It’s winter in State College, Pennsylvania. For thousands of Penn State students, alumni everywhere and hundreds of families of pediatric cancer patients, that means one thing. THON—what’s short for a very long dance marathon—will soon begin. This year’s event is scheduled for 6 p.m. on Friday, February 17th through 4PM on Sunday, February 19th.
THON is festive, but dead-serious in its mission, and phenomenal. In the last academic year, THON raised $10 million for Four Diamonds, a pediatric cancer charity affiliated with Penn State University and Penn State Health Milton S. Hershey Medical Center. The world’s largest student-run philanthropic organization involves almost every fraternity, sorority, club and sports team on campus.
Dancing for cancer may seem a crazy idea, paradoxical, and wildly inefficient as a fundraising scheme. But it’s become the thing to do, a good karma-generating phenomenon and year-round source of pride for the Penn State community. Since 1977, THON has delivered over $136 million for children’s cancer care and research at the Penn State Children’s Hospital. Since 1993, mini-THON events, mainly held in high schools, have raised an additional $23 million for Four Diamonds.
“After football, and commencement, it’s the biggest thing all year,” a shuttle driver told me when I arrived in State College last February to see THON. He spoke with pride.
Late that Friday afternoon, thousands of college students filed into the Bryce Jordan Center. They pumped energy into the indoor arena, brightening its wrap-around gray concourse, underground corridors and stadium floor with glitter and hope-smeared tops, tutus, sneakers, leggings, shorts, Greek letters, corporate logos, yellow and gold ribbons, wristbands, funny hats, bows, headbands with flowers, American stars and stripes.
Many entrants sported three letters, FTK, temporarily tattooed on a facial cheek or arm. At Penn State, students thon For The Kids, as in kids with cancer.
The Bryce Jordan Center, or the BJC—as it’s known around town—is named for a former Penn State president who, among other achievements, received a doctoral degree in historic musicology. The wide, curved building appears low, almost unnoticeable from a distance. It squats modestly, a few hundred feet from the taller, open-air Beaver Stadium, where football happens. Both structures are situated south and west of Mount Nittany, about a mile north of the main campus in central-western Pennsylvania. Locals call the region “Happy Valley.”
THON 2016 final line dance, view from the floor (photo by Michelle Bixby, courtesy Pennsylvania... [+]
“What these students are doing is tremendous,” said Dr. Barbara Miller. She’s a professor of pediatrics, and a physician-scientist, who heads the division of pediatric oncology at the Penn State Children's Hospital. Originally from Allentown, she graduated from the Penn State College of Medicine, trained in pediatrics at Duke, moved to Boston for a fellowship in pediatric oncology and returned to the Hershey region in 1986. She’s been running a research lab, and caring for kids with cancer, ever since.
When I met Miller in a lower-level, windowless room inside the BJC, she reminded me of hospitals, and of oncology. She’s a sensibly clad, serious woman. Her quiet demeanor exudes kindness. She smiled while speaking about her research. Investigations in her lab center on a molecule she calls TRPM2, otherwise known as the second member of the transient receptor potential cation channel of the subfamily M, a large protein that affects how cells respond to stress and die. On Saturday of THON weekend, she was cheering for the college kids.
Miller sits on the board of Four Diamonds, THON’s sole beneficiary. For children with cancer receiving care at Hershey, the fund covers what health insurance doesn’t. Families receive no medical bills. To receive benefits, the pediatric patients needn’t participate in THON activities. Anyone under age 22, with a malignant diagnosis at the Penn State Children’s Hospital, qualifies.
“No family should make a decision about treatment based on the ability to pay,” Miller said. Support from the charity eliminates the painful dilemmas parents face—like whether to sell their car, or house—to pay for expensive treatments. “I have seen so many families, and when you tell them the diagnosis, they cry,” Miller told me. “And when you tell them about Four Diamonds, they are so grateful that finances is something that they don’t have to worry about.”
The charity doesn’t just cover the cancer bills. It lifts the quality of care at Hershey by supporting salaries of extra staff, like psychologists, social workers and music therapists. And it’s boosted faculty at the Penn State College of Medicine, what otherwise might be a tough draw for academic physicians. “We’ve used it to recruit top researchers, investigators with multiple NIH grants,” Miller told me. In recent years, Four Diamonds has given millions for endowed professorships and research programs in pediatric oncology.
