A year after losing their son to leukemia, the Gilkey family finds solace in memories - and a fund for future research.
Most nights Laura Gilkey stays up a few minutes past midnight.
That’s when Facebook changes its feed, to include a memory from that day in a previous year. It’s a chance for Gilkey to virtually re-connect with her son, Benjamin Gilkey. He’s affectionately known as Benji — and through more than two years battling leukemia, Benji the Brave. Benji Gilkey died Feb. 11, 2017, less than two months after he turned 9 years old.
“The thing I crave the most is a fresh memory,” says Gilkey, an Arlington Park resident. “Once in a while it gives me a clean memory I didn’t have. Those are the best.”
Those memories could be a black and white profile photo of just Benji, hair flowing with a wide smile. Some are goofball posed photos in a hospital room.
One is a video of Tampa Bay Buccaneers players visiting children in Johns Hopkins All Children’s Hospital in St. Petersburg.
But Gilkey does more than look back. She also looks forward, partially for the Benjamin Gilkey Fund for Innovation Pediatric Research she and her family launched in Benji’s honor. Laura Gilkey, 41, also looks forward for her husband, Michael Gilkey, 43, and the couple’s 13-year-old son, Banyan.
Laura Gilkey, by promoting and supporting the fund, and through an uncommonly raw blog (benjaminthebrave.com/blog) where she writes, also has been thrust into the spotlight in Sarasota. While the Gilkeys are far from the only family in Sarasota — or anywhere else — to lose a child to illness, her graceful blog posts have resonated with people locally and nationwide. Gilkey has heard from hundreds, if not thousands, of people on the blog.
“This has been the hardest day,” Gilkey wrote on her blog Feb. 12, 2017. “Even yesterday, the day my Benjamin died, was easier than this. Today he wasn’t here. And I wanted him to be. So badly.”
Adds Gilkey: “I thought that when we came home I would collapse into our bed and not wake up for days. I was wrong. Every hour I woke, perhaps too accustomed to the beeps and the lab draws and the vitals at 4 a.m. At 5:30, I was up for the day. I took my coffee to the computer and started to write Benjamin’s obituary. It is as painful a task as there is, and it will never do him justice, no matter how many drafts or edits I torture myself with.”
Benji’s diagnosis and treatment evolved over more than two years. It started as a common childhood cancer, Pre-B Cell Acute Lymphoblastic Leukemia. During treatment, the family and doctors discovered he had a rare predisposition for Constitutional Mismatch Repair Deficiency, which was essentially responsible for the leukemia. There’s only been some 150 reported cases of Constitutional Mismatch Repair Deficiency.
Benji’s school, Southside Elementary, where he was in third grade, rallied around the Gilkey family during the years he was sick. In an odd twist, the school had a second student battling cancer, first-grader Avery Rann, around the same time Benji was in his fight. Avery Rann died May 11. She was 7 years old.
Avery Rann’s father, Russ Rann, says the school’s network of support was a comfort during a difficult time. A Sarasota native who only moved his family to the Southside district a few years ago, says it was divine intervention that brought his family there. Support included meal trains, ribbons on trees and just random acts of comfort for the whole family. Laura Gilkey says her family also benefited from the extended support at Southside.
“No one can really understand the pain, and I didn’t ever want to ask for help,” Rann said. “But they made it easier for us to go through it. If I had to go through it again, I wouldn’t want to be anywhere else.”
Memories of Benji for Laura Gilkey remain fresh at Southside. Soon after Benji died, on her way to drop some papers off, she recalls, she walked past another mom. The mom burst into tears seeing Gilkey, standing on the sidewalk in front of the school. “It’s really hard for people to know what to say,” Gilkey said.
Gilkey has slowly gotten back to other aspects of her life: She works with her husband, handling marketing and public relations at Michael A. Gilkey Inc., a Sarasota-based landscape architecture firm. She sees a grief counselor at Tidewell Hospice and interacts with people on private Facebook Groups. “I prepare myself so much for the moments everyone says will be hard,” she said, like Christmas or Thanksgiving. “But the moments that are unpredictable are the ones that are really hard.”
One example: the last day of school at Southside in 2017. She thought about the frenzy of that day, summer starting in the parking lot, and realized “I didn’t have Benji to pick up.”
Another focus is Banyan, where Laura says she and Michael Gilkey are motivated to “not let time slip away.” The family goes on camping trips often and other outings. Banyan, Laura Gilkey says, excels at seeing “the joy in things.”
Such as the time, around last Christmas, when the family found an ornament that reminded them of Benji. Michael and Laura Gilkey fought back tears. Bayan smiled, thinking of his brother.
The Benjamin Gilkey Fund for Innovation Pediatric Research also keeps Gilkey busy. The target: research in the fields of genetic predispositions, immunotherapy and toxicity to chemotherapy, all factors in Benji’s cancer. It has raised more than $280,000 through Feb. 1, and the first proposal for a research study is currently under review at the hospital.
One thing Laura Gilkey tries to avoid, coming up on the one-year mark, is self-pity. “I don’t do ‘why me’ or ‘it’s not fair,’” she says. “That doesn’t help anything.”
She says she particularly appreciates the support of her family and her network of support in Sarasota. That also pushes her forward. “As the year anniversary of Benji’s death approaches, I have often thought about the first year of his life, and how very different these two years have felt,” Gilkey says in an email. “Time has lost all predictability. That first year of Benji’s life felt so beautifully slow; I remember his first birthday and how much there was to reflect on. In contrast, this past year has eclipsed me completely. Everything has not only flown by, it has almost disintegrated.”