Transcript generated from the episode’s audio. Speaker names are identified from the context of the conversation rather than from recorded speaker data, and automatic transcription may misspell names and terminology. Please refer to the video for the authoritative version.

David Raubach: Hi, my name is David Raubach and I want to thank you for joining us today on today’s episode of the Cancer Project podcast. We’re very privileged to be able to talk to Abby and Hattie. Abby is the mom of a patient that was treated for a pediatric cancer 10 years ago at the Oklahoma Proton Center, and Hattie is his very sweet older sister. So, we’re really looking forward to talking to them and hearing a little bit more about the journey that they went through with their son and brother being diagnosed with cancer. I want to thank you guys so much for joining us. So, why don’t you tell me your name, where you live, and how old you are.

Hattie: So, my name’s Hattie Burton. I live in Devon in the United Kingdom and I’m 13 years old.

David Raubach: Okay. And do you want to introduce your mom?

Hattie: And this is my mom, Abby. And she lives with me in Devon. Yeah.

David Raubach: Okay. Perfect. So, Hattie, is this your first time on a podcast?

Hattie: Yes, it is.

David Raubach: Well, I think it’s going to be great and we’re looking forward to talking to you and talking to your mom. So, tell us a little bit. This is, is this your first time in Oklahoma since you were here as a three-year-old 10 years ago?

Hattie: Yeah.

David Raubach: So, what’s it been like? I think you got in on Sunday, so that would be two days ago, correct?

Hattie: Yeah.

David Raubach: So, what’s it been like being here for the first time where you can remember being here?

Hattie: It’s been a lot hotter than I thought it was going to be. But it’s just like I can relive the memories that I can’t really remember, but like I have not like flashbacks, but I remember some of the roads and like it’s just really special to be back and to thank everybody that helped my family.

David Raubach: And so, what was it like, because you had the opportunity to visit the proton therapy center in Oklahoma City where your brother was treated 10 years ago. What was it like walking into the proton center today?

Hattie: It was just like seeing everybody that helped my brother. Just like it just made me feel like how lucky I am that we’ve got my whole family and we’re all happy and healthy, and like it just made me feel just overjoyed. And like everybody there is so nice. Like it’s incredible. Like they’re just amazing people.

David Raubach: So, what is something else that you’re really looking forward to doing while you’re here in Oklahoma? Now, your brother said going to Whataburger and Raising Cane’s, so you can’t say those. He already said that. So, what are some other things that you’re really looking forward to?

Hattie: I’m really looking forward to going to Frontier City again. And going back to the For the Love of Horses. Ever since I went there, when I was doing the activities while my brother was being treated, ever since I went to For the Love of Horses, my love of horses is like, oh, it’s just, yeah, I’m going back and I’m just going to be like, this is what has started my equestrian journey. And I love horses. Horses are my world and they have been since I’ve been here. So, I’m really looking forward to going back to For the Love of Horses for another ride.

David Raubach: So, do you get to ride in England?

Hattie: I do get to ride in England. I’m regularly ride like the weekends. So, yeah.

David Raubach: What type of riding do you do?

Hattie: I like to show jump.

David Raubach: So, okay. So, you are actually you’re doing jumping then?

Hattie: Yeah.

David Raubach: Oh, that’s amazing. Yeah, I did. If I’m on a horse and it even starts galloping, I’m like, “Please stop. Get me off. I don’t know what’s happening here.” So, that’s amazing. What, now, do you have your own horse?

Hattie: I don’t have my own horse. No, I ride over in where I ride in Devon, and they have four horses there at a livery yard where they use them for the riding for the disabled. And at weekends they like loan them out to people for riding lessons with a riding instructor. So maybe that’s like a 16th birthday, Mom. I’d like a horse.

David Raubach: There you go.

Hattie: That’s, we have, she did say she would get me one, but it’s not happened yet.

David Raubach: There, there we go. Hey, speak it into existence here on this podcast for all the world to hear.

Hattie: Yeah.

David Raubach: So, tell me what you like most about your mom.

Hattie: She’s my rock. I love her so much. Yeah.