A source of some past concern about Four Diamonds and THON is that neither organization files 501(c) forms because they are affiliated with Penn State University. Four Diamonds reports that 91% of its receipts are spent on its mission, and only 9% are spent on administration. The organization provides some details and a summary financial statement here on its website.
An hour before THON started last year, 702 dancers sat on the floor of the BJC. Some stretched, in yoga postures. They chatted with members of the Dancer Relations Committee. That committee, one of 16 groups of hundreds orchestrating THON, monitors the health, hydration and general well-being of dancers over the weekend. Already, six would-be thonners had been sent home upon admitting symptoms of a possible virus. The risk of contagion spreading among the dancers—and among the Four Diamonds families in their midst—was too great.
To be sure, dancing might be defined loosely as it applies to the thonners. For 46 hours, there would be no sitting, lying down or sleeping. Between line dances, and occasional bursts of disco and Pulp Fiction moves, the college kids combat fatigue by walking, joining in games, like Uno, while standing at tables, eating, drinking non-alcoholic beverages, washing, taking photos, tossing balls and playing with pediatric oncology patients.
During THON, there’s no notion of commitment—or giving to charity—based on how long a dancer lasts. Rather, dancing for forty-six hours is a privilege, earned by past volunteerism.
“It’s symbolic,” a student told me. Most designated dancers are seniors at Penn State; getting to thon at THON is a coveted activity. Dancing slots are assigned through an immensely complicated set of rules having to do with fundraising in the previous year, for paired sororities and fraternities and for other types of campus organizations, like the sailing or biology club, after raising $2,500. Only then, and again for each additional $800 contributed, can student groups receive lottery tickets by which they gain chances to sponsor dancers.
Just before 6 p.m., Katie Mailey, a young woman with a broad smile and wavy, long orange hair, came on stage. She’s from Hudson, Ohio, an accounting major and executive director of THON 2016. “Are you ready to believe beyond boundaries and conquer childhood cancer?” she asked. The crowd roared back, affirmatively.
On countdown, THON began. Everyone rose. Speakers blared the theme song from Friends (“I’ll be there for you…”). The spectators began rocking and tilting human-sized alphas, zetas and phis to the music. The next song—in a very long list—was Marc Antony’s “Viva mi vida.” Students in the stands began dancing vigorously, more so than the designated thonners below who perhaps, and under advisement, were conserving energy. Many stood near fellow club or fraternity members, in groups with matching t-shirts, filling arena sections with distinct hues of purple, pink, orange, yellow, green and blue, rendering the effect of a giant, bouncy mosaic.
Some Four Diamonds families were staying at my hotel in State College. Their behavior didn’t stand out; the children seemed like other excited kids I’ve encountered while traveling in places like Orlando maybe pushing extra elevator buttons and skipping down halls, trailed by tired-looking parents. What marked these families were their THON-themed gear, Mardi Gras beads, Four Diamonds-themed sweatshirts—and that some of the children were bald.
At breakfast the next morning, a waitress greeted one table: “How are you doing? I remember you from last year.” She asked in a non-perfunctory manner; she seemed to care.
One purpose of THON is to raise awareness—among students and in the community—about childhood cancer. Pediatric tumors are rare conditions, happily unfamiliar to most Americans. Each year in the United States, 16,000 cases arise in people under age 20. Pediatric cancers account for less than 1% of all malignancies; they affect 1 in 200 families. Among U.S. children who survive infancy, cancer takes more lives than any other illness.
Some kids inherit a disposition to develop malignancy. But the overwhelming majority of pediatric cancers arise in the absence of a known cause, without a relevant genetic abnormality or family history. Cancer tends to take different forms in young children and teenagers, as compared to adults. Acute leukemia is comparatively common in kids, as are lymphomas and tumors of the brain, bone and kidney, and sarcoma.
The rarity of childhood cancer, while a good thing in itself, stunts research. Kids are not the same as adults; their needs differ. They’re more resilient, but vulnerable. A drug that’s safe in adults, with acceptable side effects, may be toxic in children. Conversely, young people may tolerate some treatments that adults can’t handle. Ethical issues—such as consent for treatment, typically conferred by parents of children up to a certain age, palliative and hospice care, social support—are distinct in pediatrics. For these reasons, separate clinical trials need inform the effectiveness and safety of treatments that might be given to children.
