Ask Us Anything About… THON™ and Four Diamonds

Description – The video begins inside the infusion room entrance of the Penn State Children™s Hospital. Three individuals are standing in front of a mural type wall that is a large photograph of Penn State students. The students in the photograph are holding their hands in the air making the symbol of a diamond with their fingers to represent, Four Diamonds and THON. The three individuals standing from left to right be, Dr. Craig Hillemeier, CEO of Penn State Health, Dean of Penn State College of Medicine, and Senior VP for Health Affairs at Penn State, Suzanne Graney, Executive Director of Four Diamonds and Scott Gilbert.

Scott Gilbert – Live from inside Penn State Health Children’s Hospital, welcome to Ask Us Anything About THON and Four Diamonds. I’m Scott Gilbert. This Friday on the campus of Penn State University, hundreds of Penn State students will get on their feet and they will dance nonstop. They’ll be on their feet for 46 hours as they dance for a cure to cancer. It’s knows as the Penn State IFC Panhellenic Dance Marathon, THON for short, and here to talk with us about how the proceeds from THON are put to good use right here at Penn State Health Children’s Hospital, I have Suzanne Graney, Executive Director of Four Diamonds. Thank you for being here.

Suzanne Graney – My pleasure.

Scott Gilbert – And, Dr. Craig Hillemeier is CEO of Penn State Health, he’s Dean of Penn State College of Medicine, and Senior VP for Health Affairs at Penn State. Thanks for being here, Dr. Hillemeier.

Dr. Craig Hillemeier – Good to be here, Scott. Thanks.

Scott Gilbert – Alright. Let’s start by talk about the event itself. I know both of you have been many times. Tell me about the excitement, the energy in the room up there at the Bryce Jordan Center. What is it like? How can you explain to someone who hasn’t been there?

Suzanne Graney – You know, somebody recently described it like the Grand Canyon. If you see a picture or you hear about the Grand Canyon, you get an idea what it’s like, but until you’re really there, you don’t fully get it. I think probably the best description is, it’s the largest display of human kindness I’ve ever gotten to witness in one place. There’s a spirit of kindness and hope and love that just envelops everybody in the Bryce Jordan Center for the entire weekend.

Dr. Craig Hillemeier – Yeah, I think, I think it’s the energy that one feels when you participate in that, and you look, and you’re part of the crowd. You just realize how much energy is out there. It’s one of the most win-win things that we see. We always look at things which make the people who participate in it feel better and better, and this does that, and it also very much benefits the children who have cancer, and the research that we’re doing to try to conquer pediatric cancer, so it’s really one of the most fantastic things that I’ve had an opportunity to be associated with.

Scott Gilbert – Now, let’s talk about the fact that the sole beneficiary of THON is Four Diamonds so, again, that money is put to good use here on this campus, and we hear the term Four Diamonds family a lot. Suzanne, what does that mean? What are the criteria that people need to meet to become a Four Diamonds family here?

Suzanne Graney – The criteria is simple, although it’s not criteria that anybody wants to have to meet. It’s that you’re a resident of Pennsylvania, that your child has been diagnosed with cancer under the age of 22 at time of diagnosis, and that you’re being treated here at Penn State Health Children’s Hospital.

Scott Gilbert – And, there are a lot of services here at the Children’s Hospital that benefit from THON, in addition to that direct patient care, but then all go back to helping the families. Right, Dr. Hillemeier?

Dr. Craig Hillemeier – You know, absolutely. I mean, I think you can add up 24 different types of specialists we have that work with our children and families that have counselor, from social workers, to physical therapy, to occupational therapy, to play therapy, to music therapists. I mean, that’s one of the biggest things that they see, is when the guitar comes in the room, you can see the smiles come out. And, it really is that that lets us provide an exceptional experience for those children and their families who are struggling to conquer cancer.

Scott Gilbert – You’re watching Ask Us Anything About THON and Four Diamonds, live from Penn State Health Children’s Hospital. I’m Scott Gilbert, along with Suzanne Graney and Dr. Craig Hillemeier. We welcome your questions in the comment field below this post. We can pose them to these two folks live, or even if you’re watching this on playback, feel free to pose your questions, and we’ll make sure we get you some answers, as well. Feel free to just post your exciting comments, too, your reflections of THON, if you’ve been up to THON before, things to share with our audience. I’d like to talk a little bit about research, and how research is funded through THON, and that is the only way to a cure, so it’s so important.

Suzanne Graney – It’s really important. We talk about the equation for hope, which is the combination of world-class clinical care, care for our children, transformative philanthropy, which is exactly what THON is, needs to be combined with life-saving research in order to have hope for a cure. That combination of all three are vital, so there has to be a focus on research. That’s where we will find new ways to treat cancer, new discoveries of how to use drugs differently, and how to boost the survival rate so that we can save every child.

Dr. Craig Hillemeier – Yeah, I think if you look at children with cancer, we now do a lot better than we did three or four decades ago. I think almost four out of five children that have a diagnosis of cancer now survive the cancer, but of course, that means that one out of five do not. It also means that the four or five that we treat with cancer, we need to come up with ways that treat that cancer that have less morbidity associated with them, less long-term side effects associated with the type of treatment we have. That’s why something like THON, which is really for the kids and focused on conquering pediatric cancer, just gives us so much hope and energy around here as we do our business.

