The Trial of His Life
10/13/2003 at 01:00 AM EDT
Davon Hill didn't want to be a guinea pig. But it was his best chance of staying alive. An outgoing 12-year-old, he had been diagnosed with Hodgkin's disease, treated and gone into remission. Then, unexpectedly, it came back with a vengeance. That's when doctors gave Davon and his mother, Michelle, a choice: Davon could receive traditional care—the gold standard of what medicine currently has to offer—or volunteer for a clinical trial of a promising, yet untested, new treatment.
Like millions of Americans every year who participate in clinical trials, Davon, now 14, and his mom opted for the unknown. PEOPLE followed them for a year to find out what it's like to take a risk based on one part science, one part hope.
Davon, his mother and Dr. Kara Kelly, an oncologist at Children's Hospital of New York-Presbyterian, gather in a treatment room on the hospital's seventh floor. A biopsy of suspicious-looking tissue in Davon's chest had tested positive for Hodgkin's. "I thought we had already been through this," says Michelle. "I always told Davon, 'It's gonna be okay, you're gonna be a normal 12-year-old,' and here it was happening again."
Just six months earlier Davon had completed treatment for Hodgkin's disease, a cancer that invades the lymph nodes. It seemed to be going well—"His disease melted away very quickly," says Dr. Kelly—but now the illness was back. Michelle and Davon Hill faced a serious decision. There were the standard treatments of more radiation and chemo. But the hospital was also conducting a number of clinical trials, including a pilot study of double stem-cell transplants to bolster the immune system and rid the patient's body of cancer. By joining in the hospital's closely monitored clinical trial, Davon could get tomorrow's care today at no cost. At the same time, as part of the bargain, the hospital would learn more about a groundbreaking treatment regimen by carefully watching his progress.
Michelle asked her son what he wanted to do. "I said, 'Mommy, you decide,'" he recalls. Michelle, a single mother on disability (whose medical bills are paid by Medicaid), eventually decided to enroll him in the study—Children's Hospital's trial CHNY-01-501. "It was either the transplants or nothing," she says. The treatment began without delay.
It's only two miles from the Hills' three-bedroom apartment in a Harlem project to the bluff-top campus of Columbia-Presbyterian Medical Center, but a different world entirely. Autumn sun streams into a sparkling outpatient transfusion room, where Davon, half-reclining in a chair, watches as blood flows through a plastic tube into a catheter surgically implanted in his chest. "I feel fine," he says.
In fact he has already been through a lot. Three courses of high-intensity chemo have attacked his cancer but also seriously damaged cells vital to his survival. Underneath his Sean John baseball cap, Davon's tight-knit braids have fallen out. But he's now in remission. Within a couple of weeks he is strong enough to undergo a transfusion to remove stem cells—basic building blocks found in the blood that can rapidly grow into a variety of cell forms. After even more chemo, doctors will return the stem cells to Davon's body to help jump-start his dangerously depleted immune system. "The doses of chemo he gets during the transplant are high enough to permanently damage the blood cells," explains Dr. Kelly, "so after the chemo we give back the cells we've saved to rescue his system."
Rap music and hip hop blare in Davon's hospital room as a wine-red solution containing the stem cells courses into his body from a bag suspended in the air. A nurse offers him lollipops to counter the bitter, garlicky taste that often wells up in the patient's throat during the transplant. But Davon was hardly bothered: He even managed to stand on his knees and show off his dance moves to a crowd of doctors, nurses and aides. "He was the star of 10 South," says Michelle, referring to Davon's hospital ward. And after several weeks of close observation he has even more reason to be happy. "There's gonna be a bowling party for all my friends," he says later, as he gets ready to go home after nearly four months at the hospital.
As a particularly long and wet winter gets underway, Davon's ordeal starts to weigh on his family. The man he calls his stepfather, Butch, moved out of the house before Christmas, never to return. Michelle says he had his own health problems and that she feels betrayed by his departure. For his part, Davon says, "I never liked him in the first place." Davon's father, David Hill, 44, a bus driver, lives in Maryland.
At the hospital, transplant specialists conduct a worldwide search for stem cells for Davon's second transplant before zeroing in on a young donor in St. Louis. But first, Davon is ordered back to the hospital for radiation as a precaution to make sure all of his cancer has been eradicated. It comes as a shock. "I'm upset," he says. Ahead: daily trips to the radiation lab that leave him feeling tired and, back home, the television, which Davon, by nature curious and buoyant, now watches as if in a daze. His mother, who has mastered details of the complex treatments and accepted every decision made by the doctors, is on the verge of anger. "I feel like the doctors are using my son as a guinea pig," she says.
The transplant must wait until Davon is free of infection. Cut off from friends and school in his family's apartment, Davon sleeps at odd hours and watches television deep into the night. One of his favorite shows is a Japanese cartoon that airs on cable at 1:30 a.m. "It's about a little boy," he explains. "He's 14 and he dies, but he makes this deal where he gets to come back alive but has to do work. He has to kill demons and monsters with his Spirit Gun."
MAY 8, 2003
The day of the second stem-cell transplant finally arrives. Of all the care he has received, this is the most experimental. Human cells tend to fight off other cells they view as foreign, and researchers have observed that transplanted donor stem cells will seek out and kill cancer cells left over after chemo and radiation—a phenomenon known as graft vs. Hodgkin's effect. That's what they hope will happen for Davon.
His doctors gather in his cramped room as the stem cells are "pushed" into his body. Suddenly Davon's blood pressure starts to rise, then rises higher. He falls speechless and his eyes close. "I don't like it," says Michelle, wiping tears from her eyes. She has been by Davon's side constantly, sleeping every night in his room. She is exhausted. The physician in charge, Dr. Mary Brigid Bradley, calls for a medication. After 15 minutes the boy's vital signs begin to return to normal. "The crisis is over," says a nurse.
Other crises will likely follow. With cancer there are no guarantees. Still, today Davon is back home, disease-free. "I've come to see he's stronger than I am," says Michelle. Davon's doctors are learning too. Of the six gravely ill children enrolled in the Children's Hospital study so far, five are doing well; sadly, one has died. "Our goal is to cure Davon, that's the most important thing," says Dr. Michael Weiner, the hospital's chief of pediatric oncology. "And with innovation and by using something novel, we're hoping to improve the chances of children down the line." As for today's patient, except for minor side effects and the need to return for checkups twice a week, he's feeling like a normal 14-year-old for a change—dreaming of appearing on a reality show and, in the meantime, looking forward to starting high school in January. When asked about his future, he turns serious—but doesn't hesitate. "I'm gonna be all right," he says.
PATRICK ROGERS in New York City