THON 2020’s Family Hour Highlights Strength Of Relationship Between Families, Orgs
Like every year, THON 2020’s Final Four included one of the most sobering parts of the entire weekend as three Four Diamonds families shared their stories with the Bryce Jordan Center during Family Hour.
Family Hour began with Four Diamonds co-founder Charles Millard taking the stage. Millard co-founded Four Diamonds in 1972 following the passing of his son Christopher after a three-year battle with cancer. The foundation’s name honors a story Christopher wrote after his diagnosis about a quest a knight went on to find the four diamonds of courage, wisdom, honesty and strength to escape the grips of an evil sorceress.
“You’re amazing,” Millard said, looking around the arena. “I want to thank you very much for everything you do and the things you do for these families.”
After Millard greeted the BJC, the Family Procession began, as each Four Diamonds family walked across the stage to a round of applause from those in attendance.
The first family to talk to the Bryce Jordan Center was the Lily Jordan family.
“We’re constantly overwhelmed by your strength and your love and we cannot thank you enough,” Lily’s mother Lecia said.
This is the Jordan family’s fifth THON, and when they were approached by THON about talking, Lecia said she’d only do so under a few conditions: if their son RJ could opt out and if they had their org, Crossfit Club, could join them on stage.
“They stopped being our org years ago and became our family,” Lecia said of Crossfit Club.
Her other request was that Lily be the one who spoke.
“Lily Jordan is the strongest, bravest person we all know, so we said, ‘Yeah she can talk,'” Lecia said before handing the microphone over to her daughter, who radiated hope throughout the BJC with her spunk and honesty.
“There are a lot of you, so let’s get that out of the way,” Lily began. “By looking at me you can tell something happened to me. That something was cancer.”
Lily, a 17-year-old from Camp Hill, was diagnosed with osteosarcoma at age 12. She’s been in and out of treatment since then, but underwent her last chemotherapy session last summer.
“I don’t think I can come up with the words for how much I’ve lost,” she said.
After providing some background on her battle with cancer, Lily shifted her focus to her involvement with THON and the relationship her family has forged with Crossfit Club.
“We thought Crossfit Club would be a bunch of meatheads [when they were first paired],” Lily said. “They were but we still loved them.”
If Lily’s name sounds familiar to you, that’s because she was the patient in a viral video of the Jonas Brothers visiting the Penn State Children’s Hospital last.. Though sweet, the viral moment didn’t come close to telling the full story of that day for Lily.
Crossfit Club member and 2020 dancer Hannah Canil had originally gotten Lily tickets to see the Jonas Brothers perform in Hershey, but she ended up not being able to go. Instead, the brothers came to her.
But five minutes before they visited her hospital room, Lily had been “curled up in a ball” on her hospital bed, crying in pain from her most recent chemo treatment. Her mom and nurses even considered canceling the whole thing. But the brothers did end up visiting and that treatment went on to be Lily’s last round of chemo.
“Cancer wrecks your body, and it wrecks your mind, and it wrecks your life, she said to close out her time on stage. “It flips your life upside down. But Four Diamonds gave me a family, friends, and the best support group I could ever ask for, so thank you for that.”
After Lily’s uplifting speech, a cheer of “We love you, Lily” rained down from Crossfit Club, which was sitting near section 210.
When the Jordans exited the stage, the second family to talk, the Celia Cosentino Family. The Cosentinos were met with a loud round of applause from throughout the building.
Celia’s mom Sara spoke on behalf of the family and described what her daughter had been like before her diagnoses.
“She was compassionate, generous, and her thoughts were always for someone else,” Sara said.
Sara recalled that Celia had never complained and that was so giving, that for her birthday, she’d always ask for two of something, so her older sister Adeline, described as “her favorite person in the world” could have something.
That selfless nature, Sara believes, may’ve been why it too longer than it should’ve for anyone to realize there was something wrong.
During the summer of 2018, Celia began to have sever headaches and vomiting, among other symptoms. A doctor recommended the family see a gastrointestinal specialist, but the next available appointment was for another five months.
This answer didn’t satisfy Sara, so she ended up taking Celia to the ER for additional testing, hoping to get fast-tracked to a specialist. When nothing substantial was found, Sara, still skeptical of the lack of a diagnosis, asked if her daughter could at least get some Tylenol to ease her headache on the way home. That remark caught the doctor’s attention, so he decided to order a CT scan for Celia.
The CT scan ended up revealing a large mass on Celia’s brain. Sara said she initially reacted with an outpouring of shock and emotion, but the doctor quickly reminded her that her daughters would take her cues, so she needed to compose herself. Sara said that mindset has stuck with her a year and half later into their journey with cancer.
After the tumor was found, Celia was admitted to the PICU for 15 days. That would end up being the shortest hospital stay in the next nine months. Doctors later said that the mass was in such precarious position that a full removal wasn’t possible.
About month later, Celia began chemo, and she and Sara lived in Hershey from September until May, meaning Sara missed Adeline’s entire sixth grade year. During this time, Celia began to lose hearing, experience significant muscle loss, and suffered collapsed lung, among many other complications. By the third cycle of chemo, Sara said she couldn’t even recognize her daughter.
The once gentle and loving Celia now yelled at doctors, wouldn’t participate in any activities at the hospital, and refused to play with Adeline
“Our sweet little girl was full of too much rage and despair,” Sara said. “We started working to channel her anger toward cancer and into her fight through therapy.”
This therapy ended up helping significantly, as Celia learned how to use her voice to be an advocate for herself. In the process, she started to smiled more, became more active at the hospital, and conducted scientific experiment in her hospital room.
“Her smiles were more than her tears, and when I asked her about it one day she said, ‘I just decided it’s better to be happy than angry,'” Sara said. “Some people go through their entire lives without realizing that.
“Positivity doesn’t cure cancer, but it does make dealing with all the awful things easier. Cancer turns friends into strangers and strangers into friends and in no situation is that more true than with THON.”
Through Four Diamonds, the Cosentinos were paired with Ultimate Frisbee. And although the family was initially too consumed with Celia’s battle to let the org in, Frisbee kept trying and the result has been a strong support network like so many other Four Diamonds families have come to experience. Sara happily acknowledged the many trips org members have made to their home, school events they’ve attended, and Girl Scout cookies they’ve bought from them.
Sara ended her time on stage with a simple message: “Be brave. Be strong. Be resilient. Be fierce.”
After the Cosentinos spoke, the beloved “Where are they now?” video played throughout the arena, showcasing more than 15 minutes of success stories.
After the video, 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 passed away in 2017.
“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.”
After the Sweger family spoke, the Celebration of Life video played, remembering all of the Four Diamonds children who have passed away during the foundation’s five decades. When the video concluded, the Singing Lions took the stage for a singing of “Dancing in the Sky” to conclude Family Hour.
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