A Young Survivor’s Journey Back to Say Thank You and Forever Grateful
Episode Summary
Some stories begin in fear and end in gratitude so profound it defies easy description. This is one of those stories. In March 2015, James Burton and his wife were living what seemed like an ordinary life in Devon, in the southwest of England, when they noticed something troubling about their 12-month-old son, Leo: his stomach appeared slightly distended. What followed was a journey no parent could ever prepare for — a diagnosis of rhabdomyosarcoma of the bladder, an emergency transfer by ambulance to Bristol Children’s Hospital, and a cascade of devastating conversations about their baby boy’s future. Ten years later, James sat across from host David Raubach at the Oklahoma Proton Center with that same son — now a bright, curious, cricket-playing 10-year-old named Leo — and told the story of how they got there.
The standard of care in the United Kingdom at the time for Leo’s tumor type and location would have meant surgical removal of his bladder at 12 months old. The lifelong implications of that for a child who had not yet begun to grow were staggering. But Leo’s oncologist in the UK, Dr. Merle, knew of another path: proton therapy, and specifically the Oklahoma Proton Center, which had built deep expertise in treating pediatric cases like Leo’s. Because the United Kingdom did not yet have a proton center of its own, the National Health Service was funding families to travel to the United States for treatment — and at Oklahoma Proton, approximately 50 children a year were arriving from the UK alone. The Burtons, without resources or connections in America, without ever having set foot in Oklahoma, made the decision that Leo’s grandfather put simply: you have to give him every chance.
What the Burton family found when they landed in Oklahoma surprised them. They had steeled themselves for the clinical and the unfamiliar, but what met them was warmth. The staff at the Oklahoma Proton Center — clinicians and administrators alike — cared for Leo as if he were family. And the center itself had become a kind of temporary community for families from around the world who were all carrying the same impossible weight. The friendships James and his family formed with other families during that treatment period have, he says, lasted to this day. Chemotherapy had already shrunk Leo’s tumor significantly before proton therapy began; proton therapy allowed the team to target what remained with extraordinary precision — preserving the bladder entirely. Leo grew up with no surgical aftermath, no profound quality-of-life compromise. He grew up simply as a child.
For Leo, now weeks away from his 11th birthday, visiting Oklahoma City this week was something he described as “quite overwhelming.” He has heard the story of his treatment many times over the course of his life, but standing inside the building where it happened — meeting the doctors and therapists who treated him as an infant, who remembered him and had photographs of him as a baby — made it real in a way it had never been before. He already knows what he wants to do with his life: become a doctor. James closed the conversation with a message aimed directly at every family facing a diagnosis right now: do your research, ask every question, seek the best possible care wherever it lives, and trust the people caring for your child. The Oklahoma Proton Center gave Leo everything. The Burtons will be forever grateful.
What You’ll Learn in This Episode
- Diagnosis at 12 Months: Leo was diagnosed with rhabdomyosarcoma of the bladder in March 2015 at just one year old, after his parents noticed a slightly distended abdomen. The family is from Devon in the southwest of England.
- Rhabdomyosarcoma of the Bladder: A rare and aggressive soft-tissue sarcoma that, in Leo’s location and age group, would have historically required surgical removal of the bladder — a decision with profound lifelong consequences for a child who had barely begun to develop.
- The UK Had No Proton Centers: In 2015, the United Kingdom did not have a proton therapy center. As a result, the NHS was funding families to travel abroad for treatment, and the Oklahoma Proton Center was treating roughly 50 pediatric patients per year from the UK alone.
- Chemotherapy First: Before proton therapy, Leo underwent chemotherapy in the UK, which proved highly effective — significantly shrinking the tumor and setting the stage for the targeted radiation treatment that would follow in Oklahoma.
- The Decision to Travel: Facing the prospect of uprooting their young family and flying 5,000 miles to a city they had never visited, the Burtons were ultimately anchored by Leo’s grandfather, who said plainly: you have to give him every chance.
