One captain’s journey through cancer

provided by Barker family Brianna Barker, right, celebrates during the final hours of THON 2018 with her then-captain Cara Santoleri. Barker was in the midst of treatment for an aggressive form of cancer, and the support from her friends and colleagues.

By Michael Martin Garrett

Penn State News

UNIVERSITY PARK, Pa. – By the time she came to Penn State, THON 2019 photography captain Brianna Barker had already overcome more than anyone her age should have to live through.

Diagnosed at age seven with dilated cardiomyopathy, a condition that affects the heart’s ability to pump blood, Barker spent much of her childhood in and out of hospitals and doctor’s offices, unable to join in many of the everyday activities her friends and classmates were able to enjoy. Things as simple as gym class were always beyond her grasp.

At age 13, she started to enter heart failure. Hospitalization and life support followed. Then, one month before her 14th birthday, she received a heart transplant – giving Brianna something she hadn’t realized she’d been missing.

“It really gave me a life that I didn’t even know existed,” Barker said. “All those things I missed out on, they seemed small at the time, but I realized that they added up to a normal life. That’s what I was missing.”

Once not able to attend a sleepover with her friends without worrying about her health, she was now able to come to Penn State with a new sense of security and throw herself into her new life, where she quickly got involved with the Penn State IFC/Panhellenic Dance Marathon, or THON: the largest student-run charity in the world, which every year raises millions of dollars for pediatric cancer research and support for families impacted by cancer.

Having personally known children battling pediatric cancer during her years in and out of hospitals, Barker’s own experiences with childhood health struggles fueled her interest in helping THON fight this disease, even if she had never been personally impacted by cancer herself.

That is, until her own diagnosis.

A song in her heart

Barker could feel that Penn State was the place for her after her second visit to the University Park campus. More than just the world-renowned academics, Barker, now a dual major in premedicine with the Eberly College of Science and telecommunications in the Donald P. Bellisario College of Communications, experienced a feeling of home at Penn State, an instinct that she belonged – an instinct that proved to be right, as she and her colleagues at THON quickly became as close as family.

As a member of the THON 2017 photography committee, Barker met some of her closest friends – “people with souls of gold,” she calls them – whose friendship and words of encouragement didn’t just help her become a better photographer, but helped her become more self-assured as a person.

“Literally, getting that position with THON changed my entire educational experience. I’ve gained so much confidence in myself, being surrounded by such a loving and accepting community that constantly supports me,” Barker said. “It’s a community that accepts you for who you are. I had so many people assure me that I was talented, encourage me to shoot for the stars, to break boundaries – and even if I fell, I know everyone is there to catch me.”

Those bonds would grow even stronger when, only two weeks before THON 2017, Barker’s father passed away from a heart attack. Her THON colleagues grieved with her, comforted her, stood by her with shoulders ready to cry on, and helped her find the strength inside herself to carry on.

“I don’t know what I would’ve done without the THON community,” Barker said, before reflecting quietly a moment.

‘It’s in my bones’

As the fall semester of her junior year drew to a close, Barker had noticed a lump in her armpit growing larger and more painful with each passing day. After a series of tests over the holiday break, she received the fateful call from her doctor on the first day of her spring 2018 semester.

She had post-transplant lymphoproliferative disorder – a proliferation of cells caused by the immunosuppressants she had to take so that her body wouldn’t reject her transplanted heart. Whether or not those cells were cancerous, the doctor told her, was really something she would need to discuss with her oncologist.

“I remember sitting on my floor, sobbing. I felt like I had worked so hard for all of this, I had my friends, I was a resident assistant, my research and tutoring position, I had THON – and it was all being taken away from me,” Barker said. “When I finally had to call my THON captain and tell her, we were alternating between crying and laughing together. But, again, I felt so much love and support.”

Barker ultimately had to withdraw that semester. The following period was “truly awful,” one that she doesn’t necessarily care to discuss much. She remembers sitting on the couch with her mother one night, while they were still waiting for test results to confirm whether or not she had cancer, and she said to her mom, “Whatever it is, it’s in my bones now. I can feel it.”

It was cancer. Barker was diagnosed with a form of non-Hodgkin’s lymphoma, a cancer that originates in the lymphatic system and one of the most aggressive forms that the disease can take. By the time the diagnosis was official, Barker already was in stage four, indicating the cancer had spread widely outside of her lymph nodes.

The good news about Barker’s diagnosis was that, while her form of cancer was one of the most aggressive, it also was one of the forms most responsive to treatment – meaning there was a light in an otherwise dark prognosis. If she could just push through her chemotherapy, if her recovery went well, then maybe she could still be on the floor of the Bryce Jordan Center with her closest friends during those magical 46 hours that occur every February.

While her cancer did respond to the chemotherapy, the treatment took its toll. Even so, and though she was still battling her illness and the lingering effects of the chemo, she was able to make it back to Penn State and onto the floor for the final hours of THON 2018.

Her THON colleagues were overjoyed.

Cara Santoleri, THON 2018 photography captain and one of her Barker’s closest friends, recalls that the entire photography committee “knew we had to do something for her.”

“We raised money to pay for a hotel room for her and her mom for THON weekend, we made bracelets that we wore that said ‘Bri Brave,’ and we made her a scrapbook with photos of each us saying that ‘We THON for Bri,'” Santoleri recalls. “She told me later that she had really been struggling, and that she’d needed that, that it helped bring her back up.”

The book, especially, made an impact. Barker took it with her to all of her remaining chemotherapy appointments. She showed her doctors and nurses, and explained how much THON and her friends meant to her. She read the scrapbook over and over again, counting down the days until she could return to the place she knew she belonged.

A light in the dark

Barker knows that not every story has a happy ending. Some children live with cancer their whole lives, and pass away tragically young. That’s why, even though she says she struggles with survivor’s guilt, she feels so blessed that her story has a happy ending – or, perhaps more accurately, not an ending, but a happy beginning for whatever comes next.

Her chemotherapy was successful in eradicating her cancer. In the fall of 2018, was able to come back to Penn State and rejoin her closest friends to prepare for THON 2019 – this time not just as a member of the photography committee, but as its captain. She’s able to once again be with the people she loves, doing the work she loves doing.

“I credit Penn State, I do, and the community of friends she has there, for helping her get through treatment,” said her mother.

Her journey has made an impact on many of the people closest to her, who praise her as an inspiration to persevere during difficult times – the same inspiration that Barker praises them for sharing with her.

“‘It is better to light one candle than to curse the darkness,'” said Caela Camazine, co-captain of this year’s photography committee. “And, in so many ways, Bri embodies that single candle in the darkness.”

But for all the ways she’s made a difference in the lives of those around her, Barker remains humble. If her work with THON can help Four Diamonds families, or if she’s able to pass on just some of the joy that her THON friends and colleagues have brought her, then she is happy.

“I think what I learned is that no matter what’s going on in your life, even if it’s absolutely god-awful, you can make it through if you have the support of people who make you feel like gold inside,” Barker said. “I didn’t have a choice to have to go through what I did, and I only got through it because of the people around me who gave me the strength to persevere.

“If you’re a Penn Stater, never turn down the opportunity to surround yourself with the amazing people here,” she said. “We’re here for you.”

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