David Raubach: I know. We promised we weren’t going to cry today, but so, what do you enjoy doing with your mom?

Hattie: Sitting at home just with her, going to bed, reading with her.

David Raubach: Yeah, you guys are going to make me cry. That’s incredibly sweet. So, what, and Abby, what are you most proud of about Hattie?

Abby: Whoa, that’s a tough question. Let me just wipe one tear. She is the most beautiful girl and the most amazing sister to Leo. We’re very proud of her. There’s a funny story that I will tell you. Obviously we had to drag her across to America with Leo. She was really into Frozen at that time. And we have this amazing memory of Hattie walking down the neighborhood where we stayed in Edmond in her Frozen tutu swimming costume and her Frozen towel. And yeah, she took it all in her stride, you know. She didn’t really understand what was going on, but she was there every step of the way. And yeah, we’re very proud of you. All that you’ve achieved in your life already. Riding horses, singing, acting, playing cricket like your brother. Yeah, she’s amazing.

David Raubach: Yeah, that’s amazing. And what a great older sister for Leo, too. That’s wonderful. So, I’m going to ask you a little bit of a tough question. But it’s a reality for parents that have one child that’s going through a serious medical condition that requires multiple doctor’s visits. For you guys, it required literally leaving the country to seek treatment. What was your mindset, or how did you approach continuing to be a mom to Hattie while also managing everything that was going on with Leo and his cancer treatments?

Abby: I suppose inclusion is the word I would use. So, James has previously said on the former podcast recording that we have an amazing family. We have an amazing network of friends. And from the word go, they were there for us. Hattie was in a Montessori child minder setting, and Jenny, she offered a free day of childcare for Hattie. And it was a beautiful home, beautiful, relaxed setting. So, we knew that she was going to be well looked after by Jenny. And then family and friends would step in. But equally, Leo was so young and I was still breastfeeding him. I was on maternity leave when he was diagnosed. So I had to be there to feed him when he could take food. But when I didn’t need to be there, family would come to the hospital to sit with him, and then I could go out with Hattie and do fun things.

Abby: So, James’s sister, brother, my brother, my best friend Hannah, family, we, they’d all take it in turns to sit with Leo when we needed to spend time with Hattie. And we did some fun things. And you know, when we were in Bristol, it’s about an hour and a half drive from our home, the big children’s hospital in England, James would bring her up and he’d maybe sit with Leo, and then I’d go out with Hattie and we’d go and play outside and do things. So, but equally the hospitals would embrace Hattie. There would be a playroom that she could come to. When we were at the children’s hospital in Oklahoma, Hattie dressed up as a nurse, and Leo’s and Hattie’s favorite nurse there, Emily. Nurse Hattie would come along with her outfit. So, it was very much about inclusion, and still being present as much as we could with Hattie, but with the amazing support of family and friends along the way.

David Raubach: What was something that maybe you wish you would have thought of at the time, looking back? And I ask that question partially from the perspective of, as we talked about, there’s other families that are maybe just now approaching this. What are some things that maybe you wish you would have done a little bit different, or taken time for, or thought about, or been aware of that would be an encouragement for somebody who’s just now facing something like this?

Abby: It’s hard to think about what we’d do differently. I know that we valued reaching out to people who had gone through the same. So, and we offered the same. So when we were nearing the end of our journey in Oklahoma, there was another young girl from Devon who was just about to embark on her proton beam radiotherapy. So we reached out to them. So I think just not being afraid to ask for that support from other people who’ve gone through that same or similar situation. I possibly wish I’d written more of a journal. I did keep a diary, like of hospital appointments and when he had chemo and when he had an MRI, and that sort of thing, but possibly to write more of a journal. Might may have been more sort of therapeutic for myself.

Abby: But yeah, we live our memories through our own memories, but photos and things, and yeah, that’s been amazing to sort of look back on over the years as we’ve sort of talked about things with Hattie, with Leo, with other people. And we always planned to come back. We didn’t want to leave. We loved Oklahoma so much. We love that we were absolutely embraced by the community in Edmond and ProCure. It felt like an extension of our family. So, we’ve always, from the moment we flew home on Leo’s first birthday, we always knew we’d be back. But we wanted to come back when he was old enough to remember it himself for years to come. So, 10 years felt like the right time.

