Nemours Children’s Health is the Official Children’s Hospital of the Philadelphia Phillies. For Pediatric Cancer Awareness Month, the team graciously opened its doors to our podcast team during their Pediatric Cancer Awareness Night so we could bring you the inspiring patient story of 13-year-old Madison Handley. Diagnosed with cancer twice in her lifetime, Madison and her parents, Erin and Rob, share how cancer has affected their lives and why they feel it’s important to share their story.
In our second segment, we meet Nemours Children’s hematology/oncology nurse Dyane Bunnell, who has treated patients like Madison for 41 years. Her commitment and leadership have earned her a place on the national stage as the 2023/2024 president of the Association of Pediatric Hematology Oncology Nurses.
Carol Vassar, producer and host
Guests:
Madison Handley, Nemours Children’s patient, with her parents Erin and Rob Handley
Dyane Bunnell, MSN, RN-BC, CPON®, AOCNS®, Hematology/Oncology Nurse Specialist, Nemours Children’s Hospital, Delaware
Well Beyond Medicine, Episode 32 Transcript
CAROL VASSAR: Welcome to Well Beyond Medicine, the Nemours Children’s Health podcast. Each week, we’ll explore anything and everything related to the 80% of child health impacts that occur outside the doctor’s office. I’m your host, Carol Vassar, and now that you’re here, let’s go.
[THEME MUSIC] Let’s go oh. Well beyond medicine.
CAROL VASSAR: What was it like throwing out that first pitch?
MADISON HANDLEY: Definitely more amazing than I thought it would be.
CAROL VASSAR: It was the opportunity of a lifetime for 13-year-old Nemours Children’s Health patient Madison Handley last month at Citizens Bank Park in Philadelphia. Throwing out the ceremonial first pitch at the Philadelphia Phillies game that also marked the club’s seventh annual Childhood Cancer Awareness night.
The person who caught that pitch, none other than the man leading the charge on Madison’s behalf, as she fights cancer for the second time in her young life. Nemours’ oncologist, Dr. Jonathan Powell. Nemours Children’s Health is the official children’s hospital of the Phillies, and the team graciously opened its doors to our podcast team that night so that we could bring you the stories of oncology nurse Diane Bunnell, which you’ll hear in a few minutes, and of the Handley family.
As Madison’s brother, Braxton, looked on, we spoke with her and her parents, Erin and Rob, to learn more about her cancer battles, their effect on their entire family, their clear resilience as a family, and why they feel it’s important to share their story. Erin Handley takes us back to 2010 when Madison was just a toddler, and she and Rob observed a tiny yet concerning issue related to Madison’s eyes.
ERIN HANDLEY: When Madison was two, we noticed a strange glare in her eye. You could only see it at certain times, of her sitting in her highchair. It wasn’t all the time.
And we took it took her to her pediatrician, who saw something and left the room for 45 minutes to an hour. And then came back and said, you need to go to Nemours. And this was like a Friday afternoon, so we couldn’t get to Nemours until Monday. And, of course, we Googled everything, which you’re not supposed to do, but we did.
And so we knew what the chances might be. And so when we went to Nemours that Monday, the ophthalmologist did a deep dive and found out that it was bilateral retinoblastoma tumors in both of her eyes. The one in the left eye was about the size of a-
ROB HANDLEY: It was about 80% of the mass of her whole eye orbit; 80% of it was tumor. So, it was a lot more extensive than the right eye.
ERIN HANDLEY: Yeah, the red eye was like the size of a pencil eraser, like the end, but it was off to the side, so it hadn’t obstructed her vision in that eye. Now, we don’t know whether she saw out of her left eye because she was two, and she couldn’t say, I can’t see out of this eye. So and she didn’t have any problems.
She wasn’t falling down. She wasn’t acting like, you know. So we don’t know how long she didn’t have vision in that eye.
ROB HANDLEY: Yeah, I mean, she was just like any other two-year-old. She was taking things off the ground, putting them in her mouth. We had no reason to believe she had any–
ERIN HANDLEY: Vision problems.
ROB HANDLEY: Problems with her vision at all.
CAROL VASSAR: So it was just that little glare in her eye that didn’t look right.
ROB HANDLEY: If she was in her high seat or we’re out, anywhere, and light was coming into her, like at her face, if she was just at the right angle, it would turn silver, the pupil. If she moved to half of an inch left or right, it went back to black. What it ended up being was the light reflecting off the tumor. So that’s, that’s what drew our attention.
