Caring for Our Kids: A Pediatric Cancer Survivorship Program Delivers Lifelong Care

00:00:00:25 - 00:00:28:07
Tom Haederle
Welcome to Advancing Health's new limited podcast series, Caring For Our Kids. The American Hospital Association's Julia Resnick will speak with hospital leaders and clinicians, as well as children and their families, to explore how pediatric hospitals are designing care to meet the needs of their communities.

00:00:28:09 - 00:00:47:27
Tom Haederle
We're glad you can join us for this Advancing Health podcast. I'm Tom Haederle with AHA communications. Today's episode of caring for Our Kids focuses on how Texas Children's Hospitals pioneering pediatric cancer survivorship program continues the post-treatment care.

00:00:48:00 - 00:01:03:08
Vaughn McCullum
It's a strange experience, especially for a kid because we don't know what happened, and it changed my perspective on a lot of things like how crazy life really is, how stuff could just happen out of nowhere.

00:01:03:10 - 00:01:31:06
Julia Resnick
That was Vaughn. He's in high school. He's a video gamer and a basketball player. He's also a pediatric cancer survivor. We'll hear from Vaughn and his mom later in this episode. Welcome to Caring For Our Kids, a new limited podcast series from Advancing Health. I'm Julia Resnick, director of strategic initiatives at the American Hospital Association. We'll be exploring how pediatric hospitals are designing care to meet the needs of the children and families they serve.

00:01:31:08 - 00:01:56:18
Julia Resnick
This episode is personal for me. When I was 20 years old, an otherwise healthy college sophomore. I was stunned to be diagnosed with acute myeloid leukemia. And I was lucky in every way. I had access to best in class medical care insurance to cover my treatment. Ongoing support and love from a wide circle of family and friends. The cancer that responded to treatment exactly like it was supposed to.

00:01:56:21 - 00:02:17:20
Julia Resnick
I emerged on the other end, cancer free, with minimal side effects and ready to take back my life. I work in health care because I want everyone to have the opportunity to live their healthiest life possible. Because if we don't have our health, our quality of life suffers. Merely surviving isn't enough.

00:02:17:22 - 00:02:41:13
Julia Resnick
Just a few decades ago, the survival rate for pediatric cancer was only 10%. So the focus of treatment was to create the best chance for survival. Over the past 40 years, medical advances have caused the survival rate to skyrocket. Now, 85% of childhood cancer patients survive. Yet many kids that survive childhood cancers have long term effects and side effects.

00:02:41:15 - 00:03:10:06
Julia Resnick
For me, that the cancer or the treatment. A cancer diagnosis and subsequent treatment can be traumatic and isolating for both the kid and their parents. So part of helping pediatric cancer survivors to thrive is holistic, comprehensive survivorship care. For this episode of Caring for Our Kids, I spoke with Texas Children's Hospitals Dr. ZoAnn Dreyer. Professor and pediatric cancer survivorship and clinical director of the Long Term Survivor Program.

00:03:10:08 - 00:03:28:26
Julia Resnick
I also spoke with 15 year old Vaughn McCullum and his mom. Vaughn is a cancer survivor and participant in Texas Children's cancer survivorship programs. To set the scene, let's start with Dr. Dreyer. She has spent the bulk of her career at Texas Children's. Give me some background on the hospital and the children it serves.

00:03:28:28 - 00:03:59:05
ZoAnn E. Dreyer, MD
So we're actually the largest children's hospital in the country, and we are very proud of the fact that when the founders broke ground, the mission statement was to take care of all children, regardless of the environment to which they were born. And what that means is you could come here for treatment, whether you've got insurance or you don't, whether you're employed or you're not, you might be living at a homeless shelter, or you might be a member of the richest family in Houston, or the richest family in the U.S.

00:03:59:07 - 00:04:20:12
ZoAnn E. Dreyer, MD
All of those patients, all of those families will get identical care. And I think that's probably one of the things that makes me most proud of this institution. Now it's grown tremendously since I came as an intern. We have buildings everywhere. We now are able to staff the hospital 24/7 with attending physicians in every single specialty.

00:04:20:14 - 00:04:40:17
ZoAnn E. Dreyer, MD
And that's been probably in the last maybe 5 to 10 years. So pretty much everything you could want is here. Of course, Texas is huge. So we have many families that come from several hours away. We also have a fair number of patients that are international patients that come here for therapies that we may have, that may not be available elsewhere.

00:04:40:19 - 00:04:52:10
Julia Resnick
As a seasoned pediatric oncologist, Dr. Dreyer has seen firsthand how the field has evolved. I asked her to share what changes she has seen in pediatric cancer care and survival over the years.

00:04:52:13 - 00:05:21:24
ZoAnn E. Dreyer, MD
Overall childhood cancer cure rates right now are 80%. When you compare and include both those that have the toughest outlooks and those that are much easier to treat for the most part, like leukemia patients. In the leukemia world, acute lymphoid leukemia, the most common cancer that we see, the cure rates now range from 90 to 95. And in a new study, we had one study where the cure rate was 98%, which is phenomenal.

