Every day in the UK, around 10 children and young people and their families are given the worrying, overwhelming news that they have cancer. September is Childhood Cancer Awareness Month – a chance for organisations across the world to put the spotlight on this issue. We support families like Billy Thompson’s and his story, written by his mum Ellie, highlights the urgent need to accelerate cures for childhood brain tumours.
A whirlwind of joy
Ellie writes: Billy was captivated by Freddie Mercury and Queen, often imagining what it would be like to be a rock star when he grew up. But being so young, his dreams shifted. One day, he wanted to be a firefighter, and another day, a teacher who could help children. When he was four, he asked me, “What’s it like to be an adult?” On the night we learned he had an incurable brain tumour, I was tucking him into bed when he said, with childlike excitement, “Mummy, I can’t wait to grow up.” My heart broke as I kissed him, knowing he would never get the chance. He didn’t live to see his fifth birthday.
Billy was a whirlwind of joy, capable of brightening anyone’s day just by being around. For four precious years, he was everything a child should be—kind, funny, and sweet. Everyone who met him adored him. He loved joking about silly things like bogeys and burps and was incredibly close to his big sister, Maddie, who is now seven.
But in September of last year, things began to change. He started experiencing night terrors and stomach aches, and suddenly, school – a place he once loved – became a source of anxiety. He withdrew from his favourite activities like rugby with his friends and Stagecoach with his sister. He lost confidence but couldn’t explain why. By late October, he was unsteady on his feet, increasingly frustrated, and constantly drooling. His eyes seemed weighed down with exhaustion.
We went back and forth to the GP for weeks – months, even. We pushed for blood tests and an ultrasound, desperate to find out what was wrong. On 31st October, after he fell over at school again, my husband, Jamie, joined the dots and feared that our poor little boy had a brain tumour, so we rushed him to our GP that afternoon. The doctor assured us everything was fine and there was nothing more to be done. “Anxiety. Please follow up with your health visitor.”
I held Billy’s hand as we walked out of the surgery, feeling abandoned, lost in a world where I knew something was wrong but had nowhere to turn.
Ellie Thompson
Billy The Brave
A week later, Billy fell out of the car and down the stairs, twice. We didn’t bother going back to the GP. Instead, we went straight to Epsom Hospital, where a compassionate young doctor named Jen trusted our instincts and ordered a CT scan. It revealed a mass. The following 24 hours were a nightmare that drove a wrecking ball through all our lives.
We were rushed to St. George’s Hospital, where an MRI confirmed our worst fears: Billy had a DIPG, Diffuse Intrinsic Pontine Glioma, the most aggressive and deadly form of brain cancer. This horrific tumour invades the PONS area of the brainstem, often described as a tumour that feeds off a child’s developing brain. Surgery was impossible, and effective treatments were non-existent.
Our world collapsed. We were thrown into a hellish tunnel but had to keep going for Billy. He was too young to grasp the severity of his condition but knew he had a ‘boo-boo’ in his head. He was awake when they bolted his head mask to the bed for 13 rounds of radiotherapy.
It was terrifying for him, being alone in a room with a giant machine whirring around him, but he’d bravely say, “I am brave, I a strong, and I can do scary things.” We started calling him “Billy the Brave”, a nickname that stayed with him.
Ellie Thompson
Under-researched and underfunded
Radiotherapy was only a temporary measure and caused terrible side effects that would see the start of the steroids that both rescued and ruined him. Screaming headaches, so much sickness. Our poor, poor boy. The combination of the tumour and the steroids ravaged his body and mind. They transformed our joyful little boy into a nervous, angry child, unrecognisable in the end, both physically and mentally.
DIPG (or diffuse midline glioma) is a severely under-researched and underfunded paediatric brain tumour. It’s a childhood cancer that’s essentially a death sentence.
Astronaut Neil Armstrong’s daughter died from a DIPG in 1962, and since then, nothing has changed in terms of treatment or prognosis. These children, often called the “forgotten ones,” receive little attention or help.
We battled constantly by researching trials all over the world, talking to experts in New York, Washington, the Netherlands, and Australia.
There was an immunotherapy trial at Great Ormond Street Hospital, and we agonised over whether, if qualified, we should sign him up. These kids are ultimately guinea pigs, enduring extremely gruelling treatment with no promise of a cure or even extra time. Is that how we wanted him to spend his last few weeks or months?
In the end, it didn’t matter. His cancer advanced so quickly that he wasn’t eligible for any trials. We sourced the compassionate drug ONC201, but it was too late. The clinic just didn’t react in time. In the two weeks it took to arrive, Billy had lost the use of his legs and his left arm. ONC would not help him recover what he had lost.
An early birthday
Despite everything, Billy continued planning his future birthday. He was due to turn five on 15th April, but we knew he might not make it, so we brought it forward. He wanted a ‘Stay Puft’ Marshmallow Man cake, an Iron Man cake, and a Freddie Mercury cake.
“When I’m five, will I be better?” he asked. How I wished I could tell him yes.
He rode around town in a Ghostbusters Ecto-1 and arrived at his party to find all his family and friends there, cheering as he cut into his three cakes. But he knew it was early. “Am I really five now?” he asked repeatedly. In the end, we told him yes.
I clung to the hope of a miracle even as I watched Billy slip away. The tumour stole his beaming smile and beautiful eyes and took away most of his ability to speak, leaving him slow and slurred. His right eye closed permanently, and he became even more tired and weak. He accepted it all with a bravery that broke my heart. It soon became clear he wouldn’t reach his actual birthday. He slept more, struggled to urinate, and started choking on his food.
On 31st March, 141 days after his diagnosis, I held Billy in my arms and gently told him he didn’t have to fight anymore. My heart shattered as I whispered that we loved him over and over, even after he took his last breath. It was the final chapter of a horrific journey, and Billy needed our strength to help him find peace. My cheeky boy, who once loved to show off his muscles and say, “Welcome to the gun show!” now rests in his bedroom as ashes in a wicker basket, with his teddy bear on top.
His death was tainted by incompetence. He was failed by so many—from the GP who dismissed our concerns, to the palliative care team who neglected to provide the medication he needed in his final hours. Instead, they arrived 20 minutes before he died and laughed in our kitchen as he lay in my arms in the living room, taking his last breaths. Billy deserved so much better. We are left traumatised and angry, in addition to the overwhelming grief at the loss of our beautiful boy, whom we will carry for the rest of our lives.
Maddie is coping, but she misses her little brother terribly. We have a photo of them framed in the bathroom, taken last October during a mini heatwave, on the beach at West Wittering. She treasures that day, saying, “Everyone was happy and not even a tiny bit sad.”
We will continue raising awareness for DIPG research in Billy’s name. If this cancer was better understood, maybe Billy could have celebrated more birthdays, blown out more candles, and grown up to become a teacher, a firefighter or the next Freddie Mercury. One thing is certain: Billy will always be our rock star.
Every nine days, a child in the UK is diagnosed with DIPG. You can support research efforts by donating to The Brain Tumour Charity or to Abbie’s Army.
For further reading on this type of brain tumour: What is a DIPG brain tumour