- Bladder Preservation: Proton therapy’s precision allowed Leo’s treatment team to target his tumor while sparing his bladder entirely. He has grown up with completely normal physical development — the outcome that surgery could not have offered.
- A Community of Families: The Oklahoma Proton Center became a gathering point for families from the UK and around the world, all navigating pediatric cancer simultaneously. The bonds formed during those shared months of treatment have endured for a decade.
- Staff Who Remembered: During his return visit, Leo met doctors and therapists who not only remembered treating him as an infant but had photographs of him as a baby — a testament to the depth of connection the center’s team forms with every patient.
- Ten Years of Normal: Leo plays cricket, performs in school plays, and is described by his father as healthy, vibrant, and full of life — the full childhood that bladder preservation made possible.
- A Future in Medicine: Unprompted, Leo told David Raubach that he wants to become a doctor when he grows up. He finds medicine genuinely interesting — and he certainly has a unique medical history to draw upon.
- A Message for Other Families: James Burton’s advice to parents facing a pediatric cancer diagnosis today: don’t give up, do your research, seek out the best possible care regardless of where it is, and trust the specialists who are caring for your child.
Leo Burton came to Oklahoma as a baby who could not yet speak, could not yet walk steadily, and had no way of knowing what was being done to save his life. He returned at 10 years old — nearly 11 — with a full decade of living behind him and a future he is already planning. His father James made an impossible decision in an impossible moment and chose hope. The Oklahoma Proton Center met that hope with expertise, with warmth, and with a level of care that the Burton family has spent ten years finding words for. What they came back to say, after all of it, is simply this: thank you. And that, David Raubach reflected, is what this work is for.
Full Transcript
Read Full Transcript
David Raubach: Hi, my name is David Raubach and I want to thank you for joining the Cancer Project podcast today. We’re really privileged to be able to talk to Leo who is a 10-year-old boy and a cancer survivor. He was treated for bladder cancer when he was about one year old. And then we have his dad, James, here. And it’s really an incredible story. At that point in time, 10 years ago, the United Kingdom didn’t have a proton center. And so there were many kids who were diagnosed with cancer in England or Wales or Scotland who actually came to the United States for treatment. And at the Oklahoma Proton Center, we were treating about 50 kids a year from that part of the world for a variety of different tumors. And so it’s really neat for us to see a success story and have Leo and his father James here. And so we’re really excited to talk to them today about that experience 10 years ago, but also a little bit about what it means to be back here visiting the Proton Center and visiting Oklahoma City. So James and Leo, thank you guys so much for joining us today. So Leo, tell me — remind me again, you’re 10 and you said you’ve got a birthday coming up here in a couple months.
Leo: Yeah, so my birthday is on the 3rd of November and I’ll be 11.
David Raubach: So you’ll be 11 in November. And you came over here when you were just a little over one year old. So you don’t remember anything about that experience, right?
Leo: No.
David Raubach: No, that’s right. So today we have the chance to kind of hear about it from your dad. And then we also had the opportunity to sit down with some of the staff at the Oklahoma Proton Center and relive some of that experience together. And I think one of the special things about being here this week is you actually got to meet some of the people who were involved in your care when you were a baby. Is that right?
Leo: Yeah, it’s been really cool.
David Raubach: That’s great. So James, let’s start with you. Tell me a little bit about when Leo was first diagnosed. What was that like for your family?
James: Yeah, so it was March 2015. Leo was a 12-month-old. And we had noticed that his stomach was slightly distended — slightly bloated. And we took him to our local hospital and they found a mass on his bladder. And it was devastating news. I mean, you know, your child is one year old and they tell you your child has cancer. It’s just — there are no words.
David Raubach: And this was in the UK — in England?
James: Yeah. We’re from Devon in the southwest of England. And so we were taken by ambulance to Bristol Children’s Hospital, which is the regional pediatric center for the southwest. And they confirmed the diagnosis: it was rhabdomyosarcoma of the bladder.
David Raubach: And what happened next?