Yet survival has improved, steadily. Fifty years ago, most kids with cancer died from it. Today, most pediatric cancer patients live to adulthood. For survivors, learning how to manage the long-term psychological and physical effects of treatment is a constant and not-quite welcome challenge. For pediatric oncologists, figuring out how to minimize toxicity, and how to treat more effectively, remains a goal.
Saturday’s THON program felt long, and was. Mid-morning, members of Greek organizations—already nearing exhaustion—appeared on the stage. Brady Lucas, a Penn State sophomore and the 2016 THON chair for his fraternity, Phi Kappa Sigma, spoke of his experiences with leukemia as a Four Diamonds child. Fraternity and sorority leaders gave a “THON history” dancing tour through the seventies (ABBA, disco), eighties and so forth.
A man whose daughter, Penn State student Vitalya (Tally) Sepot, died in a tragic car accident while returning from a THON-related activity last fall, gave a speech. Outside, bereaved families of children who died from cancer discharged white balloons, tied with yellow paper ribbons, into the air.
In early afternoon, college students cut long locks of hair, FTK. Some Four Diamonds children participated in a program billed as a fashion show. Teenagers who had cancer, including several current and future Penn State students, sang or otherwise performed. Younger children, infants and toddlers, came on stage holding hands, or being carried, by college students, beaming. The Nittany lion, Penn State’s mascot, played, as did music from The Lion King.
Meanwhile on the dance floor, energy waned. Most thonners didn’t know what time it was. There were no visible clocks inside the BJC; an oft-cited rule among the students prohibits time’s disclosure to the dancers. “Activities to distract,” like spin-art and board games, stimulated a few. Meanwhile, Four Diamonds kids crossed and skipped around the floor, almost freely, cheerfully squirting water guns at thonners, dancing with thonners, getting “rides” from thonners, apparently having fun. Few of the dozens of beach balls provided flew around; mostly they littered the BJC floor, along with many empty water bottles.
By early evening, hundreds of students, many toting posters and blankets, lined up outside, waiting to enter. The thick human queue extended toward Beaver Stadium, in darkness. The arena had reached capacity, with over 15,000 participants. For each admission, someone had to leave. Most of the Penn State students arriving that night would remain, with friends in a club or fraternity, until the marathon’s end. They would pull a collective all-nighter, FTK.
At 9 p.m., a pep rally began. Devon Still, a professional football player and Penn State graduate, whose daughter, Leah, received treatment for a stage 4 neuroblastoma and was doing well, raised the crowd’s spirits. He, a very large man, came on his stage with his tiny and smiling daughter. She, at five years, wore a purple and white tutu, a shirt with a pink heart, bows in her hair and a huge missing-front-teeth grin. “When I was participating, I didn’t really understand the magnitude of what THON does for families,” Still said, referring to his college experiences. The football player handed the microphone to his daughter.
“Keep dancing,” Leah commanded. Next, she led the crowd in a Penn State cheer.
Soon after, sports teams emerged from gates onto the dance floor for a late-night dancing competition. Football won. But my favorite was the men’s soccer team’s performance. Those guys donned neon-colored headbands, midriffs of fluorescent blue, yellow and pink, and bright shorts or tutus. They came on stage kicking, and then all but one took to the ground. They lay on their backs, gently lifting straight sneakered legs to the tune of An der schönen blauen Donau. After a minute or so, they rose and danced like ballerinas. Some waltzed in pairs. When the music shifted to a quick beat, they jolted, shook their hips, twerked and formed two dancing circles around a couple, two men at center, who embraced to a song from Disney’s High School Musical.
Four Diamonds takes its name from a story by Christopher (Chris) Millard, a boy who died from cancer at age 14, in 1972. Chris had a rhabdomyosarcoma, a tumor that ate into his soft palate and throat. Charles, a tall and mild-mannered man accompanied by his son-in-law, walked slowly and spoke deliberately. Throughout the weekend, he could be spotted in BJC corridors, stopping to chat with Penn State students and Four Diamonds families. “Grieving is hard,” he told me, before launching into discussion about the work of Elisabeth Kübler-Ross.
