Navigating Life's Racetrack: The Power of Pediatric Cancer Narratives in Healthcare

Have you ever wondered how a nine-year-old would describe battling cancer? Imagine it likened to navigating the twists and turns of a racetrack, a metaphor young Ethan uses to articulate his journey. Today, we're joined by Common Language Digital Storytelling founder Mike Lang and Clara Jordan from the Pediatric Oncology Group of Ontario, a charity that partners to achieve the best childhood cancer system for children, youth, survivors and their families in Ontario and beyond to discuss the potent role of storytelling in pediatric oncology. Experiencing firsthand the integration of patient narratives at academic conferences, like POGO's Multidisciplinary Symposium on Childhood Cancer we uncover the intricacies of bringing these powerful voices to the forefront of healthcare discussions. Together, we unravel the art of empowering patients to share their stories with authenticity, ensuring that the narrative remains their own.

The episode takes an emotional turn as we delve into the profound effects of childhood illness on families, exploring the narratives of siblings like Layya and Sara, whose life paths were significantly altered by their experiences. Their stories underscore the long-lasting resonance of such personal accounts, which continue to touch listeners and shape professional practices far beyond the moment of sharing. As Clara and I ponder over our potential digital stories, we pay homage to POGO's steadfast commitment to genuine patient and family-centered care, understanding that these narratives are pivotal in highlighting the humanity at the heart of healthcare. Listen in for an insightful session that promises to leave you with a deeper appreciation for the voices of young patients and their loved ones.

Other Links Mentioned

• Ethan’s Story - Race Track 
• Layya’s Story - Comfortable in Uncomfortable Places
• Sara’s Story - Saving Grace
• Eugene’s Story - Wherever You Are

About POGO
Pediatric Oncology Group of Ontario works to ensure that everyone affected by childhood cancer has access to the best care and support. We partner to achieve an excellent childhood cancer care system for children, youth, survivors, and their families and healthcare teams, in Ontario and beyond. POGO champions childhood cancer care, and as the collective voice of this community, is the official advisor to Ontario's Ministry of Health on children's cancer control and treatment. POGO is a non-profit organization with charitable status, here for kids with cancer, for now, for life.

About Leading Through Stories
Everyone has a story to tell—and what we do with that story can create lasting impact. Every episode, Leading Through Stories, helps unravel the how and why of digital storytelling with host Kristy Wolfe.

Life is made up of meaningful moments—which ones do you want to share?

This podcast is presented by Common Language DST, digital storytelling facilitation training for health and wellness changemakers.

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Transcript

Clara Jordan: 0:00

You know, Mike was the perfect partner for this in my eyes, because I really wanted to take actually a step back as the conference organizer. I didn't want to be directly involved in the storytelling because I wanted the storytellers to really know that this is, you are in the driver's seat, I don't have an agenda, this is about what you feel this audience needs to hear and I knew that putting those storytellers in Mike hands that that would happen. So maybe I'll turn it over to Mike and you can talk a bit about your process.

Mike Lang: 0:32

Welcome to Leading Through Stories, a podcast that explores the how and why of digital storytelling. My name is Dr Mike Lang and I'm the founder and lead instructor of Common Language Digital Storytelling. In each episode, our level three facilitator, Kristy Wolfe, connects with storytellers or common language trained facilitators to learn more about the health and wellness stories that they are creating and sharing. Life is made up of meaningful moments. Which ones do you want to share?

Kristy Wolfe: 1:00

With me today is Clara Jordan and Mike Lang. We have two people on the podcast today and I am really excited. Now, Mike, people already know you. You did the intro You've been on the podcast, so let's have Clara. Will you introduce yourself?

Clara Jordan: 1:17

Sure. Thank you so much, Kristy and Mike, for having me on the podcast. It's a real pleasure to be here. My name is Clara and I'm the manager of education and engagement at Pediatric Oncology Group of Ontario, better known as Pogo.

