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. (Algerina Perna, Baltimore Sun / April 28, 2011)
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.
Stand for a while in the hall beneath the dome, where six hallways converge and people come and go like bees in a hive, and you'll see that the statue in the center — its arms outstretched, its eyes downcast in sympathy — is still a living anchor for the spirit.
One visitor leans against a wall, staring in silence. A doctor taps the statue's right foot and vanishes. Two women write in the journal kept nearby.
"Thank you for holding my daughter in such capable hands," reads a recent note. "Last day of chemo; thank you, Lord!" says another. Adds Jason, 8: "Bless my family, Jesus. Look after me and my momma and tell [her] I love her. And God, I have a question. Why did you get hanged on a cross?"
The Gilberts took turns beside the statue during the Whipple's ordeal, and that, Steve says, helped cement its place in their family story. "[The statue] gave us, and Grayson, this feeling he could beat the odds," he says. "We still have pictures of it all over our house."
But faith, he knows, isn't certainty.
Grayson's condition was so rare there was little template for what to expect, and within days, things started to go wrong. They've never really stopped.
There was the matter of the superior mesenteric vein, a channel that conducts vital blood flow between the aorta and the lower abdomen. A clot had formed. Grayson's team reopened him and tried inserting a donor vein. It didn't take. They tried twice more. Pegoli and Colombani feared for his life.
Hours before the clot would have proved lethal, Pegoli opened Grayson up one last time, the boy's father recalls, and found something that startled him: a network of micro vessels that had formed and taken root, doing the work of the missing vein. "He talked about that in almost spiritual terms," Steve says.
After a year or so, Grayson was found cancer-free, but in his abdominal system, weakened by the surgery, one complication has led to another: excruciating liver disease at 12, Type I diabetes at 15, a spleen infection at 19, three bouts with "varices" (weak spots on internal organs that can lead to a sudden, massive vomiting of blood) over the past three years.
His system is so weak he must eat 10 meals a day, and most of those leave him doubled in pain as he digests. He's attached to an insulin pump. He takes 24 different meds and 120 pills to manage the disorders.
"Any one of these conditions would have killed most people," says Norman M. Dy, Grayson's current primary care physician and an almost slack-jawed admirer. "He isn't what you'd call a rare person. The fact he's alive is one for the textbooks. Grayson is one of a kind."
Dy joined Grayson's team about a year ago, and he's quick to laud the skill of those who preceded him: the surgical team; Dr. Kathy Schwarz, chief of Hopkins' pediatric liver center and Grayson's longtime medical director; Dr. Patrick Okolo, the gastroenterologist who saved his life with Thrombone, a relatively new anti-varices medication last year.
But he believes that, in a rare case like Grayson's, something more is at work. "He'll be in my office, and here I am looking at his charts — and we're talking volumes — and then I look over my glasses at him, and there he sits with this big, genuine, optimistic smile," Dy says. "I have never seen him in a down mood. His attitude is always, 'Glad to see you; let's get to work.' "
"If there's anyone who has an excuse to have turned cynical — toward health, toward us doctors, toward people, toward life — it's Grayson. For whatever reason, he doesn't seem to have it in him."
Cal Jr. and Natty Boh
The person you meet at the Gilbert family home in Towson is not what you expect. The frail little boy from the photo, now 5'9" and a wiry 130 pounds, bounces into the room in a Natty Boh T-shirt and jeans, offers a warm handshake and plops on the sofa, ready to talk as long as you want.
Grayson Gilbert — O's and Ravens fan, blacktop basketball player, honors high school graduate, college guy — exudes the kind of health anyone might envy, in or out of a hospital.
"I think I've always had a one-day-at-a-time attitude, and that's really helped, what with my [illness]," he says.
Even at 6, when things were worst, he remembers having a certainty he would be well again, as though he were sidelined with a cold or the flu and just waiting for it to pass. But as he grew older, he learned to build optimism and fortify the positive as though he were lifting weights.
It was work, and he had help.
