From Sun Magazine: Grayson Gilbert's divine strength

It all started with a simple plea and a powerful photo. Now years later, the selfless little boy who wasn't supposed to live has gone on to become an inspiration to cancer patients

  • Grayson Gilbert in front of Johns Hopkins Hospital.
Grayson Gilbert in front of Johns Hopkins Hospital. (Algerina Perna, Baltimore…)
May 19, 2011|By Jonathan Pitts, The Baltimore Sun

May 19, 2011

The boy approached the marble statue, gazing up — miles up, as he remembers it now — into the face of the benevolent figure it depicted.

It was May 8, 1996, and Grayson Gilbert, 6, had a lot on his mind.

A few months earlier, surgeons had found a tumor woven through his abdominal cavity like some malevolent clinging vine. They'd removed his gallbladder, half his stomach and 80 percent of his pancreas. Chemotherapy had taken his hair.

And as he waited for a follow-up appointment with his doctors, the boy was leaving a personal note at the feet of the sculpture of Jesus that has graced the foyer below the dome at Johns Hopkins Hospital since 1896.

"Dear Jesus," it read in his wobbly hand. "This is Grayson. If you could, just heal the other kids please. Thank you very much."

Grayson had no idea that 1996 was a milestone in the history of the statue, officially known as "Christus Consolator" ("Christ the Divine Healer"). That mattered more to the man with the camera standing nearby.

Jed Kirschbaum, a photographer for The Sun, happened to be in the room seeking an image to accompany an article the paper was running about the 100th anniversary of the statue. "Once in a while — maybe half a dozen times in your career — things come together, circumstances converge in a way that evokes something special," says Kirschbaum, who has been with the paper for 33 years.

The photo he got — of the frail boy in his orange Towson Rec baseball shirt, his hairless head illuminated by a shaft of light — hit the front page on Mother's Day and moved readers in a way few ever do.

Doctors thought Grayson would live a year if he was lucky, five if he was among the select few. Fifteen years later, having survived life-threatening complications again and again, he's a communications major at Towson University, a fundraiser for the hospital that has repeatedly saved his life, and in the words of one friend, "a total inspiration."

There's no one reason Grayson Gilbert has emerged as a medical anomaly. The photo on the front page played a part. But as he sits on the sofa in his family's Towson home, calmly recounting the highs and lows of his journey, a deeper factor is impossible to miss. "I've always had this faith," he says, "that things are going to work out."


If many strands converged to result in the picture, one leads back to Towson, where Grayson was born in 1990 to a middle-class family that had known little of tragedy.

At the age of 5, the tiny boy who loved Cal Ripken, the basketball Terps and a good game of Wiffle Ball, started displaying unfamiliar behaviors: locking his arms behind his back, squirming in his seat, eating less. His parents, Jodie and Steve, probed his stomach one day and felt a bulge.

Doctors at GBMC spotted a mass in his abdomen. They told the Gilberts to get Grayson to Hopkins hospital right away. A biopsy that night revealed a tumor enveloping his pancreas and other organs.

Eric Strauch, a pediatric surgeon, told the family it was likely a malignant cancer, that they'd have to stay at the hospital indefinitely, and that doctors would have to act quickly.

Steve, a commercial real estate broker, ended up sobbing in a restroom. "The fear was overwhelming," he recalls. Jodie sought a higher power. "I've always hoped [God] hears us," she says.

The mass, it turned out, was pancreatoblastoma, a malignancy that makes up 1 percent of all pancreatic cancers. It's so rare in children that the medical literature reflects just a handful of cases.

In the short term, oncologists had to shrink the tumor so they could operate without killing the boy. They worked up a chemotherapeutic cocktail and brought it down to size. The boy went through radiation, bouts of infection, high fever. The Gilberts were living an uncertainty they'd never known.

Like thousands since 1896, they sought comfort at the feet of the Jesus statue, a 101/2-foot tall sculpture fashioned from a block of Italian marble. Steve scrawled his thoughts. Jodie prayed. When he was able, Grayson touched its feet and silently shared his fears. By late February, he was ready.

He faced Whipple surgery, a procedure in which surgeons remove much of a patient's digestive tissue, leaving just a sliver of the pancreas intact, then reconnecting what's left of the organs into a cruder, if still functioning, system. The team included Dr. Paul Colombani, the director of pediatric surgery at Johns Hopkins Children's Center (he'd been on the team that saved President Ronald Reagan's life after the attempt on his life in 1981) and a widely respected pediatric surgeon, Dr. Walter Pegoli.

Grayson's tumor was so aggressive they told Steve they'd be cutting beyond its lines — exacerbating the peril of working inside such a tiny patient. They got to work

Colombani emerged after about seven hours. "Walter's in there taking heroic measures," he said. "But have a minister here." Two hours later, it was over.


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