Transcription:
Kentucky Children's Hospital's DanceBlue Hematology Oncology Clinic

Another informational resource from UK HealthCare. This is UK HealthCast, featuring conversations with our physicians and other healthcare providers.

Amanda Wilde (Host): Welcome to UK HealthCast from University of Kentucky HealthCare. I'm your host, Amanda Wilde. There's good news for kids with cancer and blood disease who need help navigating the challenges and pitfalls of school. My guest today is Courtney Emery. She's a school intervention specialist at Kentucky Children's Hospital's DanceBlue Hematology/Oncology Clinic. Welcome, Courtney. Glad to have you here.

Courtney Emery: Thank you for having me. I'm excited to be here today.

Amanda Wilde (Host): Let's unpack your title there. What do you do as a school intervention specialist? And how does that fit into Kentucky Children's Hospital's Dance/Blue Hematology/Oncology Clinic?

Courtney Emery: Well, thanks for asking. So as the school intervention specialist in the heme/onc clinic, I serve kids in any capacity regarding school. There's two of us on the team and we serve kids from diagnosis all the way into our long-term followup clinic. And we really provide anything that they may need. So, for some kids, that is providing and coordinating instruction, getting a teacher to come to their home when they can't physically go to school, and then also coming to the hospital when they can't leave the hospital due to treatment. Both of us, that are in this role as school intervention specialists, were teachers prior to being in this role. So we served students in that capacity, we were classroom teachers. And then, we stepped into this role to kind of bridge that gap and work as a liaison between the family, the school and medical team.

Schools have a lot of requirements and need a lot of paperwork filled out and those sorts of things and the complex medical diseases that the kids are fighting require a lot of them as well. So we're just here to bridge that gap, to help keep things flowing the best that they can. And really, our goal is to keep our kids on track academically and continuing on in their education with their peer group, because those peer relationships are so important.

So as we get into the heme/onc clinic, we are just an integral part of the team where our physicians will just contact us if a child is in school and we just come alongside of them and try to walk that walk. And if we see a need, we try our best to meet that need. And then as kids finish treatment and move into our long-term followup clinic, we help to follow kids because some of the treatments that they receive can cause cognitive difficulties. So want to try to make sure we are supporting kids long-term, knowing that some of the treatments that they receive can negatively impact their ability to learn.

Amanda Wilde (Host): So you can head off some of these difficulties before they ever happen.

Courtney Emery: Yes, that's kind of the goal. And it's my understanding that before the school intervention specialist position existed, a lot of our patients would actually be retained in their current grade level when they were diagnosed with some sort of cancer. And so now, in the position of school intervention specialists, we come alongside and help to bridge that gap so that they can just continue on, keep learning while going through treatment and then go on with their peer group to the next grade level.

Amanda Wilde (Host): That is a great example, because I was going to ask how you know, you're being effective, how you measure your impact, and that seems like a good example of that.

Courtney Emery: That is really a great example. And we also are seeing lots of kids graduate high school, which is very exciting. And then, we actually follow into college and even postcollege. So we have some patients that have earned master's degrees and even working on PhDs, which is really exciting to see all of the things that these kids overcome and they're still able to reach all of their goals, which is our goal. When we walk into a patient's room, we want to know what their goal is, and then we come alongside to help them meet that goal.

Amanda Wilde (Host): How do you make that initial experience of meeting comfortable for children and their parents?

Courtney Emery: So the great thing about school is that school is normal for kids, so that's just part of their everyday. It's the job of a child, is to go to school. So when we walk in the room, we try to connect with them from a teacher perspective. We have that classroom experience. So we just walk in, we ask what school they go to, what grade they're in, and just start a conversation from that perspective and try to find common ground. We also have a lot of really great opportunities to do projects. And we wrote a grant a few years ago and we have some STEM activities where we can actually come in and do some schoolwork or do some projects and help kids create things while they're sitting in the hospital room or in an infusion room, so that helps to kind of break the ice and start having just organic conversations that we wouldn't necessarily get if we weren't doing something that was keeping their mind occupied. Just kind of building relationships and forming friendships is our goal.

Amanda Wilde (Host): Well, you said a kid's job is to go to school and your job is to be the school intervention specialist. Can you tell me more about what a typical day looks like for you?

Courtney Emery: Absolutely. Our typical day varies every single day. There is actually not a typical day for us. So Emily and I are the school intervention specialists. We do serve that gap between the school, the family and the medical team. So some days, we're in our clinic, we're in the hospital, we're meeting with families, we're doing activities with kids, we're building relationships and rapport. And some days, we're in the school setting. We actually attend either virtually or in-person school meetings. So there's a couple types of education plans, specifically a 504 or an IEP that a lot of our students have, and those all require meetings. So we'll actually go to the school with the parents and sit down and meet with the school personnel and talk through the medical side of things and how that can negatively impact school and give a very specific list of requests to accomodate difficulties that the child may have. So, if a child is undergoing chemotherapy treatment, they would have a weakened immune system. So we talk through what that looks like in the school setting and things that the school can do. So we are very involved in those meetings.