Take those 12 months he spent at Hopkins after his Whipple's. With grudging permission from doctors, Steve often drove Grayson to Towson to play baseball in his beloved rec league. One day "the kid with cancer" clubbed a pitch over the outfielders' heads and, rounding the bases, ran out of steam at third. Players from both teams carried him across the plate, and weeping parents gave him an ovation. "You have to have positives to focus on," he says with a smile.
In the early days, family members took to walking him round and round the ward — a ritual he turned into an art form during countless hospital stays over the years. First he did eight laps in honor of Cal Ripken's uniform number. In later visits, for other maladies, he did 52 for Ray Lewis, then worked up to 86 for Todd Heap. "Stay active and focus on the next good thing. If they tell you, 'do this, and you're closer to going home,' do it," he says.
As time passed, he shared what he'd learned with others. A year ago, hospitalized after a major bleeding incident, he was on one of his walks around the ward when he met Jamahn Lee, a leukemia patient.
Grayson shared his medical past, engaged Jamahn in sports talk, told him all he'd conquered. "Having leukemia is no fun, but what he's been through has been so much worse," says Jamahn, now 16 and in remission. "He seems not to worry about it. When he says, 'push through, it's going to get better,' you're not going to argue."
Kirschbaum's photo didn't hurt. When it ran in The Sun, editors were flooded with emotional letters. Strangers contacted the Gilberts to offer encouragement. Representatives of the Children's Miracle Network — the international organization that raises funds for sick children — contacted Grayson.
Before that year was up, the nonprofit named him its Maryland ambassador. They flew the Gilberts to Florida, where they stayed at Disney World, met celebrities and spoke with others in their situation. The kid with cancer had another new lease on life.
A copy of the photo stands on a shelf in the Gilberts' living room, a constant reminder that even in the midst of disaster, there's hope.
Steve lost his job in an industry cutback two years ago. The family, now on food stamps and public utility assistance, is at risk of losing their home.
"Every dime we've ever made, we've put back into [Grayson's] medical care," he says, estimating their total out-of-pocket costs at well into the six figures by now.
If he earns more than $2,300 in a given month, Gilbert says, the family could lose what health insurance Baltimore County Social Services provides.
Grayson's parents are lifetime Christian believers, regular attendees at Grace Methodist Church on Northern Parkway, but they still find themselves wondering, at times, whether it's true that things happen for a reason. Then they look at their son.
After Florida, he got it into his head to raise money for cancer research to "help the other kids." He started making drawings. They came to the attention of officials at Jos. A. Bank, who put them on a line of neckties. Over the last decade, Grayson and other patients from Johns Hopkins Children's Center have designed "Miracle Ties" that have raised tens of thousands for the Children's Miracle Network.
RE/MAX American Dream, a local affiliate of the real estate firm, also came calling. A decade back, company reps wanting to back the Miracle Network asked Hopkins to recommend a spokesman. When the hospital suggested Grayson, it stirred something in Kathy Nosek, a company official.
She well remembered the Kirschbaum photo and had always wondered what became of the boy in it. "When we met Grayson, he was a frail little thing, but he has the heart of a lion," she says. He has attended eight straight charity golf events for the company, helping drum up nearly $200,000 for the Network, and two years ago spoke to a thousand people at the national RE/MAX convention in Las Vegas.
"There wasn't a dry eye in the house," says Nosek, adding that Grayson refused to cancel even though he was so sick he could barely leave his hotel room. The weekend netted $350,000.
"All the pain this guy has been through? Grayson is my hero," his father says. "I look at him and think, 'if he can keep going, so can I."
Grayson Gilbert still faces an uncertain medical future. The varices could flare up, as could many of his prior conditions if he doesn't stay on top of them.
Dy says his condition is stable, that no road map exists but that Grayson should live a long life. "No doubt," agrees the patient, who aims for a career in public relations or films someday.
And the statue? Grayson isn't ready to ascribe it magical powers, exactly, but it was always an inspiration, in a way.
Long ago, probably during his first stay at the hospital, Grayson remembers seeing a doc in his surgical greens jumping up to give it a high-five. "I thought that was cool," he says. "I thought, 'I'll do that someday.' But it was way too high to reach."
One day a year ago, about to return home after one more hospital stay, he made the jump himself. His palm met one of the Divine Healer's. He hasn't been back since.