Since partnering with the Four Diamonds at Penn State Hershey Medical Center, THON has assisted more than 4,000 families in their battle with pediatric cancer.
During the emotional waning hours of the 46-hour Penn State Dance Marathon on Sunday, the children and families who have been supported by THON and the Four Diamonds in their fight against the disease took center stage. Each family in attendance was individually recognized, Four Diamonds children past and present were highlighted, and three families shared their personal stories about battling pediatric cancer and the light that THON has brought into their lives.
Lily Jordan Family
It was five years ago that now 17-year-old Lily Jordan was diagnosed with a rare bone cancer. The Camp Hill teen has been on and off treatment ever since, undergoing countless surgeries, treatments and relapses.
‘To be perfectly honest I don’t think I can come up with the words to describe how much I’ve lost,’ she said.
When she was first diagnosed, like so many other pediatric cancer patients at Penn State Hershey, Jordan was quickly paired with a THON organization that would support her throughout her cancer journey. The Jordans were matched with the Penn State CrossFit Club.
Jordan joked that she wasn’t sure what to think because she thought the students would be ‘a bunch of meatheads.’
‘They were, but we still love them,’ she said, bringing laughter from the crowd and the CrossFit Club members who joined her and her family on stage.
‘In the midst of all the fear and loneliness that comes with cancer Four Diamonds gave me what quickly turned into a second family,’ she said. ‘It’s truly been a gift.’
One of those CrossFit Club members, and a dancer in THON this weekend, Hannah Canil, decided last year to buy tickets for Jordan to see the Jonas Brothers in August at Hersheypark Stadium. It was a gift that would lead Jordan to a measure of national fame, even though she never saw the concert.
Jordan had to undergo a chemotherapy treatment that would keep her from attending. Her story, and disappointment, were shared on social media, and the Jonas Brothers came to her, paying a visit to her room at Penn State Hershey. The story and a video of their visit quickly went viral.
‘It was one of the most crazy, incredible things that ever happened,’ she said. ‘But you didn’t see in that video … five minutes before they came into my room I was curled up in a ball in my hospital bed crying because I was in so much pain. Or my nurses and mom seriously debating canceling the whole thing. My body was tired and sick.’
Jordan’s mother, Lecia, called her daughter ‘the strongest, bravest person we all know,’ and said the CrossFit Club stopped being just their THON organization and instead became family years ago.
That chemo treatment was Jordan’s last, though she is still in treatment. Through it all, she said, Four Diamonds and THON have been a constant source of support.
‘Cancer wrecks your body and it wrecks your mind and it wrecks your entire life,’ she said. ‘It flips everything upside down in the worst possible way, but Four Diamonds gave me a family and friends and the best support group I could ever ask for.’
Celia Cosentino Family
Throughout the summer of 2018, 9-year-old Celia Cosentino became increasingly sick. She was quiet, always thinking of others and never one to complain much, her mother, Sara, said, so it took longer than it should have for anyone to notice.
But the decrease in appetite, the vomiting, the lost weight and the headaches emerged, becoming increasingly worse, and doctors were stumped. Pediatricians treated for gastrointestinal issues, but by August it had become too much to bear.
A trip from the family’s home in Wyomissing to the emergency room at Hershey led to more frustration, but as Celia was about to be discharged, Sara asked for some Tylenol to relieve her daughter’s headache. That caught the attention of a doctor who ordered a CT scan.
After the scan, Sara went to a room where she was met by a doctor and a chaplain. The scan had found a large mass on Celia’s brain. Sara remembers yelling at the doctor that she knew something was wrong and no one had listened to her.
‘He grabbed me by the shoulders and told me my daughter was going to take her cues from me and I had to pull myself together for her,’ she said. ‘It sounds harsh in retrospect but I repeated those words to myself over the next year and still today.’
Celia spent the next 15 days in the Pediatric Intensive Care Unit at Hershey. It would be her shortest stay of the next nine months, as she mostly lived at the hospital while she was treated for a brain tumor, which was in such a precarious position it could not be fully removed.
She had breathing and chest tubes and no way to communicate except a white board. One day she wrote that she felt better and was ready to go home.
‘This sweet girl had no idea what was in store for her and neither did we,’ Sara said.
In September, she began treatment that included five cycles of a five-drug regimen chemotherapy, three cycles of high-dose chemo and stem cell transplants, and 40 rounds of radiation.
During her nine months in the hospital, Celia suffered a host of complications including loss of hearing, leg mobility and hand use, a collapsed lung, cardiac issues and more.