We also speak with the peers of our patients. So we will actually go to the schools and do a lesson with their class, whether that's a kindergarten class or a junior in high school class, we sit down, we talk to them, we answer questions. As friends of the patient, they have a lot of questions and they can be scared because this is scary stuff. So we want to answer as many questions as possible. So that's one of the ways that we can serve their families.

And then, we do a lot of paperwork. Like I said, there's a lot of requirements of the school. So that is put onto the physicians that they're asked to complete. So we help to facilitate that for our physician team, just to ensure that everything is done correctly and the school gets the exact information that they need to be able to best help this student.

Amanda Wilde (Host): So you prepare children, parents, teachers, and peers, to look forward to what it looks like when someone's going through treatment. How can you see that making a difference, especially with the peers of the child?

Courtney Emery: I think that one of the things that I do, before I talk to a peer group, is I talk to the patient. And I ask them, "What do you want your friends to know? Is there anything you don't want your friends to know?" And I always give a caveat, like we're never going to not be truthful. So if a child asks a direct question, then we have to answer that directly. But that being said, we want to make sure that I'm sharing things that the patient wants me to share and trying to keep confidential what they would prefer people not know. And then, it's been really great because when the patient goes back to school, or even when they have telephone calls with peer groups and things like that, they're able to just be kids.

What we were finding before we started educating the peer group is that the peers were nervous. They didn't know what to say. They didn't know what to talk about. And so, when we go out and talk to the peer group, we answer all these questions and then we wrap up by saying, "Your friend just wants to be a kid. They want to talk about all the things that you're talking about. They want to do all the things you're doing and just be a kid. So yes, they're going through this really significant battle. But at the end of the day, they just want to be a kid. So you be a friend to them, the same kind of friends you were before the diagnosis is the best thing that you can do." And so just having those conversations and being really honest with the peer group allows the patient to just be a kid and just be able to go back to school and do all of the things that a student and a child is supposed to do.

Amanda Wilde (Host): So communication is really key with all the parties involved.

Courtney Emery: Absolutely. Yes, communication is key.

Amanda Wilde (Host): I have two questions. What is DanceBlue exactly?. And what is the Golden Matrix Fund that I've heard of?

Courtney Emery: So DanceBlue is a student-led organization at the University of Kentucky, that culminates every year with a no sitting, no sleeping dance marathon that lasts 24 hours. The college students that are on the committee and that are a part of the organization fundraise all year. And they do many marathons throughout this state at high schools, middle schools and elementary schools, and lots of other places. They do a lot of community outreach and work. And throughout the years, they raised a lot of money. And so the Golden Matrix Fund is actually where that money is stored. And the Golden Matrix Committee oversees the spending of the funds raised by DanceBlue. So the school intervention program in the DanceBlue Clinic is fully funded by DanceBlue. So without the DanceBlue organization, we wouldn't be able to provide this level of service to the patients that we serve.

Amanda Wilde (Host): You mentioned that DanceBlue is student-led. In what ways can other students and non-students support DanceBlue?

Courtney Emery: So students can support DanceBlue by getting involved. There's lots of different ways to get involved. The easiest way is to be a dancer. Every dancer is involved throughout the whole year. And then again, they do the big dance marathon, typically in the late winter, early spring of each year. And non-students can support DanceBlue, they have a 5k every year, so doing something like that. They have silent auctions. They accept donations online. So just any way that you can financially or just physically support the students, encouraging the students. It's a lot of work that they do while they're also full-time students. So just any type of support to them is always appreciated. And the money that they raise provides a plethora of services in the DanceBlue Clinic. Actually, the clinic itself is called the DanceBlue Clinic because they funded a remodel for it and made it just a beautiful place for kids to come and receive their treatment. And then, there's lots of other services within our clinic that are funded by the DanceBlue students and by the Golden Matrix Fund.

Amanda Wilde (Host): that's really solid. What ages of kids do you serve?

Courtney Emery: So with oncology, we start serving kids around three years old when they could potentially be going to preschool. And we have served kids all the way into their late 20s that have been working on PhD programs. With the hematology kids, we actually can start a little bit earlier. Diseases like sickle cell disease are things that kids are born with. So typically, if they go to a daycare setting or things like that, they may need some support so we can support in those ways. But pretty much any child that has some level of school need can qualify for the services in our clinic.

Amanda Wilde (Host): You have a really special role. What do you like most about your job?

Courtney Emery: I do have a very special role that I'm very, very grateful to be in. And I think what I love the most about my job is the opportunity to take a really horrific time in a child's life and try to turn it for good, to help them to reach goals, to not stop dreaming, to just really focus on the future, so that they can get past this really hard time and step into really great time in the future.

Amanda Wilde (Host): You have a friend and an advocate in your school intervention specialist. Thank you, Courtney, for this enlightening conversation and everything you're doing to help children succeed in school and realize their full potential beyond.

Courtney Emery: Thank you so much. It's been so great to talk with you today. I really appreciate the opportunity.

Amanda Wilde (Host): For more information, call Kentucky Children's Hospital DanceBlue Hematology clinic at 859-257-4554. And that wraps up another episode of UK HealthCast with University of Kentucky HealthCare. If you found this podcast helpful, please share it on your social channels and be sure to check out the entire podcast library for topics of interest to you.

Thanks for listening to UK HealthCast, a podcast from UK Health. I'm Amanda Wilde. Be well.