Kristy Wolfe: 1:31

Perfect. Thank you, Mike. Since you're here, let's do it. Tell people a little bit about yourself and Pogo, maybe.

Mike Lang: 1:38

Yeah, yeah. Well, I've been doing digital storytelling for about 12, well, close to 15 years, I guess. Pogo I've connected with a few different times over the years. It was just though, a couple of years ago when Clara emailed and said, mike, we'd like to make digital stories for our annual conference, and I said that is the best idea I've heard in a long time. Let's do it. And so she connected me with all these wonderful storytellers, and yeah, that's a little bit about how we connected most recently to do some digital storytelling.

Kristy Wolfe: 2:13

Oh, that's perfect, Okay. So, clara, will you tell everybody a little bit more about Pogo so we all have kind of an understanding of the organization?

Clara Jordan: 2:20

Well, it's a great story actually.

Clara Jordan: 2:22

So in 2022, I was working with a planning committee of clinicians to plan Pogo's annual Symposium on Childhood Cancer, and that's an annual conference for pediatric oncology health providers where we try to bring the latest advances in research and clinical care to improve childhood cancer care across the system, and we sometimes choose an overarching theme for the conference, and the theme that year was central nervous system tumors, and so, in thinking about how to bring that content to life for the attendees, I wanted to ensure that we had persons with lived experience as really integral to the program, to infuse all of the content with that lived experience.

Clara Jordan: 3:11

And there was a little bit of a challenge in doing that that year, because many of the survivors of central nervous system tumors have cognitive challenges as a result of their diagnosis or treatment, and so I was trying to think of a really inclusive way to bring them into the fold and ensure that they could tell their stories and have a positive experience. And I knew Mike from a conference we had worked on together years ago for survivors of childhood cancer, and so I thought to myself this is the person I need to connect with to see how we might do this together.

Kristy Wolfe: 3:46

Nice. Thanks for watching.

Mike Lang: 3:49

Well, you know, I just, you know love the idea of what Clara's talking about, about sort of centering patient voices and patient experiences in a very academic conference, right, and I think that's such an important thing to help remind people why this matters in the first place, Like we're going to talk about some very technical facts and data in this conference.

Mike Lang: 4:10

But you know what we can't lose sight of, the reason why we're here in the first place, and that's these, you know, these stories, right, these individuals that are highlighted at different points in the conference. So, you know, when I hear, you know, when I heard that, I was like, wow, cool. You know, like this, you know you want to embed these voices and these experiences into the conference and also understanding some of the, some of the challenges associated with. You know, like she said, you know the tumors in the brain can impact all sorts of different aspects and so getting up on stage in front of a, you know, a few hundred oncologists, it's maybe not everyone's cup of tea, and so this idea of of helping them in a comfortable way tell a story that really mattered. I, you know, of course, I was on board right from the start. So, yeah, I loved it.

Kristy Wolfe: 4:55

When you first created those stories for the conference, was that co-created stories where people are working one-on-one? Was it a workshop? Was there parameters around what you were doing with those particular stories or what you were looking for out of those Sure?

Clara Jordan: 5:08

Well, I'll start by saying you know, Mike was the perfect partner for this in my eyes, because I really wanted to take actually a step back as the conference organizer. I didn't want to be directly involved in the storytelling because I wanted the storytellers to really know that this is you are in the driver's seat, I don't. I don't have an agenda. This is about what you feel this audience needs to hear and I knew that, putting those storytellers in Mike hands that that would happen. So maybe I'll turn it over to Mike and you can talk a bit about your process.