CAROL VASSAR: When you got that diagnosis, how did it affect your family?
ROB HANDLEY: Well, as our first child, it was devastating. Like like I said, we had we had no reason to believe that anything was wrong, that she was any other two-year-old, happy, healthy. But yeah, it was, I could only say devastated, you know.
ERIN HANDLEY: Yeah. It turned our world upside down, for sure. And then they asked if she had siblings, and I was five months pregnant with him. So then we had to do a lot of testing to see. Because it is, it can be hereditary. We were tested, we were both DNA tested, and we are not carriers of it. For so, for her, it was completely sporadic.
ROB HANDLEY: Yeah, we were both negative for any kind of eye disease. And at that point, it was determined like a germline mutation in her chromosomes.
CAROL VASSAR: What was the treatment for that at that time?
ROB HANDLEY: The treatment was Madison went to Philadelphia’s very own Wills Eye Hospital. I’d like to give thanks to Dr. Jerry and Carol Shields, and Sarah Lally at Wills Eye. They would do a treatment called cryotherapy. They would actually freeze the orbits of her eye in preparation for chemo, and it allowed the chemo to be much more effective, like centralizing on the eye.
CAROL VASSAR: So she had chemo at that time.
ERIN HANDLEY: She did, yeah. She had, she went through her first, she got her port placement at Nemours and then went through her first chemotherapy. And while we were there, the eye started to swell. And no one really knew why.
And so, I think in the in the end, the chemo did what it was supposed to do. It broke the tumor up. But then the tumor just went into her eye and just made her eyes super sick. So by the time we got back to Wills a month later, they said they’re going to have to take the eye. So that was even harder news, I think. I mean.
ROB HANDLEY: It was a month later, after the swelling had gone down, that they anucleated the eye.
CAROL VASSAR: So she lost her left eye.
ERIN HANDLEY: Her left eye.
ROB HANDLEY: Correct.
CAROL VASSAR: Diagnosis to treatment, to, at that point, going into remission, how long of a time period was that?
ROB HANDLEY: From diagnosis until remission, I want to say.
ERIN HANDLEY: Like six or seven months.
ROB HANDLEY: Yeah, it was seven. She started treatment in February of 2012. I think she was, or she was deemed cancer and tumor-free in August of 2012.
CAROL VASSAR: Madison, I’m going to ask you, do you remember any of this?
MADISON HANDLEY: No, I don’t remember any of it at all.
CAROL VASSAR: So as far as you’re concerned, life has been, life was good, from the time you were a little girl, doing everything young ladies do. What kinds of things did you get into? I understand swimming is big for you.
MADISON HANDLEY: I played soccer from elementary into middle school. I’ve been a very creative person and love doing art.
CAROL VASSAR: What kind of art do you do?
MADISON HANDLEY: Any type that brings me joy.
CAROL VASSAR: You have a very positive outlook. We’re going to talk about that in a few minutes. So what happened a year ago? And I’m going to throw that, actually, Madison. What happened a year ago this month?
MADISON HANDLEY: It started with me going to soccer tryouts and noticing that my knee was hurting. And it kind of progressed to get a little worse as we went on, so we went to a doctor and got some X-rays done. And that day, we were told to come back and get an MRI of my leg. And that evening is when we found out.
CAROL VASSAR: How did you feel?
MADISON HANDLEY: There were a lot of emotions to feel.
CAROL VASSAR: Did you work it out through art?
MADISON HANDLEY: Yeah, art was definitely my best help throughout all of this.
CAROL VASSAR: Erin, how did you feel?
ERIN HANDLEY: I mean, it felt like, how can this happen again? And her not remembering, as a two-year-old, was kind of a blessing. We were there to experience it.
She had a lot of doctor’s appointments in those ten years, but she didn’t remember the treatment part. But we kind of thought she’s strong. She’s done this once. We can do this. And that’s kind of how we took it on.
They told us she’s going to have to have chemo and she’s going to have to have a surgery, and we said, OK. We can do this.
CAROL VASSAR: Rob.
ROB HANDLEY: It definitely felt like we were reliving a nightmare. I mean, when she was diagnosed at, with a retinoblastoma after the treatment, we were aware that she would have higher risk to other types of cancer, but only like slightly higher. The second time when she was diagnosed, we did find out that one in five bilateral, or it may have just been retinoblastoma kids, but one in five would go on to develop osteosarcoma.
