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THON’s family relations committee fosters a community of support for young cancer patients and their loved ones

by on February 01, 2019 10:03 AM

“For The Kids.”

That simple phrase permeates almost every aspect of Penn State’s THON. You’ll see it on t-shirts and posters, you’ll hear it in the annual line dance lyrics, and you’ll find it abbreviated as ‘FTK’ in just about all THON-related correspondence. Those three little words are so important to the largest student-run philanthropy in the world that the organization has trademarked them.

“The Kids” are the Four Diamonds pediatric cancer patients at Penn State Children’s Hospital in Hershey, and they are at the core of THON’s mission to provide emotional and financial support and to enhance the lives of children and families impacted by childhood cancer.

The financial support aspect has been well publicized, and rightfully so, because the $157 million raised by THON since 1977 has had an enormous impact on past, present, and future cancer patients by paying for research, specialty care providers, and the cost of treatment-related expenses that Four Diamonds families incur.

The emotional support element may not be as well-documented or as easy to quantify, but it is just as vital to THON's purpose – and the family relations committee exists to help the entire THON community uphold that responsibility.

“The emotional aspect of THON is really what makes THON so special,” says Penn State senior Lizzy DeMarshall, the 2019 family relations director. “Just being there for these families when sometimes they’re going through this dark part of their lives – many families will say this is the most amazing part, to have all of these bright, enthusiastic, and encouraging college students there to support them. It just gives them a lot of hope.”

Blair and Brianne Evans of State College were connected with the family relations committee after their daughter, Aubrey, was diagnosed with Wilms tumor, a form of kidney cancer, in January 2018, just before her second birthday. Following surgery to remove the affected kidney, she finished chemotherapy treatments in August and is now in remission.

“When we were in the hospital for the first three days, we were disoriented and overwhelmed,” Blair Evans says. “We were set up with a social worker in Hershey through Four Diamonds who helped us handle all the paperwork and supported us in a lot of ways. … She asked if we wanted to be a part of THON. But because treatment was quick and intense, we didn’t really get involved until after.”

When they were ready, the social worker put them in touch with senior Amber Shojaie, one of two “new family contacts” on the family relations committee.

“My role is to welcome these families into a whole new support system that they didn’t even know they had,” Shojaie says.

The 23-member committee facilitates this support system in several ways: by pairing families with student organizations through its “adopt-a-family” program; by holding THON-related events all year long; and by offering special opportunities for families during THON weekend in February.

Adopt-a-family program

The adopt-a-family program has paired more than 300 families with all kinds of student organizations, including fraternities and sororities, general interest groups, club sports teams, and others, DeMarshall says. The groups develop relationships with their assigned families and stay in touch throughout the year. Many of these relationships last for years, she says.

The Arnold Air Society organization has the longest standing pairing, DeMarshall says.

“They’ve been paired with a bereaved family for 25 years. They are so close with this family and they do so many amazing things to honor their child and to let them know that their child will never be forgotten,” she says. “The family stays in touch with the students after they graduate and they go to their weddings. … It’s really awesome that every four years it’s a fresh group of students, but they keep those relationships going.”

Now a senior, it was DeMarshall’s freshman-year experience as a member of Club Cross Country that sparked her passion for THON and family relations.

“We were paired with two families my first year, and I fell in love with the mission. We knew every event we held, every dollar we raised, was to support those families. We just became so close,” she says. “During my sophomore year we added a third family, and the older families became a different kind of support system for them, because they were the only people that truly knew what they were going through. It was really cool to foster that friendship between the families.”

The Evans family – who welcomed Aubrey’s baby brother, Ellis, in July – have been paired with the Penn State cheerleaders through this program. Blair says cheerleaders have visited them at home, and Aubrey loves to track them down at various sporting events. Aubrey now considers the cheerleaders and the Nittany Lion mascot to be her friends, and she likes to wear her very own Penn State cheerleading outfit – “I have shakers!” she exclaims.