Mike Lang: 5:39

Okay, yes, yeah, I think it's a great connecting with with all the storytellers and really, what I would say is exactly what Clara said. You know, like they want to know what matters to you. As someone with the central nervous system tumor or this year 2023, you know, I worked with a bunch of people who were pediatric cancer survivors, who now work in oncology, which was incredible, you know, and so, but anyways, I would just say, you know what, what matters to you guys, what do you want to talk about, and that's what we want you to share. And so it was really cool how it was very open, ended in that way and it allowed them the freedom to talk about what they thought mattered. And what's really cool about it is just how each story had something that you know somebody who works in oncology could take away from it. You know, without really prescribing anything. You know, all we had is this general topic area, you know, and and then when you start asking about these meaningful moments, all of a sudden, you see these incredible sort of pieces of wisdom come out.

Mike Lang: 6:37

So so the first year, we worked with a little guy named Ethan, who is nine, but he went through his treatments when he was younger than that, obviously, and and you know, what I loved about his story is he basically used this metaphor of driving cars like on his iPad, like this app that he played racing game on the iPad as the metaphor for his cancer experience. And, man, it was so insightful for a nine year old to talk about cancer using this sort of metaphor and that one really stood out to me as something like kids are just so creative and it's so cool that he had that freedom just to tell the story from his experience about what that looked like and from connecting with his mom his mom was in the room the whole time just in case I needed help and and connecting with his mom. Afterwards she said everyone came up to me at the conference and said that was Ethan. Right, he loved, I remember him playing his racing game in the hospital and they were like just connecting with him, you know, through something they knew that mattered to him, right, and it was really cool to work with Ethan on that story.

Mike Lang: 7:38

And then this year, one that really stood out to me was Dr Eugene, and you know he basically his story is about how he couldn't walk because he was in the ICU and they thought he was going to die from an infection. He got from his treatments during his treatments and, and now he had to learn to walk again. And now he is one of the foremost cancer physiatrists in the country who trains other physiatrists to help people walk again once they've gone through something like cancer, right, so it's. It's an amazing story of just using a difficult experience in your life to help others, right, and I think that's what was really cool about the 40th anniversary stories, right, Clara, is how all of these people, their own experiences, totally influenced the way that they interact with patients and families today, and so it was just really inspiring to get to watch all those stories.

Kristy Wolfe: 8:30

Well, clara, before I'm going to ask you about some stories that might have been really impactful for you as well, but I, mike, I just wanted to ask when you worked with Ethan, nine years old, a lot of our facilitators actually work with like adults, and so how did you set up to work with kids? It sounds like parent was in the room, what? What else happened to do this with like somebody under the age of 18?

Mike Lang: 8:56

Yeah, it was it's a lot more directed than normal, in that, you know, I I would ask a lot of questions and lots of probing questions, because sometimes you get like one word answers things like that, right. But but you know, once we had our metaphor of the racetrack, I would be like Ethan. So you know, there's those speed boosts. You know what was a speed boost for you in your cancer experience? And he would say, oh, it was definitely when the clown came in, or it was when, you know, someone brought me popsicles. I was a speed boost. And then I was like, okay, so what's a barrel? You know, you know those barrels that are in the way, what were some of the barrels for you?

Mike Lang: 9:35

And he would say things like oh, well, it's, I hated doing these pet. You know the scans. And his mom would explain these were pet scans that you know, he was really afraid of the machine and stuff, right. So so anyways, it was just sort of like using the metaphor to ask him questions Was better than saying you know what were some meaningful moments for you and your cancer experience? It doesn't really work with a nine-year-old, right. So so once we had that racetrack metaphor, it became a lot easier to get some of those moments from him. So yeah, I think that's sort of the main difference is a little more directed and you got to be really creative yourself and just go where, the, where the kid leads right.

Kristy Wolfe: 10:10

So Claire, I'm gonna ask you about when that was shown at the conference. So mom was at the conference. Was Ethan at the conference as well?

Clara Jordan: 10:19

Ethan was not at the conference. Ethan was at school that day, but his mom, cindy, was at the conference. She actually was a speaker for another session. That was also phenomenal and I think it was just as Mike alluded to like, just so insightful beyond Ethan's years, right to hear about this experience from his perspective. Even his mom, who was with him day in and day out, was so blown away to hear about how he saw it through his eyes and what he took away from it and just, I think, the overwhelming sense of like, resilience in children and their ability to To see things through you know innocent eyes and and come away with different lessons than we might as adults. So that one certainly was one of my, my highlighted stories to make. It was. It was wonderful.