So, you know, but it definitely felt like a nightmare again, but we had been through it. We knew we could do it. This girl is extremely headstrong, and she is a fighter. The part that stings, I think to me, one of the most is, is that we had just celebrated ten years cancer-free in August, to a month later being re-diagnosed.
And it just felt like we went down the hole again. But we don’t quit.
CAROL VASSAR: Tell me about what happened in the ensuing year. What kinds of treatments did she get? She missed an entire year of school, I. Understand what happened in that year?
ERIN HANDLEY: So it started with lots of scans and then her port placement, right? And then you went in, she did two cycles of chemo, so that was six treatments. So a cycle was three treatments.
ROB HANDLEY: Each cycle is five weeks of treatment for a full cycle. We went through two cycles, so it was two and a half months. And then we went into leg surgery.
ERIN HANDLEY: Yeah.
CAROL VASSAR: And the leg surgery?
ROB HANDLEY: The leg surgery was where they actually cut out the bottom right part of her femur and replaced it with a titanium insert and a full right knee replacement with titanium.
CAROL VASSAR: Madison, that’s a lot. You’re 13. How did you feel during this time period, and what made you so resilient and made you a fighter, as your dad described?
MADISON HANDLEY: I don’t know exactly where it came from. I’ve always just been the person in life to never give up, for with anything I’ve ever done. So I just kept going and fighting as hard as I could.
CAROL VASSAR: And how is your health now? What’s the prognosis at this time?
MADISON HANDLEY: We’re doing really good now. I’m back at school, doing a lot of PT, and working towards walking again.
ROB HANDLEY: Just to touch on that, all of her intravenous or systemic chemo, at the moment, is behind us, and she’s just on a daily, or it may go to every other day, oral chemo treatment. But, yeah, we are keep on keeping on.
CAROL VASSAR: You’re on your way.
ROB HANDLEY: Yeah.
ERIN HANDLEY: We’re on our way.
CAROL VASSAR: Why is it important to share Madison’s story? Erin.
ERIN HANDLEY: Well, unfortunately, there are a lot of other families that are going to find themselves in this position. And I would hope that our story could help them through. And there are definitely hard days ahead, but we tried to find as many good things along the way as we could.
And like Madison said, arts and crafts just kept her mind off of what was going on and got her through, so.
ROB HANDLEY: Well, I think advocacy is extremely important. I mean, like Erin was saying, people are going to be sitting in our seat and filling our shoes. And there is strength in numbers and sharing stories, and giving back is just one way to show the camaraderie.
Madison’s great about giving back. As soon as she grew her hair back, from the age of three, she donated what, like, 18 inches of hair to wigs for kids. It’s almost like a fraternity or a sorority of people that are in the same situation.
CAROL VASSAR: Madison, I want you to answer that question. Why is it important for you to share your story with others who might be listening and others, just generally?
MADISON HANDLEY: That even though like you could be getting the worst news of your life, like just you’ll get through it. Like it might be the worst time, but you’ll conquer your battle.
CAROL VASSAR: Let me ask about your Nemours experience, especially most recently. I see Dr. Powell has come over here. He’s hugged you. You have a great relationship.
How has the Nemours experience been for you as a family? Rob, I’m going to go to you for this one.
ROB HANDLEY: I could not be any happier with the way, you know, Madison was looked after, the way we were, as a family, in general, were looked after. What was it, a total of 90-
ERIN HANDLEY: 87 nights spent in the hospital. So, 100 days. I just counted the nights that we stayed there, but we spent a lot of time there in the last six to eight months, so.
ROB HANDLEY: And they really do go out of your way to accommodate you and the whole family. You know, coming also during a pandemic, which complicates inpatient, they really made us comfortable and responsive. And they were there for us anytime we had questions or what have you. I mean, I can’t say enough about the care they provide.
CAROL VASSAR: Madison, what do you think? You were the one spending all that time in the hospital. Not alone, your parents, I’m sure, were there a lot of the time. Your brother was as well.
What did you think of the folks from Nemours and how they treated you?
MADISON HANDLEY: They were so nice. They cared so much about everyone that was there and just try to make you as comfortable as you could be.
CAROL VASSAR: Anything I haven’t asked that you wanted to share about your patient experience, about your resilience as a family? Having each other seems to be very important to y’all.
ERIN HANDLEY: It is. It is, and we have an amazing support system with our family and our community. They have just wrapped their arms around us, and whatever we’ve needed, they’ve provided. So that’s good.
