All our little Billy the Brave wanted was to grow up and be ‘a big boy’. We knew nothing could save him from the cancer that killed him. But the NHS’s failure made our anguish even worse. Now things MUST change

In September 2023, my four-year-old son Billy started school. He was excited to be a big boy, make new friends and join the minis team at the local rugby club. His whole future was so incredibly bright. He was so incredibly happy.

Two months later I found myself in a hospital room while a doctor told me that my beautiful little boy had ‘a large mass’ in his brain. He was going to die.

Our world imploded. And the five months Billy had left were heartbreakingly difficult for me and my husband, Jamie.

Billy was happy-go-lucky. He loved superheroes, dinosaurs, rugby, riding his bike and scooting. He’d arrive at playschool on his trike wearing a different superhero costume every day.

He had looked forward to going to ‘big school’ for months, but almost as soon as he started, things began to change.

He became unsettled and frustrated. He had terrible night terrors. He complained that his legs ‘were too tired to walk’. I started leaving work early so I could get a parking space close to school because I’d often have to carry him from the gates to the car.

Our confident little boy became anxious about leaving our home in Surrey. He stopped wanting to play rugby and go swimming. He couldn’t explain why. His speech regressed – he seemed to lose the ‘big boy voice’ he’d developed. His eyes looked heavy and tired. They were such small things – things that maybe even his teachers wouldn’t notice. But we noticed.

We’d been back and forth to the doctors for months, knowing something wasn’t right. Blood tests were clear, ultrasounds revealed nothing. I was starting to feel like one of those mothers.

On October 25, I emailed his school: ‘I just can’t believe this is the same boy… we just want our old Billy back!’

Six days later, his headteacher called to say Billy had fallen over in the playground ‘out of the blue’ – it was the second time that week. He’d also fallen over at home, while going upstairs.

I got off the phone and told Jamie, who whispered something that stopped me in my tracks.

He had suffered an illness in his early 20s that had triggered encephalitis – swelling of the brain – and recognised that loss of balance could be a symptom of something neurological. ‘I think Billy might have a brain tumour.’

Ten minutes later, we were on the way to the GP. But after examining him, the doctor told me with confidence: ‘There’s absolutely no way he has a brain tumour.’ A brain tumour meant excruciating headaches or weakness down one side, he reassured me. Billy’s blood tests had been clear. His problems were likely to be mental health related – separation anxiety perhaps.

We were given the number of our local health visitor. We left but deep down I knew something wasn’t right. A week later, on November 7, we took Billy to A&E – with the GP seeming not to believe there was anything serious wrong, we had nowhere else to turn.

A doctor listened to us. Billy looked OK, she said, but because of our instincts and because we knew him best, she would order a CT scan. It found a mass in an area of Billy’s brain called the pons, which helps control unconscious processes such as breathing and sleep.

Twenty-four hours later, after an MRI, we had a diagnosis: diffuse intrinsic pontine glioma, or DIPG, a devastating brainstem tumour with no cure.

His prognosis was described to us as ‘dismal’. Our little boy, who only weeks earlier had walked through the school gates with his whole life stretching ahead of him, was going to die.

The night after, Billy was lying in our bed talking about Ghostbusters. He said: ‘Mummy, I can’t wait to grow up!’

I matched his enthusiasm, kissed him and tucked him in. Then I walked out of the room and silently wept, gripping the bannister tightly so I wouldn’t collapse.

Billy didn’t know he was dying. It was the most heartbreaking secret we’ve ever had to keep.

I want to be careful about what I say next. This isn’t about claiming somebody could have magically saved him. DIPG killed Billy. It is a devastating paediatric cancer for which there is no truly effective treatment.

But accepting that Billy couldn’t be cured does not mean accepting that everything about his care couldn’t have been better.

Looking back, the shortcomings surrounding his care, especially in his final hours, poured trauma on top of trauma.

Within days of his diagnosis, Billy underwent a biopsy in the hope that understanding the genetic make-up of his tumour might open doors to experimental treatments. We were told he was theoretically eligible for an immunotherapy trial at Great Ormond Street Hospital. We were warned how hard it would be to get on the trial and how physically and mentally gruelling it would be.