Kristy Wolfe: 11:10

And then I mean for as like organizing the conference, you've now got two different perspectives about the same story. You've got Ethan's story that you can bring and share, and then separately. His mom is talking about her own experience. I'm assuming I don't know what she presented on, but I think that really was a great experience. That really lends itself quite well to not just bringing patient, but that that full gamut of what this is like for family is going through it. Oh, that's really neat.

Clara Jordan: 11:38

Well, and actually, on that note, Kristy, another story that really sticks out in my mind is when done by Layya, who's the sibling of a cancer survivor, and Lea's story is called Comfortable in Uncomfortable Places and she talks about, you know, the profound impact that witnessing her sister, sara go through cancer had on her and that it took her a long time to be able to tell her story, even to sort of feel like she had a story to tell, and she's now pursuing medical school and that's in large part because of her.

Clara Jordan: 12:12

You know her experience as a child, really from the time she was born. Her sister was sick and then, at the same conference we had Sara tell her story, her sister, and for me those two as a pair really stick out in my mind. Maybe it's because I also have siblings that I'm very close to, and just it was so interesting, as you say, christy, to think about the impact of this disease on not only the person who's diagnosed but all of the caregivers around them, particularly when it's other children those are. You know, those are things that imprint on people for a lifetime, and it was really wonderful to give those two ladies a chance to tell their stories. You know that intertwine, but they also were able to do that separate from one another, which I know they both really got a lot out of that.

Kristy Wolfe: 13:01

Well, this is amazing because so, clara, you don't know this, mike knows this I'm the parent of a congenital heart disease kiddo, and so I often think about the sibling effect and that kind of side of things. So I'm glad that you're almost ahead of the curve, I have to say. On considering what is happening for siblings, because it's it's occasionally talked about, I will say yeah, oncology is actually really far ahead from that right.

Mike Lang: 13:25

You know, like oncology, for a long time pediatric oncology has considered sort of the family experience and the sibling experience and a lot of the pediatric oncology programs that you'll see, like the support of programming, include siblings or even sometimes have specific programming just for siblings in their work. I know Kids Cancer Foundation Alberta here at Calgary does. I know POGO does a sibling, sort of sibling events and sort of peer support type of stuff. So it's really, you know, maybe there's, you know, one of the I think one of the challenges that you see in health care is there certain environments where things are like commonplace and and it should be in it's it. There there's not as much, I guess, cross pollination as there could be sometimes between different populations of people. So it's so. Anyways, that's something you know. Kristy, you should. You should share Pogo's blog post with all their stories and be like, hey, have you thought about this?

Kristy Wolfe: 14:20

Oh, absolutely. We've been talking about sibling groups, not necessarily congenital heart, but with larger pediatric health care organizations, and so I am glad that you guys have already tried it, because when you have an example that people have already tried, I just find often organizations are more open to it. Clara, did you have any trouble convincing Pogo that digital storytelling was the way to go?

Clara Jordan: 14:45

You know I didn't, and I think that's a huge credit to the organization. I think we all at Pogo recognize that the work we do is rooted in in these children, youth survivors, parents, caregivers, loved ones, siblings. They are the ones that know this on a level that that all of us, you know we do our best to understand, but you can only really understand if you've lived it yourself. And so it was an easy sell at Pogo. I think there's huge support for, you know, enabling more patient and family and survivor stories to be shared and that's sort of part of the other hat that I wear at Pogo is finding ways to do that in different ways and in ways that ensure that we can be as representative as possible, because cancer, as we know, doesn't discriminate, it can happen to anyone and finding finding ways to help people tell their stories, no matter who they are, where they're from. I think if we can do that, well then we've, then we've done something right.