ROB HANDLEY: I would just like to throw one last thing in. I mean, now that we have been through this journey two different times, I just want it stated that the parents, they know the kid better than anybody. So we have learned, very often, the parents are the ones that diagnose a cancer, injury, or illness.
ERIN HANDLEY: So if you see something.
ROB HANDLEY: If you see something, don’t sleep on it. You know your kid better than any doctor. And look into it.
ERIN HANDLEY: Yeah, because I don’t know that we, we didn’t say it before, but when she was two, before we saw the glow in the eye, every once in a while, the eye looked just a bit lazy. And so, at our well checkup, I just mentioned it. And twice was, they like, no, it’s fine. She looks OK.
Had they dilated her eye, they would have seen something. And they just didn’t. It wasn’t protocol then.
When I took Braxton back for a two-year-old well checkup, they now have a system in place that if you’d like to have a dilated eye exam, you can have that. And I have to believe it was because of Madison’s situation. But maybe another child will benefit from that, so.
ROB HANDLEY: Yeah, and also, the second, the most recent diagnosis with the osteosarcoma, we were very quick to think about her past cancer history. And a sore knee, that the inflammation is not going down, could very much indicate something potentially serious. So we were quick to react, and I think that could have made a big, huge difference in what’s going on here.
So definitely don’t wait.
CAROL VASSAR: And almost as if on cue, and as an endorsement of what Rob had just said, the crowd cheered. And the in-park Liberty Bell rang out to signal a Phillies home run.
Caring for pediatric cancer patients like Madison takes a specialized team. Which is incomplete without the care, compassion, and expertise of hematology-oncology nurses like Diane Bunnell, who has done this work for 41 years. Her commitment and leadership have earned her a place on the national stage as the 2023-2024 president of the Association of Pediatric Hematology Oncology Nurses.
Diane joined us to talk about her passion, her longevity, and her observations on how improved cancer protocols for children have significantly raised survival rates since she started out in 1982. Here’s Diane Bunnell.
DIANE BUNNELL: So, actually, I just celebrated my 41st year doing this work. So when I was a baby nurse, right out of getting my bachelor’s, I went right into pediatric oncology, and I’ve been caring for kids with cancer and blood disorders my whole career. And I am passionate about it, as are most of the hematology-oncology nurses that I know.
We just celebrated Pediatric Hematology Oncology Nurses Day. Our local chapter of AFON got T-shirts, and we made some goodie bags and bought lunch for the team just to celebrate the nurses and the nursing assistants who do this work. If you ask most nurses who are in this field, they would tell you that it’s an honor and a privilege.
It’s also nice to just recognize and them let them know that we appreciate what they do for our kids and for their families.
CAROL VASSAR: Many would consider it very much an honor but very difficult work. Talk about that.
DIANE BUNNELL: Yeah, so that’s the first thing anyone says. And if you try to have a bar conversation and you drop what you do, and you mention that you take care of kids with cancer, kind of long faces emerge. So two things I’ll say. I’ve always thought it was an honor to be able to be beside patients and families on such a tough journey.
But pediatric oncology outcomes are not what they were when I began my practice 40 years ago. And so now, we know that 84% of kids are going to be cured. They’re going to hear the news that their treatment is over, and their disease does not appear to be coming back.
And so, it sounds like it would be a sad thing, but the outcomes are so good. Wish it was 100%, but we’ll get there. But the other thing is just kids are so resilient. They’re just a pleasure to play with. And when they’re feeling sick, we’re there for them, to support them. But when they’re feeling just a little bit better, they’re braver and more resilient than most adults are.
CAROL VASSAR: Is there a patient story, without going into too many details as to reveal anything that’s private or not HIPAA compliant? Is there a patient story that sticks with you? From all of those years – 41 years, is it there one, maybe two?
DIANE BUNNELL: So without mentioning any names, I will just say that a patient that has always stuck out in my mind was an adolescent patient who actually grew up and even surpassed the age of 21, who had osteosarcoma, which is a bone tumor. And he was extremely brave went through a lot of recurrences.
I actually came to a Phillies game once and threw an opening pitch beside him, which was a huge honor. But I think what stands out about caring for him, and this is what’s so amazing about these children and their families, is his desire to give back. So when he was offered a Make-a-Wish, which is what most kids decide to go to Disney or go on some trip, he turned his Make-a-Wish into a donation of chairs back to the pediatric oncology unit where he was cared for.
