What my daughter taught me about preparing children for treatment

In November 2011, our 13 year old daughter was diagnosed with Ewing’s sarcoma.

I’m glad to say she’s now grown up and cancer-free, and our family will always be grateful to the people who treated her. But in the years since, I’ve found myself coming back again and again to something that went wrong during those months. It had nothing to do with the medicine and everything to do with how she experienced it – whilst the clinicians were focusing on the treatment nobody thought to explain to my daughter what was going to happen.

4,000 miles with no map

Proton beam therapy wasn’t available in the UK back then, so the NHS sent eligible patients abroad for it. That’s how we found ourselves travelling 4,000 miles to Florida, with very little idea what the process would involve, what was happening at each stage or what the outcome might be.

As her parents, we were doing our best to keep up. For my daughter, it was much harder. She resisted treatments because nobody had explained what they were for, and every new hospital environment frightened her because she had no way of knowing what was coming next. She was 13, a long way from home, and she felt scared and alone.

What I didn’t expect was how long that feeling would last. Even now, she’s reluctant to engage with health services, and of everything that happened, that’s the part that stays with me most. The way a child experiences treatment doesn’t stay in the hospital. It shapes how they feel about healthcare for years afterwards, often long after the illness itself has gone.

A lot has changed since then, and much of it for the better. In the UK, The Christie opened the NHS’s first proton beam therapy centre in December 2018, and a second opened at UCLH in London in December 2021, so UK families no longer have to cross an ocean or a continent for this treatment. But the problem my daughter faced was never really about distance. A child can feel just as lost in a hospital ten minutes from home if nobody takes the time to help them understand what’s going on.

What the evidence says

When I began looking into this properly, I was struck by how long clinicians had been studying it, and how clear the findings were.

In a study published in 2008, researchers at the University Children’s Hospital of Zurich compared children having radiotherapy with and without a preparation programme. Nurses talked families through what would happen, explained and practised the procedure with each child at their own level, and used picture books, toys and a bead for every session completed. Without that support, 21.4% of radiotherapy courses needed anaesthesia. With it, the figure fell to 8.9%, and costs fell by 36%.

Closer to home, an audit published in 2002 by a UK regional radiotherapy centre found something similar in children aged two to five. With a play preparation programme in place, those very young children only needed sedation on about one in ten treatment days, and none of them needed a general anaesthetic.

Proton Therapy asks an enormous amount of a child. Treatment often runs every day for weeks, and each session means keeping completely still, alone in the room beside a large, unfamiliar machine. When a young child can’t manage that, the usual answer is sedation or a general anaesthetic, sometimes for every single session.

So we know preparation works. The difficulty is reaching every child who needs it. The Zurich programme relied on specially trained nurses spending between five and seven and a half hours with each child, and plenty of hospitals simply don’t have that kind of time or staffing. Even where they do, most of the support happens inside the hospital, while the questions and worries tend to start at  home, often before the treatment commences.

Why technology, and why play

That gap is the reason I co-founded Pop-able. I wanted to take what play specialists and radiographers already know works, and put it in a form children could use wherever they are, at their own pace, and as many times as they need to.

A few things have held true for me ever since.

Children learn by doing. You can tell a child to keep still, but it’s a very different thing to let them practise it again and again in a game where holding still is how you win.

The explanation has to fit the child. What reassures a six-year-old won’t land with a teenager, and getting the tone wrong can leave a child more confused, or more worried, than when they started.

And parents need help too. When your child is frightened, you’re the person they look to, and it’s very hard to reassure anyone about something you don’t understand yourself. I learned that sitting in a hospital a very long way from home.

Working with Leo Cancer Care

When Leo Cancer Care first contacted us back in 2021 we realised that we were both trying to solve the same problem – us by using gamified education and Leo by building hardware that inherently made children feel more at ease.

Leo asked us to make two things.

The first was an interactive storybook built around Marie, Leo’s upright treatment system. With Marie, patients are seated and slowly rotated in front of a fixed beam, face to face with the team treating them. That’s unfamiliar to most adults, let alone a child. The storybook shows Marie as it really is and lets children examine it and see how it works, wherever they happen to be, before they ever set foot in the treatment room.

The second was Statue Quest, a game in which children guide Leo the Lion on an adventure through the jungle. Along the way he has to stop to avoid obstacles, collect pieces of a statue and strike poses, which the player then copies and holds. Keeping still becomes part of the fun rather than something to be endured. As they play, children also unlock short facts about radiotherapy, so the idea of treatment already feels a little more familiar by the time they walk through the door.

Between them, the storybook helps a child understand what’s going to happen, and the game gives them a chance to practise their part in it. That pairing of explanation and rehearsal is what the research keeps pointing to.

Now, in partnership with Leo, we’re embarking on a much wider body of work that will provide more storybooks, more games and some other exciting new features – all designed to reduce anxiety for paediatric patients about to embark on a course of proton therapy.

What I appreciate most about our relationship is that Leo started thinking about how children would experience treatment long before their first patients were treated. It was part of the plan from the start, rather than something added on later.

What I’ve learned

A frightened child is a clinical problem as well as an emotional one. Fear can mean more sedation, longer appointments and procedures that need repeating, and the cost of that falls on families as well as health services.

Technology works best alongside people, not instead of them. No app will ever replace a radiographer who knows a child’s name and takes the time to say hello. What it can do is help that child arrive having already met the machine, in a way that made sense to them.

And the worry starts long before the first appointment, so the preparation should start early too.

The problem hasn’t gone away. A review of the research published in 2025, covering studies from 2000 to 2023, found that nearly half of children having radiotherapy need sedation or a general anaesthetic to stay still, rising to 60% of those under three. It also found that the kinds of preparation that could help are offered inconsistently.

Leo’s More Heart campaign talks about treating the child as well as the disease. That’s what my daughter needed back in 2011, and it’s what so many children still need today.

– Written by Dom Raban, Co-founder of Pop-able and Executive Chair of Corporation Pop

Sources

• Scott L, Langton F, O’Donoghue J. Minimising the use of sedation/anaesthesia in young children receiving radiotherapy through an effective play preparation programme. European Journal of Oncology Nursing, 2002;6:15–22. Data from 1994 to 1999; children aged 2 to 5; sedation on 111 of 1,030 treatment days (10.8%); no general anaesthetics. https://pubmed.ncbi.nlm.nih.gov/12849605/
• Haeberli S et al. A psychoeducational intervention reduces the need for anesthesia during radiotherapy for young childhood cancer patients. Radiation Oncology, 2008;3:17. Anaesthesia 21.4% without intervention vs 8.9% with; costs reduced by 36%; 5 to 7.5 hours of trained nurse support per patient. https://pmc.ncbi.nlm.nih.gov/articles/PMC2430970/
• Chan SYC, Liu KCK, Ching JCF, Liu APY, Lee SWY. Pediatric radiotherapy preparation: a scoping review. Chinese Clinical Oncology, 2025;14(1):10. Published online 24 February 2025; covers literature from 2000 to 2023. Results: 46% of patients under 21 need GA or sedation for radiotherapy; 60% of those under 3; preparation strategies inconsistently applied. Note: the paper’s highlight box gives a different figure (58%), so the figures above are taken from the results section. https://cco.amegroups.org/article/view/134949/html