Benjamin Burke is telling me about piano lessons. “We had to sing, but I’m not that kind of person,” he says. His parents and I laugh, but he isn’t making a joke. In a way that’s quite matter-of-fact, he knows himself, and he knows what he is and isn’t about. It sounds a little crazy to talk about a 10-year-old like that, but sometimes Benjamin comes across older. Three years of treatments for T-cell acute lymphoblastic leukemia will do that.
Just three more months of treatments remain. He’ll get them at Ann & Robert H. Lurie Children’s Hospital of Chicago, one of 170 Children’s Miracle Network hospitals. Barbara and Jack Nicklaus, in their continued support of children’s health care, are leading a new campaign to raise $100 million to benefit Children’s Miracle Network Hospitals nationwide.
Benjamin, an avid golfer, even got to meet Jack Nicklaus. He wasn’t nearly as nervous about it as his dad, Sean.
The Burkes trace Benjamin’s battle with leukemia to his seventh birthday. The first sign was an achy stomach—“It was a tie-dye rainbow birthday cake, and I couldn’t eat it,” Benjamin remembers. Then he woke up with a swollen eye that a nurse said not to worry about, followed by small red dots on his wrist. Some Googling led his mom, Jennie, to a page that said they were petechiae, a symptom of leukemia. “But I thought, 'He doesn’t have cancer, so that can’t be it.'” When her son woke up with an earache, she brought him to the pediatrician. After blood tests, she got a call later that night.
“They told me to drive very carefully and very quickly to the hospital,” she says. “There’s a bed for him and a hematologist-oncologist waiting.”
He spent almost as much time in the hospital as he did out of it for the next 10 months. The Family Life services at Lurie Children’s attempt to keep life in the hospital as normal as possible, such as providing school services and music therapy, which are funded by the Children’s Miracle Network.
Now Benjamin can take chemotherapy and other medication at home, though that means swallowing up to 27 pills a day. Benjamin and the entire Burke family, including younger brothers Charlie and Teddy, have been affected by Benjamin’s leukemia. There’s no way for that not to happen. But the family works hard to reframe the negative. Benjamin wants to be a pediatric surgeon someday. Or, if he becomes a professional athlete, to set up a foundation for children’s cancer.
A lot of the bright spots the past three years have involved sports. He has met athletes and attended professional sporting events. He built a Wrigley Field replica from Legos. “Three-thousand, nine-hundred and eighty pieces,” he says.
Legos are fine for the hospital, but when he’s home and feeling good, he likes to tee it up. Benjamin has played PGA Jr. League, practices in the winter at Addison Links and Tees Golf Dome and had his most recent birthday party at Topgolf. His main haunt is the nine-hole Cantigny Youth Links. Kids take a test to get certified to play without a grown-up. “Me and my three friends, we go play and then call our moms when we’re done to come pick us up,” Benjamin says.
Jennie loves the flexibility of scheduling around golf. Canceling a tee time is a lot easier than missing a baseball game and feeling like you’re letting the team down.
“You can’t predict when he’s going to feel bad,” she says. “But one of the remarkable things about Benjamin is his resilience. He has this tenacity. Like hitting buckets and buckets of balls, early on he’s had that mentality and that ability. That quality has developed very well through cancer.”
The day before we met, Benjamin was out playing in the December cold, testing a new set of clubs. “I hit my drive, and it was a really good drive, and Charlie and me both lost it in the sun,” Benjamin says. “And I finally found it in the rough.”
I interject, saying I hate it when that happens. But he skips the chance to commiserate on the unfairness of a good drive buried in the rough. He’s already telling me about the next shot, the fairway wood he roped back into the fairway.
GOLDEN BEAR TO PLAY YELLOW
▶ The yellow shirt Jack Nicklaus wore the Sunday of his 1986 Masters victory was for Craig Smith, a young fan and friend who especially liked that color and who had died of bone cancer at 13. Barbara and Jack Nicklaus have been dedicated to supporting children’s hospitals for decades, and at the 2019 Players Championship, they will announce a new fundraising campaign called Play Yellow. It’s in partnership with the PGA Tour and Children’s Miracle Network Hospitals, and the goal is to raise $100 million in the next five years for children’s hospitals. —KL