Chris’s cancer diagnosis came when he was in the sixth grade, in 1969. For most of three years, his parents drove and flew back and forth between their home in Elizabethtown, Pennsylvania, and the Dana Farber Cancer Institute, in Boston, where Chris received the bulk of his treatment. Chris’s younger sister was in grade school. “At some point, the doctors in Boston recommended that we come closer to home,” Charles recalled. The message, however indirect, was this: Chris’s treatments were no longer helping. There was nothing left to try.
The family lived nine miles from Hershey, where the boy was hospitalized for 45 days until his death. It was a young facility. The Penn State medical school entered its first class in 1967; the hospital first opened its doors to patients in 1970. There was no pediatric oncology unit, nor a separate children’s hospital. Kids were treated by, and with, adults. In the year after Chris’s death, Charles and Irma set up a small foundation to support local care for sick children. Their intention was to assist families. “We didn’t think people should have to drive hundreds of miles to Boston, or to Philadelphia,” Charles said. “It’s especially hard on young parents. Juggling work with a child in the hospital, you don’t know how to handle the other sibling.”
Chris’s tale, a remote antecedent to Hope Lab’s videogame That Dragon, Cancer, involves a knight, Sir Millard, who falls into the grip of a rope-turned-snake flung upon him by an evil sorceress. The serpent winds around the young knight’s body, tightening its grip, sapping his energy and rendering him captive. To be freed, Sir Millard must accomplish four tasks, each yielding a diamond, and representing a needed quality: courage, wisdom, honesty and strength. In the story, Sir Millard achieves each of his missions, acquires four diamonds and transforms the sorceress’s fortress into a cheerful palace, now his, filled with animals and birds.
The Millards now live in Washington State. Charles plans to fly in for THON this February; it will be his 40th time attending. It was in 1977 that the interfraternity and pan-Hellenic (sorority) leadership at Penn State cemented the relationship between the annual winter dance marathon and pediatric cancer care in Hershey.
Since its inception, Four Diamonds has aided families of some 3,500 pediatric cancer patients at Hershey. “It’s grown beyond our expectations. It still serves our original ideas, that it covers all expenses. It goes to research too, and the research could help everybody,” Millard said. “It’s not just Hershey, really. It’s spread beyond Hershey. And that’s awesome, when you think about it.”
On Sunday morning of THON weekend last year, I returned to the BJC for the final stretch. THON was winding down. Inside, the corridors were quieter. Some of the concessions had shuttered, others had run out of items, like pizza without pepperoni. Students in red Security Committee t-shirts, manning section entrances, appeared dazed. Around noon, thonners perked up with a series of line dances.
The mood shifted yet again when Blake Ament, director of the Family Relations Committee, introduced the “Family Hour,” yet another THON tradition. What followed was a series of mothers, fathers, whole and missing-one families with kids, coming out and telling of their experiences with childhood cancer and what THON meant to them. Their images were displayed on jumbotrons. The speeches shifted, over the course of an hour, from tales of survivorship to “celebrations of life”—emotional, loaded and true stories about children who died.
By this point, all of the kids—the 15,000 college kids who filled the arena—were standing. They interlocked arms behind the backs of fellow students, in adjacent seats along rows, swaying slowly while parents spoke and mellow music, like “Sleep at Last” and “Somewhere Over the Rainbow,” played intermittently. Strong-looking young men, athletes apparent, dabbed their eyes. A few girls sobbed. Men with video equipment and large cameras, stationed in the press row, were crying quietly. I could see thonners down on the floor, and children who appeared to have cancer, and one in a wheelchair, being comforted by college kids who were not obviously crying, crying. I cried, too.
Next, a live band, Go Go Gadget, came out playing electronic funk music, shattering the sadness. On the floor, people started dancing in every way, twirling and doing the backstroke swim and shaking fluorescent necklaces. As if out of nowhere, Star Wars lightsabers appeared in thonners’ and their paired sorority and fraternity sisters’ and brothers’ hands. Girls in pairs and groups, boys with boys, kids with cancer with their parents and siblings and Penn State students on the Dancer Relations Committee were moving joyfully, rhythmically, back and forth, looking up at the spectators who, with coordinated moves and their hands and lit smartphones or lightsabers in the air, were cheering them on.