Scott Gilbert – Fantastic. And, Dr. Hillemeier, you touched on that concept of morbidity, some of those long-term side effects that the existing treatments for cancer can have on children, and Suzanne, that’s part of the reason for the Survivorship Clinic we have right here in this building, right?

Suzanne Graney – That’s exactly right. Sadly, we know that two-thirds of the children that survive this have a likelihood of developing some type of complication that came because of their treatment. Those types of long-term complications need to be watched long after the patient is done with their standard cancer treatment. So, the Survivorship Clinic is making available an appointment for all of our children who are leaving their oncology care to have follow-up scans once per year to make sure that they’re keeping an eye on any of the complications that might arise from their treatment. They’re also, as they transition out of being children and into being adults, they’re given an individualized medical plan as they transition out of oncology and into a primary care physician, and their own responsibility for their care, as they become 18 or older, for them to know what actually happened, what were the risks that were associated with the type of treatment they had. They might have been too young to know what the exact course of care was, so that individualized plan gives them an opportunity to be proactive adults in watching their own health care, and keeping their eyes open for those complications.

Scott Gilbert – You’re watching Ask Us Anything About THON and Four Diamonds from the campus of Penn State Health Children’s Hospital. I’m Scott Gilbert, along with Suzanne Graney and Dr. Craig Hillemeier. We welcome your comments and your questions below this post. We also encourage you to share this post, if you find this to be an exciting topic, and really, who doesn’t? THON is just such an exciting 46-hour period of time, and it really marks the culmination of a year of effort up there at University Park, doesn’t it?

Suzanne Graney – It does, and this year in particular is really special. This is the 40th anniversary of the partnership between THON and Four Diamonds. Both organizations existed for five years before we became partners, so it’s not our 40th birthday, or anniversary, for either organization, but it’s the anniversary of the 40th year that we have been dedicated partners working together, finding ways to conquer childhood cancer, and supporting all of the families who are being cared for here in our Children’s Hospital.

Scott Gilbert – And, we’re marking that anniversary in some interesting ways, including 40 faces on the Four Diamonds website, right?

Suzanne Graney – Yeah, there’s a great campaign that’s online. You can find it on THON social media channels and Four Diamonds. You can also find it at fourdiamonds.org, and you can see some of the people that were instrumental in putting this partnership together between THON and Four Diamonds, and those that helped to keep it strong over the course of 40 years.

Scott Gilbert – Dr. Hillemeier, what is it like for you to look back on, I mean, 40 years of a partnership here, because before you were in your current position, you oversaw the Children’s Hospital here, so you know the subject matter very well.

Dr. Craig Hillemeier – Yeah, it’s been really exciting to see this evolve over time, and to see the students every year pick up the mantle from the previous year, and to have the energy and the enthusiasm to make it a successful year. You know, we always say, it’s really about the relationships that are formed, and it really is the relationships between the Four Diamonds families and those students, who are really spending all year trying to figure out how to support those families, that actually culminates in THON, that I think really makes it what it is today. It’s really a pretty exciting thing.

Scott Gilbert – And, the students from THON, those who take part, are a presence right here in the Children’s Hospital throughout the year. We see them wearing their t-shirts and interacting with patients. It’s not just up at that event, although there is plenty of it up there, but they’re here throughout the year, too.

Suzanne Graney – Yeah, we love that we have the opportunity to bring the students actually to our hospital, to let them see what is the impact of all of the work that they’ve been doing. They get an opportunity throughout the course of the year. We host scheduled tours for these students, and they are from students at University Park, but also from all the commonwealth campuses, have an opportunity to sign up to come on a tour. And, we’re able to introduce them to a family, and let them hear a personal story about how they’re being helped because of Four Diamonds and THON. They get an opportunity to go into one of the research labs and hear from the scientists about what a difference it is that they’re making, and how that funding helps to sustain what they’re doing in how they’re looking for new ways to treat childhood cancer. It gives all of those young, vibrant college students an opportunity to, hands-on, see what’s happening here at the hospital, and what they helped to make happen.

Scott Gilbert – What a fantastic opportunity for them, and for families and patients, too, I’m sure.

Dr. Craig Hillemeier – Oh, absolutely, and I think one of the things that people oftentimes don’t really understand is, it’s not really just the 700-plus dancers who really put out to make THON so special. There are literally many thousands of students, each of whom spend over hundreds of hours making this whole THON successful.

Dr. Craig Hillemeier – Looks like we’ve got a question.

Scott Gilbert – We do, indeed, and we invite you to add your questions to the comment field, as Madison has just done. Madison’s asking, “What are some of the things that you’ve been researching and developing recently?” So many things happening here behind the scenes.