David Raubach: Yeah. What was it like today walking into the Proton Center? What were the, what were those emotions for you?

Abby: I had to take a few deep breaths. When we got, we’ve driven past it a few times since we’ve been back over the last few days. But when we parked up, it was like, “Okay, deep breaths.” And I held his hand tightly. And James did the same on the other side. And there were a few tears behind my sunglasses. But walking into that room, honestly, that foyer, it was like we were there 10 years ago. The smiles, the warm welcome, the smell, just everything was the same. Apart from the bell, the bell moved. I was like, we did the bell. The bell did move. Where’s the bell?

Abby: A lot of the furniture is the same. Decor is the same. Yeah. The big brown chairs. We, in the big brown chair. I mean, he’s obviously grown since then, but he was this weeny little boy on the big brown chair. But no, it was heartwarming, I think, was a word Leo used. And it was really heartwarming to be back today.

David Raubach: What, did you get a chance to walk back to the back of the facility?

Abby: Yes.

David Raubach: So, and when you were here before, so for those of you that are watching the podcast and maybe aren’t familiar with the layout of the center, there’s the lobby, and then we’ve got, you come in the front door and there’s the check-in desk, and then there’s the waiting area for patients. Then you actually go back through a double glass door into the back, and that takes you back to a treatment corridor. And on that treatment corridor are four treatment rooms. And I believe he was treated in what we refer to as treatment room four, which is the gantry room.

David Raubach: What was it like going back to the back then and seeing the room where we would do the sedation, because we did have to put Leo to sleep each day for treatment? So, seeing that room and then going back ultimately to the treatment room. Yeah. Was it the same emotions, different emotions?

Abby: Very similar emotions. Obviously, I didn’t have to hand him over today. He was stood by me all the time, but again, all the staff were amazing and they’re so welcoming. Some of the staff weren’t there 10 years ago, but they heard that we were coming and they were like, “Oh my goodness, we can’t believe your story and can’t believe you’ve come back, and why have you come back?” And we were like, to say thank you, and to also show you how Leo is 10 years on, and to give hope to other people and inspire other people, and, but ultimately, to be, to say a massive thank you, not just for the treatment but for the love and the warmth and the kindness that you showed to us as a family.

Abby: So, yeah, that there was like a little room that we’d go in that the bed isn’t there anymore, but he would sit on a little bed and get sort of hooked up and wired up and smile. He never stopped smiling. Still hasn’t stopped smiling. And then I would have to say goodbye, and then the nurses would take him through to treatment room four. And the two nurses that we saw today who were on his team said they would always argue over him.

David Raubach: Yeah.

Abby: They’d say, “Well, no, it’s my turn today. I want to take him.” And then, I think his treatment was only for a few minutes. He’d have one beam. I found out today that his beam actually went through his bottom. I always thought it would go through his tummy because he’s got three little tiny tattoos on his tummy.

David Raubach: Okay.

Abby: But it was obviously where they lined him up.

David Raubach: Mhm.

Abby: But that was something that I learned new today. And then they’d take it in turns to sort of bring him back through to the foyer after his treatment. His treatment was very early in the morning. He was one of the first because he wasn’t allowed to eat or drink because he had to be put to sleep. So we were there at, I don’t know, 7 in the morning every day for six weeks. And then they’d give him back to me and we’d sit and chat, and to Ron, chat to the nurses, and then go, “Oh, I suppose we better get home now for Hattie,” who was being looked after by grandparents, and James’s sister also came over for the last two weeks. They sort of all took it in turns to look after Hattie while we were there.

Abby: So yeah, it was absolutely amazing. I remember one nurse, I think she was called Janet, and she walked out into the foyer, and she said, “Forgive me if I put on a really bad accent,” but she said, “Oh, Abby, your little boy, he just was sent from heaven,” that you would have been mistaken for somebody from Oklahoma with that accent. That was perfect. But that sums him up. And we actually lost James’s mom when I was pregnant with Leo to cancer. And when he was born, he looked like Pat. He had mannerisms of Pat. And when Janet said that, I was like, “Oh, wow, that goes full circle, what you’ve just said.” Yeah.

