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'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
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.