Kristy Wolfe: 15:51

Oh, I appreciate that and these stories. So you have mentioned three. Are they available publicly?

Clara Jordan: 15:58

Yes, they are. They're all available on Pogo's website and we share them from time to time on our social media channels as well, because we recognize that they live way beyond the moment right. Whether they're shared at a conference or somewhere else, they have staying power and we continue to get really wonderful feedback about these stories.

Kristy Wolfe: 16:19

Perfect. So I will put the links to each of those stories in the show notes, because I find when we are talking about them and we spend some time on each story, people often want to see that story and if they're publicly available, we want to kind of offer that up. Clara, I have a question about whether you have created a digital story yourself. No, the answer is not yet, not yet, not yet, not yet.

Clara Jordan: 16:48

But I have thought about it a lot, Kristy, because of your question about what is your meaningful moment. So it's an interesting thing to think about and I actually thought a lot about it too when we were approaching people to see if they'd like to be involved in these projects. As Mike mentioned, the first year we were talking with brain tumor survivors and other central nervous system survivors, and then last year you know, the conference went so well the first year that last year we engaged with pediatric oncology health professionals who were once childhood cancer patients, and in approaching all of those individuals to take part, I did spend some time with myself to think about just what's required to put yourself out there and to go to some of these deep places and think about you know, what is your meaningful moment and what's important to you. So I have not done it for myself, but I will say not yet.

Kristy Wolfe: 17:44

And so what? When you were thinking about that, what would you say is a meaningful moment that you might focus on?

Clara Jordan: 17:52

Okay, well, I'm really fortunate to have three amazing siblings, and one of my sisters, lizzie, was born with a developmental disability and we're just in the process as a family of transitioning her to semi independent living for the first time ever, and it's a really big deal for her primarily, but also for our family, and so I guess I've been thinking a lot about the transitions through the years and just all that I've learned from her. I mean, I think she's my greatest teacher in life for sure, and I feel that there's a big, meaningful moment coming up for her and for our whole family. So that's sort of where my mind goes when I think about a story I might like to tell one day.

Kristy Wolfe: 18:41

Oh, absolutely, and probably helps to inform some of the work that you do would be my perhaps.

Clara Jordan: 18:48

Yeah, it may be why why Layya's story touched me so much. Because I think that sister bond and that sibling bond I have an amazing brother, shout out to my brother too that sibling bond is really something, something incredible if you're lucky enough to experience it. And perhaps, perhaps that's why that one stuck with me.

Kristy Wolfe: 19:08

Absolutely Okay. So, mike, now I want to know if you were going to do another digital story. You've done a few. What would be your meaningful moment of a new digital story? Oh man.

Mike Lang: 19:21

I have no idea right now, who knows? Probably something to do with kids too, you know, just because they're a big part of my life right now, with three little kids running around and making all that noise in the background, you know. So something to do with that, probably something around my family, for sure. But yeah, yeah, you know, sorry. One last thing I want to add before I don't know if we're getting close to wrap up, but I think it's really important also to to like give big props to Pogo for saying yes to something like this. And Clara said it was an easy sell, but I think it's an easy sell only for the right organizations, right, who are very committed to sharing the patient and family experience, and it's not something that I see very like super commonly. You know, even today, when we know that we need to engage patients and families in all these different types of opportunities in academic settings, but in sort of, you know, healthcare quality improvement, all that stuff, it's becoming more of a central idea, but it's still difficult to give up control of the messaging and to say we are going to give you a platform in the middle of our conference to say what you want to say. Man, I mean it's scary, right, it's scary, I think, for anyone to do something like that.