David Raubach: What were some of the things that got you through that long process? Because it really, I mean, you’ve talked about being in Oklahoma, which, and how many treatments did Leo receive in Oklahoma? Do you remember?

Abby: It was six weeks of treatment. So about 30 treatments, yeah, I think. Yeah.

David Raubach: So, every day Monday to Friday, first thing in the morning, he’s going through treatment. That process takes an hour, hour and a half, start to finish with the sedation and the recovery. But the whole cycle of treatment, from diagnosis all the way through the end, because Leo had to have chemotherapy and surgery along with radiation, and obviously a lot of other procedures that come along with having your bladder removed, that whole process. You talked about family supporting you through it, and that helped you as a mom get through that process. What were some other things that were important for you, or some other things that you did that just helped you survive or persevere everything that was happening?

Abby: I think at the time you don’t really think about yourself. You just have no choice but to do what you do every day. I remember friends saying before we came to Oklahoma, like, “I don’t know how you do it. You’re like, you’re just so happy and you’re doing it.” And believe me, behind closed doors there were some dark moments and lots of tears. But you just do what you have to do. You dig deep. What you read out today about Princess Katherine was very true. It was afterwards that it really hit me, and I needed to have some emotional, psychological support afterwards. And I would say don’t be afraid to seek that help afterwards, because at the time you just are on this roller coaster and you have no choice.

Abby: You just, you know, you have to go in for chemo. You have to have a scan. You have, you just have to do it, and you have to trust the doctors and trust the science and trust the evidence. And we, boy, we were so grateful for that. You know, international conversations were happening at the time for the protocol of chemotherapy. They were liaising with doctors all across the world because it was so rare in somebody his age. So you just have to trust the process, but accept help. Don’t be afraid to ask for help. But for me, it was after it all finished. We were back in England. So he had nine cycles of chemotherapy, February, March, April, and then they took the bladder out in the May.

Abby: And then I think it was a matter of weeks before we knew we had to have the proton beam radiotherapy. So that’s when, yeah, we were all hands on deck getting passports, and you know, everyone was just helping do whatever they could. But I think my advice for anyone on this journey, be it the patient themselves or family members, is to not be afraid to seek talking therapy or counseling or whatever it might be afterwards. And that’s exactly what Princess Kate said recently: it doesn’t stop when the treatment stops. It’s an ongoing journey, and that was really lovely to hear about.

Abby: The proton, was it the Hope Afterwards, you know, the sort of charity, the golf day and things that are being arranged afterwards, you know, to continue that support for people, patients and family, from a wider circle, yeah. I think that’s really important.

David Raubach: Well, and I like what you talked about there, which is really this concept of survivorship, which is what happens once all the treatments are done. And we talked about, at the lunch, the graduation lunch today, we read the quote, and I understand that I’m supposed to refer to her properly as Princess Catherine, not Princess Kate. We can be too colloquial here, I guess, in the United States. But Princess Catherine, who went through cancer treatment, talked about, for her, the hardest part actually was when treatment ended, because her life had been so defined by going through treatment for such a period of time, and that became who she was. And then when treatment ended, everything was supposed to go back to normal, but it doesn’t really go back to normal, because one, you can never unlive the fact that you’ve gone through this experience.

David Raubach: Two, there’s probably a lot of follow-up appointments and things that come along with having gone through that arduous treatment. And then three, for people that haven’t gone through something like cancer, they don’t understand what you’re dealing with. It’s not necessarily like, well, I had a cold and now the cold’s gone and everything’s back to normal, right? It’s different than that. So, maybe talk a little bit about those first few months back in England. The treatments themselves are done, but there’s still a lot to process mentally, and obviously still doctor’s appointments, too. What were those first few months like?

Abby: So we flew back on Leo’s first birthday. And then he still had one cycle of chemotherapy to finish. So he officially finished treatment, I think it was something like the 17th or the 19th of September. And then we had three months of waiting for the first scan. And that was an emotional day. So in England we have Fireworks Night on the 5th of November, and there’s bonfires and fireworks, and we got the first clear scan on the 5th of November.