James: So they started him on chemotherapy. And the chemotherapy was very effective — it shrunk the tumor significantly. But then the question became: what do we do next? And we had some really difficult conversations because the standard of care in the UK at the time for this type of tumor in this location would have been surgery to remove the bladder. And the implications of that for a 12-month-old boy — for his future quality of life — were really significant. And our oncologist in the UK, Dr. Merle, said, “You know, there’s a treatment called proton therapy, and there’s a center in Oklahoma that has a lot of experience with this type of tumor.” And she said, “Would you consider going?”
David Raubach: And what was your reaction when you heard that? When you heard that you might have to take your 12-month-old to America for treatment?
James: I mean, at first it was overwhelming. We’re a young family. We didn’t have a lot of resources. We didn’t know anybody in Oklahoma. We’d never been to Oklahoma. And the idea of uprooting our family and traveling 5,000 miles for cancer treatment for our baby — it was a lot to take in. But I remember my dad — Leo’s grandfather — he said to us, “You have to do everything you possibly can for Leo. You have to give him every chance.” And I think that really settled it for us. We were going to go.
David Raubach: So talk me through what happened when you arrived at Oklahoma Proton Center. What was that experience like?
James: It was honestly extraordinary. We got off the plane and we didn’t know what to expect. And the level of care and the level of warmth from everyone at the center — from the clinical staff to the admin staff — it was just remarkable. I mean, these people took care of Leo like he was their own child. And I think one of the things that surprised us was the community aspect. There were other families there from all over the world — from the UK, from other countries — and we all bonded together. Because we were all going through something similar. And the friendships that we made there have lasted to this day.
David Raubach: So Leo — I know you don’t remember the treatment — but you’ve heard the story. What is it like for you to come back and visit the place where you were treated?
Leo: It’s quite overwhelming actually. Because I know the story, I’ve heard it loads of times. But to actually be here and to meet the people who helped save my life — it’s quite emotional.
David Raubach: And have you met anyone here this week who was involved in your care?
Leo: Yeah, I met some of the doctors and some of the therapists. And it was really cool because they remembered me — which I found really surprising because they treat so many patients. But they remembered me and they had photos of me as a baby.
David Raubach: That’s wonderful. So James — what does it mean to be back here now, ten years later, with Leo healthy and thriving?
James: It means the world. It really does. I mean, ten years ago we were in the darkest place imaginable as a family. We were terrified. We didn’t know if Leo was going to survive. We didn’t know what his quality of life was going to be. And to be here now, ten years later, and see him as this healthy, vibrant, incredible 10-year-old — who plays cricket, who performs in school plays, who is full of life — it’s just extraordinary.
David Raubach: And I want to ask you — because one of the things that we hear a lot from families who come here is that the decision to use proton therapy rather than surgery meant that Leo could grow up with his bladder intact. Can you talk about that and what that has meant?
James: Yeah, absolutely. I mean, the fact that Leo has his bladder — that he’s had a completely normal childhood in terms of his physical development — that’s everything. I mean, if he’d had his bladder removed at 12 months old, the implications for his life would have been profound. The quality of life issues would have been significant. And instead, he’s had a completely normal childhood. And I think that’s the miracle of proton therapy in this case.
David Raubach: Leo, let me ask you — what do you want to do when you grow up?
Leo: I’d like to be a doctor actually. I find medicine really interesting.
David Raubach: You want to be a doctor? That’s fantastic. Well, you certainly have an interesting medical history to draw on.
Leo: Yeah.
David Raubach: James, any final thoughts for families who might be in the position that you were in 10 years ago — who have a child who’s been diagnosed with cancer and they’re trying to figure out what to do?
James: I think my message would be: don’t give up. Do your research. Ask the questions. Seek out the best possible care for your child, wherever that might be. And don’t be afraid to go somewhere different, somewhere unfamiliar, if that’s what gives your child the best chance. And trust — trust the people who are caring for your child, because the people we encountered at Oklahoma Proton Center gave everything they had for Leo. And we will be forever grateful.
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