00:05:21:27 - 00:05:43:27
ZoAnn E. Dreyer, MD
When I started in oncology, cure rates were of course not as good as they are now, but kids would finish therapy and we'd say follow them for a year or two. And then in 1988, the founder of our cancer center, Dr. Fernbach, who's also one of the fathers of pediatric oncology, came to me one day and said, we need to start a survivor program.

00:05:44:00 - 00:06:07:10
ZoAnn E. Dreyer, MD
Well, interestingly, almost no place had survivor programs then. And in today's world you can have a whole career in survivorship. In those days, you could not. So we started off and I think our first year we saw 100 patients. And then we developed a program through these years to a very sophisticated program that we now see 1,000 to 1,500 patients.

00:06:07:13 - 00:06:17:28
Julia Resnick
Let's meet Vaughn, one of Dr. Dryer's patients from Texas Children's Hospital. Vaughn was seven years old when he got his diagnosis. He told me what he remembers from that time.

00:06:18:00 - 00:06:43:10
Vaughn McCullum
Well, as a younger kid, I didn't really know what was going on, you know? Once I got to the hospital, I was like...I thought it was like, just like another headache or something. I was seven, still learning multiplication. I was diagnosed in 2016, angioblastoma. I had the brain surgery and I was inpatient, learning how to talk

00:06:43:13 - 00:06:54:17
Vaughn McCullum
and walk for about 40 days and 40 nights. Then I got transferred outpatient, and I was in and out of the hospital for about two and a half years.

00:06:54:19 - 00:07:07:18
Julia Resnick
Vaughn has been cancer free for eight years now and is officially a survivor. That makes him eligible for Texas Children's Survivorship Program. Dr. Dreier spoke to me about why programs like this are so important for kids like Vaughn.

00:07:07:20 - 00:07:26:07
ZoAnn E. Dreyer, MD
So to us in pediatrics for our program, if you've had cancer, whether it was your first time, your second time or third time, but you've been off therapy for two years, then you're eligible to come to our survivor clinic. If it's their first visit, they're very excited to be there because that's kind of a milestone. When they get there

00:07:26:08 - 00:07:47:19
ZoAnn E. Dreyer, MD
of course, we welcome them. Our director is there to welcome them. We've already abstracted all their information, so we have a very good sense of who they are, what their needs are going to be, what their family situation is. But then they kind of start off like new patients from a survivor perspective, because it's a whole exhaustive evaluation with them about signs and symptoms

00:07:47:19 - 00:08:06:27
ZoAnn E. Dreyer, MD
they may be having, worries and concerns they may be having. We get lab work generally after the visit in case we need to add things that we hadn't thought of after we talk to them. We try to schedule on the same day any studies they may need like an echocardiogram or lung function testing. So it's a long day. As an important part of that

00:08:06:27 - 00:08:23:29
ZoAnn E. Dreyer, MD
every survivor sees our social worker support team, which is terrific. Financial counselors as needed, especially for those that may not have good coverage. And we work to get them into a program that will help to cover give them health care coverage, not just to come here, but in general. We have a little thing that we give a survivor every year.

00:08:24:00 - 00:08:52:23
ZoAnn E. Dreyer, MD
They get a little specialty bear, and we have an incredible program that was developed here called the Passport for Care, which is an internet-based tool that is linked to the Children's Oncology Group or a major research group which developed a huge set of guidelines. So that if you know, Mary had leukemia when she was five and now she's 15, and I know what therapy she had because I've already put that into the computer, I can click the mouse about five times and up will pop all the guidelines.

00:08:52:23 - 00:09:12:08
ZoAnn E. Dreyer, MD
It would say at this point she may need her heart looked at, she made her lungs checked and so on and so forth. So the surveillance is really sort of organ system dependent on the therapy that the children had. Some of our therapies can affect your lungs. Some can affect your heart. Radiation, of course, can increase your risk for secondary cancers and affect your heart and a number of things you're learning.

00:09:12:10 - 00:09:31:27
ZoAnn E. Dreyer, MD
We certainly off and on will pick up new problems. Our survivors don't just come once a year for their survivor checkup, but they're in constant contact with us. One of the most important parts of what we do is a psychosocial support. And in fact, we've just completed a review of the last year of our patients' mental health assessments.

00:09:31:29 - 00:09:57:04
ZoAnn E. Dreyer, MD
And we have a very dedicated social work program here are very engaged. And about a third of our survivors identified a significant mental health need. And I personally think that that's probably the most important part of the program. How often do we find a significant organ system issue? Small percent of patients. How often do we find significant mental health issues?

00:09:57:07 - 00:09:59:16
ZoAnn E. Dreyer, MD
A lot of patients.

00:09:59:19 - 00:10:07:27
Julia Resnick
Let's go back to my conversation with Vaughn and his mom. While he is cancer free, his diagnosis and the side effects are still part of his life.

00:10:07:29 - 00:10:31:22
Vaughn McCullum
Well, yeah, the side effect. I have some scarring. It was like, you know, my stomach. I forget what where it is, but sometimes I have problems going to the bathroom, so I'd have to stay home from school 1 or 2 days. The hair, it's pretty thin now. Which I used to be like all of them, like in front of my face because I didn't know how to have it.