Because he just couldn’t get comfortable in the chairs that we had in the hospital, and he wanted other kids to have this designed chair by him, and he donated them.
CAROL VASSAR: That is amazing.
DIANE BUNNELL: Isn’t it? So it’s, you know, it’s the gift that gives back, really. Working and caring for him and seeing his generosity and thoughtfulness for others was just inspiring.
CAROL VASSAR: Tell us more about your new leadership role. What are the goals of that organization?
DIANE BUNNELL: Oh, so the Association of Pediatric Hematology Oncology Nurses is all about supporting nurses in their practice through education and through clinical research and advancements so that we can provide the best care to children with cancer and blood disorders. So, it is all about nurses.
It’s a volunteer organization and taking on a volunteer role, but it is about meeting the members’ needs because most pediatric hematology oncology nurses just want the best for their patients and families. And together, as rare as pediatric cancer and blood disorders are, together we can make great strides and have great outcomes.
CAROL VASSAR: Back in the spring, there was a $78 million influx to Nemours from the Lisa Dean Moseley Foundation. Has that changed the way that you either do your work, or do you anticipate it will?
DIANE BUNNELL: That’s a great question. It has, it’s affected the way I do my work now because we’ve been it’s something a lot of meetings to really put together all of the input of the nurses, the physicians, the child life specialists, the psychologists, the whole team, and the patients and families to design a space of true healing. So that’s been exciting right now.
But when I think about the future, I am so honored that the Lisa D Mosley Foundation saw it in their in their vision to donate something that really will change the lives of kids with cancer and blood disorders. Their vision of combining research along with healing spaces and just promoting and supporting our work is just, it’s amazing.
CAROL VASSAR: How do you maintain your hopeful spirit?
DIANE BUNNELL: I think it’s the kids and the families. I mean, it is, it sounds so trite to say, and I’ve used the word honor before, but patients and families, we see them in their most vulnerable place. And then we have a night like tonight, where we get to celebrate them out on a baseball field. Running around, changing, you know, swinging the bat and just having a moment where people were applauding and really recognizing how hard they work to get back to wellness.
It’s funny. When we interview nurses who are interested in pediatric oncology and we ask them why they talk about wanting to be a part of patients’ and family’s experience and helping them, and then they always say, that sounds weird that I’m interested in pediatric hematology oncology. Doesn’t it?
And that’s when we always say, no, no. We get it. And you’ll fit right in. Trust me.
And we really have very low turnover, particularly at Nemours. Nurses who choose this profession stay for a very long time. Even though the work is really hard, it’s also super rewarding.
And when you get to come to a game tonight and see kids that you’ve cared for who are thriving and families who have gotten through the roughest parts of their lives, it’s really, it’s all you could ask for.
CAROL VASSAR: One more quick question. What does well beyond medicine mean to you?
DIANE BUNNELL: You know, it’s funny, I mentioned before, and it’s not just about statistics, but 84% of kids who are diagnosed with cancer are going to survive. So, our thoughts have to be well beyond the medicines that we give them in the moment. It has to be towards ensuring that we are doing the very best to keep them as healthy as possible on the journey so that they can enjoy the rest of their lives.
That’s their legacy, and we owe it to them to ensure that it’s safe. So, it really does fit in well. And we’ve learned a lot about that. You can’t just see a child in a bed in a hospital. You have to see a child in an environment that is about healing and getting back out in the community, and finding ways to deliver care at home instead of always in a hospital setting.
So, it really does align with Nemours’ vision.
(SINGING) Well beyond medicine.
CAROL VASSAR: Thanks for listening to our conversations, recorded at Citizens Bank Stadium, home of the Philadelphia Phillies, with me, Carol Vasser, and our guests, Diane Bunnell and Madison, Erin, and Rob Handley.
Our podcast door is open 24/7 so you can submit your podcast episode ideas and provide feedback too. Just visit nemourswellbeyond.org and leave us a voicemail. That’s nemourswellbeyond.org. While you’re there, check out our other episodes and subscribe to the podcast.
Thanks to Che Parker, Susan Masucci, and Cheryl Munn for their production assistance. Join us next time as we get another Philadelphia update, this time on the work being done at Nemours as a result of the $78 million donation from the Lisa Dean Mosley Foundation earlier this year.
Until then, remember, together, we can change children’s health for good, Well Beyond Medicine.
(SINGING) Let’s go oh well beyond medicine.