Mike Lang: 20:37

So I think huge props to Clara and Pogo for making that leap right. And I think it has something to do with also knowing a little bit about me and knowing, sort of, how I work with people and knowing that there's this trust that occurs between an organization and a facilitator, you know. But also it is a huge leap of faith, and so I wanna sort of acknowledge you, clara, for that, and Pogo, for being willing to step out like that because, like you said, you know it's been a big part of the conference. People have really appreciated it over the years and it would never have happened if you didn't take that first step right and say, yeah, let's give it a shot, let's see what happens, right. So, anyways, I love that. I love working with organizations who don't just say patient, family-centered care, but actually live it out in the values and the way that they organize their work and the way they do things day in and day out, and Pogo is definitely one of those I really like.

Kristy Wolfe: 21:29

So, yeah, that is something that I've heard throughout this conversation, just like listening to both Mike and Clara talk about the stories, but also that there wasn't a. The story needs to be about this. The story needs to be about that, because I do find that sometimes organizations are like we need a story about, and you're like, oh boy, but having an open-ended, what is the story that you want to tell and we'll develop curriculum or we'll develop a talk around that and kind of take the lead from the storyteller, is a really big part of it as well. Now, one last thing I want to touch on before we jump off, but before we started recording. Mike, you mentioned that sometimes you get emails from some of the storytellers. Will you tell us what happened?

Mike Lang: 22:13

Not actually from the storytellers, from people who attend the conference. So there's literally like people in the conference who I've met because I've been involved in oncology a lot over the years and so I have all these connections in Ontario, in the oncology community in Ontario Princess Margaret and at Sick Kids and stuff like that, and so I'll get sometimes text messages or emails from people saying, mike, I just watched some digital stories and they were amazing. Thanks so much for doing this. I'm like thanks so much for saying something and thanks so much for going to the conference, and so it's really fun.

Mike Lang: 22:45

You don't often ask someone who makes the stories and then I give them over to Clara and Clara embeds them into the conference programming and writes sort of a pre-briefing and debriefing script for them. So I get to see that much, but I don't get to actually I'm not in the room and so it's just really cool to hear secondhand sort of affirmation of the good work that's done when it comes to sharing these stories in the conference. So yeah, over the years that's been one of my favorite parts and it's usually real time as people are watching. They send me an email we just watched the story, we loved it. So yeah, anyways, very cool.

Clara Jordan: 23:20

Clara, I'm so glad to know that that feedback is making its way all the way back to you and Alberta.

Mike Lang: 23:25

Mike, that's really cool and.

Clara Jordan: 23:28

I've definitely heard similar sentiments from conference attendees in the moment after the conference and obviously for me the most gratifying feedback is from the storytellers themselves anytime that they come to Mike and myself and tell us that, like I really got something out of that, I learned something about my experience that I hadn't even really fully unpacked before. We had one healthcare provider who said I don't think I realized all the things that I had sort of maybe packed down over the years that I had to think about again for this story and really think about how it's informed my clinical practice now that I work with children with cancer. That's a really gratifying thing to be able to know that you've had an impact in that way, and so huge kudos to Mike, because that is the result of excellent support and facilitation, and Mike is I mean, he's the master at that.

Kristy Wolfe: 24:25

Friends, thank you so much for joining me today. On Leading Through Stories, I am gonna go take a look through a bunch of those Pogo stories. I'm also gonna take a look at how your conference works, because this is of interest to me and some of the organizations that I work with. So, clara, I might reach out to you again and ask more questions.

Clara Jordan: 24:42

Oh, please do. I'd love to connect on that, Kristy, for sure. Thank you so much for having me.

Mike Lang: 24:53

Thanks for listening to this episode of Leading Through Stories, presented by Common Language Digital Storytelling facilitator. Training for health and wellness change makers. Everyone has a story to tell and we would love to hear from you what resonated for you in this episode. What health and wellness story do you wanna tell? You can email us at Kristy@ commonlanguagedst. org or find us on Instagram at Leading Through Stories. Don't miss out on the next episode. Subscribe to Leading Through Stories on your favorite podcast platform or sign up for our newsletter to get new episodes straight to your inbox. Thanks again for listening and we'll see you next time.