During the final 2016 line dance, 10 minutes before THON’s end, there was so much noise and energy, the BJC seats shook. It felt as if there’d been an earthquake under Mount Nittany.
On countdown, at 4 p.m. the thonners sat down. Some rolled on the floor. The THON 2016 executive committee—17 Penn State students who had dedicated much of their time, all year to this event—came on stage, along with the mascot lion. They would display the amounts donated by each campus organization, which compete in that regard, on the jumbotrons, and raise the year’s total on poster-boards, one giant digit or dollar sign, over each of their heads. When the numbers popped up: $9,770,332.32, everyone clapped and stood, offering a giant nod of collective appreciation, a community thanks, for the money collected, FTK.
A palpable sense of disappointment hung over the arena. The sum fell around $4 million below the prior year’s total; the drop couldn’t be ignored, and was the subject of questions at a post-THON press briefing and articles in Penn State’s Daily Collegian. Some attributed the drop to cancellation of two, out of three, planned “canning” weekends. In a note to the community posted in November 2015, Katie Mailey referred to safety concerns about student, and to increased “reports from both parents and students about volunteers being pressured to fundraise for THON.”
It could be, one has to consider, that not everyone at Penn State and the surrounding region wants to give so much for the kids. Students may have other priorities, like homework, or other, preferred charities. The Pennsylvania and greater U.S. economy, unmentioned, remains sluggish; parents’ and neighbors’ lack of disposable income may be a factor in a lower yield.
Yet I couldn’t understand the let-down, as if the student-run philanthropic organization hadn’t done enough FTK, for the kids with cancer. They had done so much: $9.7 million is a huge amount of money, raised on one university campus so far in that year. Clicking to give a donation, to support a cancer charity, or any charity, is easy. It’s efficient and, truth be told, less dangerous than THON. But I’m not convinced that the process of writing a check, or giving money through an app or text, is as helpful, or good, as is the act of giving part of oneself: time, physical effort and being part of the community.
Getting to know pediatric cancer patients and their families, if only transiently, and being mindful of their woes, is more than happens on many college campuses. I was blown away by what I saw and heard, one weekend last February in State College, Pennsylvania.
The theme for THON 2017 is “Igniting Hope Within.”
This year’s will be the 40th dance marathon at Penn State to benefit the Four Diamonds. Since 1977, the event has expanded and been imitated. Around the country, mini-THONs—at some 260 high schools and a few middle schools—have sprouted up in Pennsylvania, Maryland, Virginia, New York, New Jersey, Connecticut and Nevada.
Penn State alumni chip in, too. Next month, thousands will attend THON-viewing parties around the country. With a vast undergraduate student population, over 40,000 on the main campus alone, alumni create a powerful network.
“Alumni get so excited about it,” said Monica Bishop. She’s a 2015 Penn State graduate who’s active in the Nashville chapter. She majored in communications and now works for the Deeter Gallaher Group as a media strategist. “We’ve been ramping up our THON activities,” she told me by phone.
“I just love the passion about THON,” Bishop said. “People love it,” she said. “Sometimes we hold events and people from other universities, like Vanderbilt, drop in and want to give,” she said.
Bishop, now 23, has been dancing or otherwise fundraising for the Four Diamonds since she was a teenager. She's from Mechanicsburg, Pennsylvania. “It’s just about 20 minutes from the Penn State Hershey Medical Center,” she said. During high school, she organized in mini-THONs. In college at Penn State, Bishop volunteered for the THON communications committee for three years.
“THON prepares you for the workplace,” Bishop said. “For everyone that’s involved, it’s a huge commitment,” she said. “You’re doing something that you absolutely love, but you end up putting more into it than you ever expected.”
In Nashville, the Penn State alumni association has some 400 members; approximately 140 actively participate in events, Bishop told me. In fall they hold football-watching parties, often in bars, and occasionally elsewhere. On Sunday February 19, they’ll gather to watch the final three hours of THON by live-streaming in a building that houses the Junior Achievement organization.
“People used to think of Penn state and then football. The THON organization has changed that. Now if you say you went to Penn State, they think of Four Diamonds, they think of THON, they think ‘For the kids.’”