Dr. Craig Hillemeier – Well, it’s amazing and, you know, the dollars that come through THON to Four Diamonds primarily make sure first of all that patients and families have all of their needs taken care of, and that we provide them exceptional care. But, those dollars over and above that go to provide for the research, which is going to conquer pediatric cancer. And, much of that research actually focuses on those cells that cause the cancer, that in some ways seem to act as if they’re immortal. They don’t have the normal type of senescence, the normal type of life cycle that eventually dies, as normal cells do, and that’s why then they take over and they oftentimes cause problems, then, as cancer. And so, much of the research that we have going on tries to look at what we call the molecular mechanisms of why those cells continue to grow and grow and grow, and eventually result in what we call cancer. And then, how to figure out how to interrupt those mechanisms that allow those cells to go on. And, it’s really exciting, some of the work that we’re doing, in terms of the molecular mechanisms that make the DNA go on and replicate, that cause all of those intracellular signals that result in cell growth, to not sort of go through their normal cycles, but they just perpetuate themselves. And, we have some really exciting things happening in that area.

Scott Gilbert – It is exciting work, and it’s work made possible by those who are dancing up at State College this weekend.

Suzanne Graney – It’s true. One of the other projects that is really simple to understand, because this is all really complicated science, Dr. Sunny Dovat is working specifically in high-risk leukemia, and he is looking at a particular gene. You know, all of us have genes that can turn on and off, depending on how they’re stimulated, but the gene that he’s looking at is called Ikaros, and it’s believed that if we can figure out how to turn on and off Ikaros, we could figure out how to turn on and off leukemia, which is just startling to think that we’re that close to having identified the gene. Now, it’s figuring out how to manipulate it, but it gives hope to all of us that we’re close to finding answers that scientists have been looking for for centuries, or generations, at least.

Scott Gilbert – Absolute. Very exciting. You’re watching Ask Us Anything About THON and Four Diamonds from Penn State Health Children’s Hospital. Thank you for the questions and the comments so far. Our next comment, or I should say question, comes from Joni. Joni is wondering if there have been any positive outlooks for the future in making childhood cancer safer, fewer long-term side effects. I think she’s talking about that morbidity issue, and the fact that some of the treatments, I guess you could say that they cure cancer, but down the road, the patients live with those long-term effects.

Dr. Craig Hillemeier – So, as Suzanne pointed out, many of the patients who survive pediatric cancer end up having difficulties later on, and that’s why it’s important that we follow them, but the real answer to that problem is to try and figure out why they have those problems. And, there’s some really exciting understandings about individual susceptibility to the medications, because not all of these medications are going to impact each individual the same way. So, understanding the various molecular mechanisms and enzymes that individuals have to deal with the particular mechanisms directly impacts the toxicity or side effects they’re going to have. So, if we’re able to use the terms precision medicine or personalized medicine to understand how the individual is going to respond to that therapy, we can then better prepare a therapy, which will minimize the side effects and still maximize the effect against the cancer. So, that’s probably one of the biggest things that’s come about in the last 5 or 10 years, is understanding that not all of the medicines that we use will have the same side effects on everyone, and trying to individualize that therapy. We’re also getting a lot better in terms of monitoring the side effects during the actual therapy that might then go on to produce long-term toxicity or side effects. So, it’s a really good question, and I think there’s a lot of really good work so that we have less, we use the term morbidity, less morbidity associated with these medicines in the long term.

Scott Gilbert – We mentioned a couple websites. I want to throw a couple things out there, because as the energy ramps up heading into this weekend, you have some more opportunities to learn even more about THON and Four Diamonds, and that connection that’s been in place for 40 years, including a television program this Friday. It’s called “Good Day PA!” You can catch it at 12:30 p.m. in the Harrisburg area on ABC 27, that’s WHTM-TV. That is at 12:30 on Friday on Good Day PA! We also encourage you to check out thon.org/webcast. If you’re not able to make it up to State College, or even if you’re only up there for part of the weekend, and want to see more, including the big reveal at 4 p.m. on Sunday, that’s a great way to check it out online. It’s always, and that’s a student-run production, as well, too.

Suzanne Graney – It is. There’s a group called 46 LIVE, they’re all communications students from the College of Communications, that keep that livestream going, and they produce all of the content that’s on there. It’s a huge undertaking, but we know that there were more than 100,000 people that logged in to watch live at some point during THON weekend last year. We’re certain that it will be just as compelling, and we hope as many people log on. We also, I wouldn’t be doing my job very well if I didn’t encourage people to also use thon.org to make a donation and be part of that big reveal that happens at the end, and help THON be successful. And, when you’re helping THON be successful, you’re helping Four Diamonds and our Children’s Hospital be more successful in how we’re able to treat children and continue to look for a cure.

Scott Gilbert – Fantastic. Suzanne Graney, Dr. Craig Hillemeier, thanks so much for being part of this interview today.

Dr. Craig Hillemeier – Thank you.

Suzanne Graney – My pleasure.

Scott Gilbert – Thank you for watching, and we appreciate the questions, which, as we mentioned before, if you’re watching this interview on playback, feel free to add your questions or your comments below. It’s not too late. We could even get some answers to those questions, if you’d like, after the fact, and as time goes on, because we know a lot of people check these videos out afterward. So, thank you so much for watching. Thanks again to my guests, and we appreciate you watching Ask Us Anything About THON and Four Diamonds, from Penn State Health Children’s Hospital.