at the Fringe has spoken for the first time about his young son’s battle with a rare brain cancer – ahead of a star-studded charity gig he is behind.
Ed Bartlam, co-founder of Underbelly, has instigated the Big Brain Benefit to help raise awareness of brain tumours and vital funding for new research.
John Bishop, Jason Byrne, Aisling Bea and Tommy Tiernan are all lined up for Wednesday’s show for The Brain Tumour Charity. It is being staged less than a year after Mr Bartlam and his wife Lucinda noticed signs of something wrong with then four-year-old Alfie, who started to be sick every morning and became increasingly lethargic.
He had to undergo a seven-and-a-half hour operation to remove a tumour “the size of a small orange” and was then flown to Florida for weeks of specialist treatment after tests showed up a rare and aggressive form of brain cancer.
Mr Bartlam said: “It was in the middle of September when Alfie started to be sick a bit and was complaining about having the odd headache. We noticed he’d be sick as soon as he woke up, but wasn’t nauseous or off his food. We took him to see a couple of GPs. One of them thought he was maybe having migraines. But the symptoms went on. We had a hunch something wasn’t right.
“We saw a paediatrician at the Portland Hospital in London on my health insurance and he suggested an MRI scan. We were told it would take an hour or so and they would ring us at home with the results. But then we were told to wait to see a doctor.
“They’d found a large tumour at the back of his brain. He was put on steroids immediately and we were quickly rushed to Great Ormond Street Hospital on a Friday night, our lives literally flashing in front of us. He had the operation a week later to removed the whole tumour and they said it went really well.
“We were told an oncologist would be in touch to tell us what kind of tumour it was and were actually ready to be discharged the following week when a file of doctors came into the room. We were told Alfie had a type of tumour, an anaplastic ependymoma, which was malignant, pretty aggressive and pretty rare, and the worst grade you can get. They said they wanted to send us to America for proton beam radiotherapy, which is much more targeted than traditional radiotherapy and pretty important for a developing child’s brain. The NHS is building two proton beam centres in the UK, but funds treatment for certain critical cases in America.”
After 33 sessions of radiotherapy in November and December, Alfie’s cancer is in remission. But he will have to get regular brain scans for the next five years.
“He goes in for an MRI scan every few months. It’s pretty horrific. You try to get on your with your life, but when you go back into hospital, there’s that fear.”