00:10:31:24 - 00:10:48:00
Vaughn McCullum
Then I got a haircut. Since I had a lot of hair and it was all long, it looked like I didn't have that much. But now that it's shortened and it's hair all over, people don't really know it anymore. People just see me as a normal kid.

00:10:48:02 - 00:11:26:06
Megan McCullum
Vaughn’s case was he was always the kid...that it was, wow, we never saw that coming or we never have seen this happen. And so it was a lot of firsts for him, especially the way and the quality of life that he has now in comparison to the unfortunate that a lot of other kids that have had the medulloblastoma, brain cancer, the surgery, the brain radiation, the spine and, you know, the chemotherapies that he's in a B honor roll, that he's in a college prep school, that he's running and doing all of these things is not the normal.

00:11:26:08 - 00:11:47:06
Megan McCullum
And so just to always as a physician, to keep that in mind, I remember when he was something that stands out to me was one of your physical therapy appointments and he wasn't walking yet. And his physical therapist, he wanted to climb this rock wall. She was like, you can't do that. Like there was mats, but she's like, yeah, we're not going to do that just yet.

00:11:47:06 - 00:12:10:07
Megan McCullum
She was very nice. And Vaughn looks at her and says, no, I'm going to do it. And he crawls over and she says, Vaughn, not yet. And he still proceeds. And I said, go ahead, Vaughn, climb the wall. So he starts climbing. And it was small, but he climbs and he hits the little bell, and then he falls, and he looks at her and goes, I told you I could do it.

00:12:10:09 - 00:12:19:16
Megan McCullum
And I just believe that it's that mentality, and it's that drive that has really just got him where he's at now.

00:12:19:18 - 00:12:33:00
Julia Resnick
Other kids might not know what Vaughn has been through, but cancer is part of his and his family's story. Texas Children's partners with the Periwinkle Foundation to create a supportive community around kids with cancer and their families.

00:12:33:02 - 00:13:04:12
ZoAnn E. Dreyer, MD
So the Periwinkle Foundation started in 1983, and it started as a weeklong camp for patients on therapy and off therapy. And it's grown over the years to so many different camps and so many support programs and a huge arts and medicine program. And then about five years ago, probably they formally created a Periwinkle long term survivor program. And that program, they have socials once a month for any of our survivors 18 and above

00:13:04:13 - 00:13:41:07
ZoAnn E. Dreyer, MD
I think our oldest one that goes to that is about probably 45 now. And I actually did a survey with the survivors, and the impact on them was tremendous. On their well-being, their relationships with family, just about 6 or 7 different categories. Of the respondents, 80% - every category - was exceptionally impactful, if not 100%. So I think what that does is bring them together in a safe environment where they don't have to explain who they are, what they had, what it was like to be a cancer patient, which is what always happens to them when they're out of the community.

00:13:41:10 - 00:13:58:04
ZoAnn E. Dreyer, MD
And in fact, one of the kids - and they're young adults - in their comments was, this is my safe place. This is my family. I just saw a little girl that I took care of. She's 15 now. She was six, I think, when I took care of her. And she was so cute. She said all she wanted for her survivor visit was to get to see me.

00:13:58:06 - 00:14:08:13
ZoAnn E. Dreyer, MD
But it's not about me. It's about me, her doctor. So it really gives us that sort of full circle, extended family.

00:14:08:15 - 00:14:30:00
Vaughn McCullum
I've been going every year since I was about eight. First, I started off in family camp. It was like hanging out because everyone there knows and they all have their own story, which is all related. I've made many friends up here as well, so I talk to them even when I'm not at Periwinkle. And at Periwinkle,

00:14:30:00 - 00:14:33:08
Vaughn McCullum
it's just it's really fun. I love it.

00:14:33:10 - 00:14:42:03
Julia Resnick
As he looks towards his cancer-free future, Vaughn understands that his experience can help other kids as they navigate their own cancer journeys.

00:14:42:06 - 00:14:57:19
Vaughn McCullum
I remember sitting down with my mom. I was asking her, why me? And I remember she told me, why not you? as a reason. You can share your story with others.

00:14:57:21 - 00:15:27:18
Julia Resnick
With so many children surviving cancer, it is more important than ever for pediatric hospitals to continue to support their patients and families long after treatment, both their physical and mental health. Texas Children's continues to build on their trailblazing legacy of pediatric cancer survivorship programs for their community and for survivors across the country. Thank you to Dr. ZoAnn Dreyer for dedicating her career to pediatric cancer survivorship and sharing her work with us. And to Vaughn and his mom,

00:15:27:20 - 00:15:41:18
Julia Resnick
we know your family's story of resilience will inspire hope in others. This has been Caring for Our Kids, an Advancing Health podcast. Stay tuned for future episodes in the series, available wherever you get your podcasts.

00:15:41:21 - 00:15:50:02
Tom Haederle
Thanks for listening to Advancing Health. Please subscribe and rate us five stars on Apple Podcasts, Spotify, or wherever you get your podcasts.