Year-round events

The first THON-related event the Evans family attended was the State College Mini-THON. Mini-THONs are modeled after Penn State’s THON and are held by high school and middle school students throughout the state to raise money for Four Diamonds. They’re just one example of official year-round events that the families can attend.

“We really focus on year-round support,” DeMarshall says. “We don’t just concentrate on THON weekend and stop after that, because we know these families’ journeys last all year long.”

The family relations committee plans a Harvest Day event in early September, complete with hayrides and a corn maze at a farm near Hershey.

“It’s one of the best days. It’s a chance for the family relations committee to meet all the families and to kick off the year, and to get the families together to meet each other,” DeMarshall says.

Other special events include a THON 5K at University Park in the fall, a “100 Days ’Til THON” event in Hershey for families who are not able to leave the hospital, and a huge carnival in the White Building at Penn State in December. In addition, most of the Penn State athletic teams host THON-themed games during their seasons, when proceeds from tickets sales may go toward THON and when the Four Diamonds kids are often invited to run out onto the field or court with the teams and to interact with them in other ways.

“We just try to make it very special for them,” DeMarshall says. “The most awesome part of having all of these events for them and making the kids feel so special is that this is what they’ll remember when they look back on their journey with cancer. They’ll have these really fond memories of THON and all the fun that they had, and not the dark memories. That’s what we try to give them.”

THON weekend

Of course, the main event is THON weekend at the Bryce Jordan Center, which will take place February 15-17 this year. The family relations committee works hard to make the families feel comfortable and to keep them entertained during the 46-hour event. They are welcomed onto the event floor, where they interact with the dancers, offering them another opportunity to bond with members of their assigned organizations. They also can participate in a kids’ talent show and a fashion show on stage during the weekend.

For a fun change of scenery, family relations also plans adventures outside of the BJC for the kids during the weekend as part of THON’s Explorers program. Families can choose from 16 different activities, including horseback riding, visiting a firehouse, creating music in a recording studio, and hanging out with Penn State football players in the Lasch Building.

Back inside the arena, families can relax in the family lounge or visit the lively kids’ lounge to release some energy when they’re not interacting with dancers on the event floor. A “family feature” hallway on the floor level is papered with handmade posters about each THON family.

“That’s a really cool way to honor the families, and it also helps the dancers when they’re at a low point to be able to walk through the hallway and read about these families and remember why they’re there,” DeMarshall says.

“A big part of our role as family relations is to remind the entire THON community why we’re here, and that everything we do at THON – whether it’s cleaning the BJC or holding a rope to keep everyone safe or whatever our job is – it’s all important for the kids. We also want to inspire people.”

A big dose of that inspiration comes from Family Hour, which takes place during the final four hours of THON. Three families address the crowd to tell them about their experiences with Four Diamonds.

“That is so special,” DeMarshall says. “Then we have a “Where are they now?’ video highlighting all the survivors and their accomplishments. And then we show a ‘Celebration of Life’ video honoring the lives of all of our angels. It’s all just very emotional and impactful, and it brings everyone back to why we are there.”

This will be the Evans family’s first visit to THON, but they say they’ve already benefited from their involvement with the organization as a whole.

“It’s been amazing. One benefit has been getting connected with other families,” Evans says. “For us, our families live far away, and in the post-treatment period you don’t always have tons of support. But through THON, you get connected to other families through events, and you get that support because everyone is a cancer family.

“The other thing is, these students are awesome. They may get a lot out of their involvement themselves, but certainly I think the families benefit a huge amount by this committee. Look at Aubrey—she gets to hang out with all of these cool young adults, and her confidence has skyrocketed. They take an experience that would otherwise be a limit to someone’s development and turn it into an asset. I can’t say enough positive things about them.”

According to DeMarshall, the feeling is mutual.

“It’s been absolutely incredible to see how much the families can impact us, and also how grateful they are for THON,” she says, “whereas we’re the ones that feel so grateful to know them and to be able to pour our hearts into this organization. It’s just been such a blessing.”

 

Karen Walker is a freelance writer in State College who participated in THON as a Penn State student.

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