David Raubach: Wow.

Abby: So everywhere there’s fireworks going off and bonfires. So, that’s a really poignant day. It’s also the day my dad’s mom passed away.

David Raubach: Okay.

Abby: Years before. So he always lets off a big rocket, to remember lovely Flo. So that will always be an amazing day for us.

Abby: And then, yeah, he had regular scans for five years, regular chest X-rays for five years. We see the surgeon in Bristol every two years. And James said when they stop scanning you, you have this, you have scan anxiety.

David Raubach: Okay.

Abby: When you have a scan, but then you have no scan anxiety, because you want the scan to keep telling you that everything’s fine, but again, you have to trust the process. And then, you know, he was wanting to go to nursery. He went to the same childminder’s as Hattie, he had been to Jenny’s. And he was fine. He was ready to go and be with friends and do what a normal 18-month-old boy wanted to do. I was the one that suffered from separation anxiety.

Abby: But you know, time’s a healer. And I remember his social worker in England, Heather. She was just amazing. And she said, time softens the edges. And I think that’s a lovely quote to remember. You know, there’ll always be memories, some good, not so, some not so good. But time does soften the edges of the hard ones.

David Raubach: Time softens the edges. Yeah, that’s beautiful. Do you think that there’s a little bit of, I don’t know if closure is the right word, but just some completion, or coming back here again since you haven’t been back here in 10 years?

Abby: Yeah, absolutely. Lots of people were almost worried for us to be coming back. Like, “Oh my goodness, that’s going to be quite triggering. That’s going to be very emotional.” And yeah, there’s been tears today, but it’s been cathartic. It’s been therapeutic to plan this return journey and visit to Oklahoma. And I’m really pleased we’re here. I’m really pleased we’ve done it. We always said we would. And yeah, it’s joyful, and part of the healing process, I think, for me, as his mom. Dad, James, I’m really pleased we’ve done it. Yeah.

David Raubach: Good. Well, and I hope that just being able to walk into the Proton Center and see a few familiar faces, but then also see that what we’re doing today looks and feels a lot like what was happening 10 years ago. We’re continuing that mission, and the mission that we had when Leo came. And for the patients that finish treatment today, we still have the same goals for them, and we know that they have a long journey in front of themselves as well. So, I hope that that was a little bit encouraging, to be able to come to the graduation lunch.

Abby: Absolutely. Like we said to Leo, you are going to be such a crutch to those patients today. You know, some are still on their journey, but he will be inspiring. And I learned today that obviously you’re not treating as many children as you did 10 years ago, and certainly not from England, but whatever age you have a cancer diagnosis, I hope these podcasts, and Leo today visiting it, will be an inspiration to others.

David Raubach: Yeah, and I think we’re fortunate. We don’t treat as many kids at our facility because there’s actually more access to proton therapy in other parts of the world. And we’ve talked about the fact that there’s a few facilities that have opened in England, and actually, since you were here 10 years ago, the University of Oklahoma opened a single-room proton therapy facility. And so that’s even more convenient for patients, because the children’s hospital’s right there. And so actually a lot of the kids now, so we do still treat pediatric patients here in Oklahoma with protons, that’s the standard of care, but a lot of those kids actually now get treated at OU.

David Raubach: But we have a great partnership with them. And so if they, it’s nice to have two proton centers, so if they ever have any issues with their equipment not working, or for whatever reason they’re full, and we do still treat kids. We actually have a seven-year-old that we’re treating right now for a brain tumor. So, but yeah, we’re fortunate that now, today versus 10 years ago, there’s just a lot more local access to proton therapy.

David Raubach: Hattie, going back to you, how have you described this trip to your friends? So, I’m sure when you were leaving and going to be gone for two weeks, they were like, “Well, why are you going to Oklahoma?” How did you describe why you were coming over here?

Hattie: A lot of people were like, “Oh my gosh, you’re so lucky.” Like, you’ve gone home before, why are you going back? And I just explained it again. And they’ve really, like, they’ve realized that it’s not just because it’s just a random holiday that we’ve just decided to go halfway across the world to, instead of going closer. They’ve really been taken aback as well. There, just like how lucky they are to see Leo today, and how, like, other people aren’t as lucky.