But as we were scrambling to find the right way forward, his tumour was already growing.

Two weeks later Billy began the first of 13 sessions of intense radiotherapy – the only treatment offered for DIPG on the NHS. It exists just to buy time.

Billy dressed as Iron Man for the fitting of the mask that would hold his head completely still while the radiation was delivered. They placed a warm sheet of thermoplastic over his little face, covering his eyes, nose and mouth, and secured it to the bed while it hardened into his exact shape.

Radiotherapy was scary. Each day he was left in a room, bolted to a plinth so he didn’t move, with a huge machine whirring over his head.

He wore his little Christmas jumpers, or his beloved gingerbread man costume, and I read books from his Mr Men advent calendar to him over the tannoy.

He was terrified but did his best to smile. He’d adopted this mantra: ‘I am brave, I am strong, I can do scary things.’ And we said it together, often.

He was nicknamed Billy The Brave. Although he once told me, his bottom lip trembling, ‘I’m not brave, Mummy, cos I sometimes cry.’

Since Billy’s treatment, questions have been raised about whether delivering radiotherapy so intensively is the right approach for children, and I believe it was too much for our little boy.

He experienced intense head pain after the first session – he screamed and began vomiting.

Jamie and I enlisted friends and family to desperately try to work out a plan to save him. We contacted DIPG specialists and hospitals from around the world.

We chased hope wherever we could find it.

We discovered trials that combined radiotherapy with other drugs, only to find Billy was automatically excluded because he had already completed his treatment. We weren’t given options. We were told there weren’t any.

As the weeks wore on, I became increasingly frustrated. It seemed as though world-leading doctors specialising in DIPG in other countries were more accessible, more responsive and, frankly, more hopeful than our NHS team.

I don’t know whether any of those options would have changed Billy’s outcome.

But I do question why parents of a newly diagnosed child should have to spend the precious time they have left trawling the internet, contacting specialists around the world and trying to navigate clinical trials themselves. Surely there should be an easier way?

Billy’s symptoms outpaced the entire process of getting what little treatment there was available. He didn’t make the trial at Great Ormond Street Hospital.

‘The worst of the worst,’ our consultant explained. ‘Dealing with his tumour mutation is like trying to hold back a tsunami.’ We were told time was running out, but a drug called ONC201 had become available from the US on compassionate grounds. It might buy us a little time.

But by the time it arrived from America, Billy had lost the use of his legs. He’d experienced blindness and double vision. He’d lost the use of an arm. He was in such a bad way that we could not justify giving it to him, only to prolong his suffering. I was furious.

‘Why wouldn’t they listen to me weeks back, when I begged them to get plan B in place?’ I wrote on Instagram, where I’d been posting about Billy’s journey. ‘Why hadn’t this drug been ordered before?’

And all the while, Billy was changing. He was suffering with little to no respite. The steroids he was on to control the tumour’s swelling caused terrible side-effects, and they began taking their toll on our little boy. He became excessively bloated and uncomfortable. He was almost completely unrecognisable.

Just before Christmas, an attempt to reduce his steroids was followed by such rapid deterioration we were blue-lighted to St George’s Hospital in south London. Doctors talked about the possibility of a brain shunt, suspecting excess fluid and pressure within the brain.

Billy’s days and nights were impossibly hard. But underneath the tumour, the steroids, the anxiety, the perpetual hunger and the desperate need to feel better, he was still a normal little boy.

When one side of his body became weaker, he played Mario on his Nintendo one-handed. He made us laugh, even when he could barely speak. He worried about his sister. He wanted to go back to school. He missed his friends.

We tried so hard to give him pieces of his old life, but the tumour took more and more of it away. By the end of March, we knew we were losing him.

We had boxes of end-of-life medication and equipment in our house. They had arrived weeks earlier, and I hated looking at them. They were there for the moment when hope finally ran out. The end.