‘It was around the third cycle of chemo that Celia became someone I didn’t recognize,’ Sara said. ‘She had gotten so angry and who could blame her. She would yell at the doctors and nurses, refuse to participate in activities and worst of all wouldn’t play or interact with [her older sister] Adeline. Our sweet, quiet girl was filled with such rage that we truly didn’t know how she’d make it through two more rounds of chemo. But I didn’t want to tell her not to be angry.’
Instead they found ways to channel her anger into her fight against cancer, thanks to Penn State Hershey’s Child Life and art and music therapy programs.
During Celia’s fourth cycle of chemo, Sara noticed a change. Celia smiled more, initiated activities, spent hours with her family wandering the halls when she wasn’t in isolation and advocated for herself. She still had days when she was angry or sad, but the smiles outweighed the tears.
‘I asked her about it one day and she said, ‘I just decided it’s better to be happy than angry,” Sara said. ‘That statement became the guidepost for the remainder of her treatment and I believe served us well.’
It’s also one of the takeaways the Cosentino family has had from their experience. Sara said she knows being positive doesn’t cure cancer, and it’s not always possible, but when it is ‘it does make dealing with all the horrible awfulness of it a little bit easier.’
The family also learned to be advocates for what Celia needed. The most valuable lesson, Sara said, was that ‘sometimes, you find friends in the most devastating times.
‘There’s a popular saying in the cancer world: ‘Cancer turns friends into strangers and strangers into friends.’ In no situation is that more true than with THON,’ Sara said.
In the early days of Celia’s treatment, Sara was in a fog and only occasionally replied to the outreach from their THON organization, Ultimate Frisbee. But the students remained unfazed and continued to extend their support.
‘Once the fog started to lift a bit I replied more and we were finally able to form a proper relationship with them. They’ve come to events for Celia and Adeline, driven to our house to play games, bought lots of Girl Scout cookies, and have been a pillar of support, strength and friendship to our family,’ Sara said. ‘We’re so grateful to the financial help from the Four Diamonds raised through THON, but equally important to us is the relationship Celia, Adeline, Terry and I have developed not just with our org but every member of THON that we have come into contact with. I truly have no words to explain the gratitude I have for them and all of you.’
She left the audience with advice to emulate the courage Celia has shown throughout her fight:
‘Be brave. Be strong. Be resilient. Be fierce.’
Sara Cosentino speaks about her daughter Celia’s battle with cancer while joined by Celia’s father Terry and sister Adeline.
William Sweger Family
The final group to speak, the William Sweger Family, took the stage to close out Family Hour. William Sweger’s mother, Amy Nesbit, spoke on behalf of her son, who died in 2017 at the age of 12 after a battle with leukemia.
“A lot of people never see the dark side of cancer and what it does to children. It’s heartbreaking, gut-wrenching, and traumatic,” Amy began. “But I don’t want to focus on that. I want to focus on William. He was so much more than his cancer journey.”
She remembered William as an “old soul with a giggle that was contagious,” recalled his love of fishing, and looked back on one particularly memorable interaction with him where he tried to rub Head & Shoulder shampoo on his sore shoulder and how he was disappointed it didn’t work.
When William was first diagnosed with acute lymphoblastic leukemia, Amy said she wasn’t too afraid. But after some a month, it was revealed he had a rare subtype, which would go on to complicate their journey.
William received a bone-marrow transplant and ended up doing well for quite some time. One year after his initial diagnosis, he rang bell in triumph that he was cancer-free. But five weeks later, he relapsed.
“Cancer came back wth a vengeance and it was not kind to him,” Amy said.
While explaining the challenges her family have faced over the years and the support of its org pairing, Amy used a set of analogies that a true fisherman like William would’ve loved.
“They were the anchor when we were lost, life vest when we were drowning, and our best catch on a glorious, sunny day,” she said.
“What each of you do for families like ours is absolutely priceless. There’s truly no way to adequately describe what THON means to our families. Those pieces of yourself that you so freely give is what holds us together. Although cancer took will from us physically, cancer cannot take away who he was. Unfortunately, more work need to be done so one day we can dance in celebration.”
After Amy spoke, William’s stepfather Derek spoke briefly.
“Dear Cancer, this is our statement,” he said, motioning to the full arena.
“You’re not only saving lives of today, but you’re saving live for years to come. Whenever you think you can’t, find your fearless.”
Sara Nesbit speaks about her son, William Sweger, who died in 2017 at the age of 12 after a battle with leukemia.