David Raubach: Yeah, it’s a really sad reality of pediatric cancers that not every outcome is as positive as we are very fortunate to see with Leo. I think James talked a little bit about that when we talked to him just a bit ago, that you guys were at that pediatric hospital and there was just a variety of different diagnoses and prognoses, and some patients had good outcomes and some patients had difficult outcomes, and that’s it. It’s just such a tragic, sad reality that we have to go through, seeing kids get diagnosed with cancer. And we obviously, it’s our responsibility to continue, in the oncology community, to continue to look for ways to improve treatments, improve outcomes, try to reduce side effects for patients that are going through treatment.

David Raubach: So, what are you, Hattie, most looking forward to when you get back to England? So, I guess it’s probably going to be about time to go back to school, right?

Hattie: We’ve just started our holiday. Because in the UK, they’re state and private. So the state schools are still at school.

David Raubach: Okay.

Hattie: And private are off. So I’m going to be going back to UK with our summer vacation, which is our summer, like, holidays. So I’ll just be, I’m not ready to go back. I don’t want to go back. I want to move here. I don’t want to go back to UK. If I’m looking forward to anything, probably seeing my mates and riding a horse.

David Raubach: Yeah. Well, we have lots of horses here in Oklahoma, too. So, you’re welcome to stay here for as long as you want. We’ll find some really fun horses. We can even go to the racetracks. We have a racetrack here in Oklahoma City.

Hattie: Yeah.

David Raubach: What, so, for you, Abby, what do you hope that the future holds? I think for your kids, and just for you guys as a family, again, knowing the experience that you’ve gone through, and there’s a component of, well, we need to remember this and come here and revisit some of these what can be wounds that are opening back up, but then also moving on from that. How do you hope that the next few years play out for your family?

Abby: I just hope that the kids are happy and healthy and embrace all the opportunities that they want to grasp. They are good kids. Yes, they bicker like most kids, but they do love each other. Deep down you have a big fondness for one another. So yeah, we just want them to be happy, polite, young people, and to follow their dreams, inspire other people, continue to give hope, you know. It’s a big thing that we’ve gone through as a family, Leo in particular, but Hattie as his older sister as well, you know. Just, I think, just to live life to the full, you know, one day at a time, but live life to the full.

David Raubach: And what are you most looking forward to doing in Oklahoma City for the next two weeks? We’ve asked the kids, so I feel like I do have to ask you.

Abby: Well, I won’t be going on any roller coasters.

David Raubach: Okay. So, not at Frontier City?

Hattie: Yes, she will. She will.

Abby: Because I’m not very good at things like that.

David Raubach: You may have to revisit in two weeks and see if you made it on a roller coaster.

Abby: To see them having fun, to relive some memories. And the friends that we made in Edmond, Terry and Ryan, Terry’s mom Beverly, and her dad Kevin. And they’re two beautiful boys. Mason, who’s a year older than Hattie, who’s now 6 foot tall. So they became friends when we were here last. And then they’ve had a little boy since, called Maddox. So we briefly met them on Sunday night. We were so excited to see them. And we were like, “We can’t be 15 minutes down the road from you. We need to see you now.” But we’re going to see them at the weekend for a yard party.

David Raubach: Yard party.

Abby: Yeah, a yard party could mean so many different things, but I promise it’ll be fun and probably hot. So, but yeah, I think to see Hattie ride again with Carmen at the For the Love of Horses. And yeah, we’ve already been to the baseball match. So just doing some fun things and making more memories that we can look back on.

David Raubach: Yeah.

Abby: In years to come.

David Raubach: Well, I just want to thank both of you guys for taking the time to talk to us. Abby and Hattie, just an incredible story, so touching. You’re an amazing big sister to Leo. And you did a great job today on the podcast. I know you said you were nervous, but you did a fantastic job. And thank you, mom, for again just being so vulnerable and transparent, and being willing to talk about some really tough things that you guys went through as a family, and you personally. And just thank you for sharing your story with us. Thank you so much.