‘He wanted to be seen as a 22-year-old young man’
When people ask Kelly Jo Golson about her son’s sickness, she tells them about the before.
How her son, Jay Burger, was a social kid, the one always getting groups together. The high school freshman who moved to a new town and rode a bike up and down the street, knocking on doors to make new friends. The sports fanatic who could quote stats from college level to professional leagues, using the data as a conversation starter and relationship builder. A fiercely protective big brother to a younger sister and brother.
“He fully believed in the spirit and growth we all gain from one another and being together,” his mother said.
He was more than the cancer that came in the end.
Burger, 24, died in 2016 after multiple rounds of treatment to vanquish a cancer they never lost hope he would continue to fight. It was a situation that began six weeks before he graduated from college and changed a trajectory that should have been the beginning of his adult life.
It’s for this reason that his family created Jay’s Hope, a nonprofit that gives grants to young people diagnosed with cancer and seeks to raise awareness for the unique place that young adults with cancer find themselves — at the cusp of the rest of their lives and yet asked to make lasting, and adult-sized, decisions about care and treatment.
As chief marketing officer of Advocate Aurora Health, Golson found her son’s situation reshaped her lens to the health care industry.
When he walked into the hospital, she said, “It was very important to him to not be seen as a patient. He wanted to be seen as a 22-year-old young man.”
She thinks of this often, as she helps the health system streamline how patients access and utilize care.
She thinks of how he wanted an evening appointment, so he could go to a concert with a friend. She thinks about how he did not want to spend an hour of his time on hold while booking an appointment. She thinks about the times he would ask her, “Why does it have to be this way?”
It’s their calling, she believes, to simplify the health care journey, to make care more personalized.
“He had dreams and aspiration and likes and dislikes, and I think we’re all called upon, our purpose is to help others live well,” she said. “I’m so incredibly committed and humbled by that.”
Burger was 22 when he found out he had Ewing’s sarcoma, a rare form of cancer that affects the bones and tissue around them. The diagnosis came after stubborn back pain and many tests. One appointment led to another, and another.
He and his mother would stay up late talking, both night owls. “I was starting to grow a little more
concerned, because it was something more serious,” Golson said. “I could just sense it was not just a strain.”
After the last assessment, a doctor called and asked him to come in. He was on his way to class, he told the physician, could he call him after? No, the doctor replied, he should come in now.
So he called his mother, who stayed on the line as they heard the diagnosis.
“From that very moment until the last breath,” his mother said, “all of our family and friends had hope that he was going to
beat it.”
Burger maintained his positive spirit throughout his treatment, which included multiple rounds of chemotherapy and radiation.
And he kept doing the things he thought should fill his life. He went to Blackhawks games, he attended the Masters Tournament. After he graduated from college, he moved to an apartment in downtown Chicago, eager to seek a life on his own as a young person in the city.
“He wanted to live more than any human being I’ve ever met,” Golson said. “He
fought through the pain. He was going to Blackhawks games and Bears games and Bulls games.”
As his friends began post-college lives, he spent nights in the hospital.
Still, he remained grateful for the experiences he had.
His mother recalls how he once saw a toddler cancer patient and told her, “Man, mom, that’s not fair. They’re not going to be able to have half the experiences I did.”
A year and a half after his diagnosis, he was admitted to the hospital again, one they thought would be another blood transfusion and eventual release. This time, he never left.
Up until the final morning, his mother said, he was still fighting, texting about different treatments they could try.
“I would have changed in a heartbeat,” she said. “Other than my prayer to heal him, my prayer was to put it on me. My husband did the same, as did my parents.”
He died June 25, 2016, leaving behind beloved friends, as well as his mother and father, Mark,
and younger brother, Luke, and sister, Sophie.
After his death, people kept asking the family where to donate in honor of Burger. So in 2016 they created their foundation, which has issued grants to provide hope and joy for young adults battling cancer, including a lounge for teens at Advocate Children’s Hospital in Oak Lawn with the NBA Jam arcade game, one of Burger’s favorites, and bringing young cancer patients to Cubs and Brewers spring training.
On Monday, the family held its annual Jay’s Hope Golf Tournament. Burger kept his love for golf close, getting out to the putting green even when entire rounds became rare. He’d post to social media with the words “back to business,” a phrase that has become the event’s motto.
“That was one of his things, to bring people together, to be the one that had everyone rally around,” she said. “And even in his absence, he’s still doing that.”