It came on Saturday, March 30. Billy woke up early, as he always did, and we carried him downstairs. By now he was mostly paralysed. He still had the use of one hand, but he couldn’t walk, turn over in bed or sit up himself.

He had some breakfast and was eating a bowl of broken-up chocolate from an Easter egg hunt the day before. He took his morning tablets. He was always so proud of how many he could swallow at once. But that morning, he threw them up.

By lunchtime he was struggling to swallow, and we couldn’t administer the steroids he so desperately needed to stay alive. We carried him to bed early that night. He was insistent on sleeping in his own bedroom, listening to Queen songs, so we put a mattress next to his bed so I could sleep beside him.

I lay there watching him, but he began to vomit. Billy could no longer speak, but managed to give us one last thumbs-up to tell us he’d stopped vomiting so we could lay him back down to sleep.

It wasn’t until the shock wore off days later that I realised I didn’t remember his last words.

His eyes closed for the last time, and I guess that’s when he left us, and slipped into a coma.

He was still alive, but he was gone.

We carried him downstairs so we could be with him. His suffering visibly continued throughout the night. We called the hospice, begging for help.

A nurse arrived. She was unable to administer the drugs Billy needed without a second colleague, and had to video-call the hospital for approval. She told us she did not believe Billy was at the end of his life. She then told us the pain medication Billy needed wasn’t in the locked boxes that had been left in our home for exactly this moment.

She left to retrieve the ‘missing items’, returning hours later to give Billy the medicine. And then she left again, promising to return first thing in the morning.

We felt abandoned.

The hours that followed were brutal. There are things that happened that I refuse to put into words, because they are too horrifying, too personal. The dying process, with no adequate medication, was traumatic. Billy had to fight to find peace.

The hospice nurse finally arrived at 10.50am, just 20 minutes before Billy died. When she saw him, she announced loudly: ‘The situation’s changed. He’s dying.’

She left for the kitchen to get something from her medical bag. Her colleague was there, and they shared a joke – we could hear them laughing from the living room.

I whispered to Billy that he could rest and that everything was OK. I told him that he was so brave, the bravest, and so loved, but that he could sleep now, and not worry about a thing. I felt his breathing stop. My hand was on his chest when his little heart became still.

Billy died at 11.10am on March 31. Just 15 days away from his fifth birthday. Those final hours left us with questions that no complaint response has ever made up for, but I can only hope that, at the end, all Billy could feel was his Mummy and Daddy’s love.

When your child dies, your world shatters. The following night, sobbing, I called the symptoms team, wondering if they’d still take a call, knowing our child was dead. I wanted somebody to explain how our son’s final hours unfolded the way they did. ‘Was this right?’ I begged. ‘Should this have happened the way it did?’ I was told briskly: ‘I can’t answer that. I was not working last night.’ Case closed.

More than anything, I wanted somebody to reassure me that Billy had received everything he needed, but they couldn’t.

We can’t change Billy’s story. And so I write this not with an axe to grind, but in the hope these words can change another person’s experience. Because, for now at least, another family is going to receive this diagnosis. Another family will have to face the unimaginable reality that their child is going to die.

After Billy’s death we founded Billy’s Battalion, dedicated to raising awareness of DIPG, to fund research, treatments and one day a cure. A legacy in his name. Something good in the bad. We have been a registered charity for just over a year and have raised £140,000, and, since Billy’s death, another £85,000 for Abbie’s Army, the UK’s leading DIPG charity.

I support Brain Cancer Justice and have taken Billy’s story to Parliament, joining other families and campaigners to lobby MPs for greater investment in childhood brain tumour research and better access to clinical trials.

I’m also working alongside other bereaved parents and campaigners, including those behind Hugh’s Law, to push for better support for families facing serious childhood illness and better care when a child reaches the end of their life.

Billy never got the chance to get better. His miracle did not come.

After he died, I wrote something that still stands true: ‘And now I will fight for little ones like you. Because I’m not sure what else I am supposed to do if I can’t do that.’

Visit billysbattalion.org or donate via Just Giving. Follow Ellie on Instagram at @ellielexie, and the charity at @billysbattalion