Griffin Marette calmly munches a snack cake as his fellow class officers discuss the emergency at hand.
Bethesda-Chevy Chase High School’s sophomore class has had to cancel its hot chocolate fundraiser because of the regulation of food sales during school hours. Griffin’s classmates exchange grim looks as they debate how to reschedule it as an after-school event.
Griffin, the class president, chimes in occasionally, offering to edit a new advertisement for the sale, waving away the money he already has spent for cups. But mostly he sits back and listens, exuding quiet leadership until the meeting concludes.
At 16, Griffin doesn’t get wrapped up in trivial high-school problems. This is what his teachers are talking about when they say he is positive and easygoing in the face of adversity. It’s what his dad means when he says his son is unusually mature after spending his childhood around adults, mostly oncologists at Children’s National Medical Center in Washington, D.C., where he was treated for a rare form of leukemia as a toddler.
The calm, upbeat demeanor belies Griffin’s 5-foot-3-inch stature, the catch in his walk, his bowed left leg—all results of the radiation and chemotherapy that preceded a bone marrow transplant that saved the Chevy Chase boy’s life. It makes Griffin—straight-A student, goalie for the junior varsity soccer team and left wing for the hockey team—seem to the outside world what he and his family yearned for him to be: absolutely normal.
Until shortly before his third birthday, Griffin was a typical toddler who loved toy trucks and building blocks. But in September 1996, he came down with a cough he couldn’t shake.
Griffin was sent home sick from day care several times, and one afternoon his mother, Billie-Jean Bensen, took him to the emergency room at Holy Cross Hospital in Silver Spring, fearing bronchitis or pneumonia.
Griffin’s chest X-ray was fine. But his blood work was “wacko, off the wall,” says Bensen, now principal at Herbert Hoover Middle School in Potomac. “They said, ‘We need you to go to Children’s Hospital, now.’ ”
Doctors initially suspected a blood infection. A few hospital visits later, on Oct. 12, 1996, Griffin was diagnosed with juvenile chronic myelogenous leukemia, a rare form of blood cancer whose only hope for a cure was a bone marrow transplant. Juvenile chronic myelogenous leukemia accounts for fewer than 5 percent of the leukemias seen in children, according to Dr. Patricia Dinndorf, then an attending physician at Children’s.
Patients exhibit a variety of symptoms, from easy bruising and nosebleeds to fatigue and recurrent infections. Dinndorf says the cancer can be genetic, but there was no indication Griffin was genetically predisposed.
Even with a perfect match for a transplant, the chances of success are only about 50 percent, Dinndorf says. But “at the time, if you didn’t have a transplant, you died from this disease,” she says.
The first piece of good news on the emotional roller coaster that would define the next several months: Griffin’s 6-year-old sister, Terryn Marette, was a perfect match for the bone marrow transplant.
The first of many pieces of bad news was that the transplant would have to be postponed for weeks as doctors removed his enlarged spleen, which was full of leukemia cells, then biopsied a section of Griffin’s lower right lung to test for infection. The spleen helps ward off infection, and Griffin still takes an antibiotic daily in its absence.
“Seeing your child wake up from anesthesia at age 3 with tubes coming out of him was difficult,” Bensen recalls, “but it’s almost more upsetting to me now than it was then. Everything happened so quickly, and we were just totally focused on doing what we needed to do to make him better.”
On Dec. 12, 1996, exactly two months after Griffin’s diagnosis, the family finally headed to Children’s, where Griffin underwent a week of radiation and chemotherapy to destroy his bone marrow before the actual transplant.
On the day of the transplant, doctors anesthetized Terryn, then used large needles to harvest marrow from her hip bone. Now a sophomore at Wagner College in New York, Terryn remembers being sore for the rest of the weekend. But mostly, she remembers being terrified on the drive to the hospital, crying and wondering if she’d wake up again after doctors put her to sleep.
“At the same time, I remember thinking I was going to do anything to help him,” Terryn says.
Griffin received an infusion of the marrow the same day.
The first test results came back on Christmas and suggested the transplant was working. But the roller coaster started up again a few weeks later, when the hospital’s chief oncologist said Griffin’s body wasn’t making healthy blood cells that came from the donor bone marrow—a sign the transplant wasn’t working as well as doctors had hoped.
“He’d be great at noon, but then we’d get news at 6 p.m. that would make the whole day trash,” says Griffin’s father, Don Marette, who works in construction management. “Your whole world would change in the period of a few hours.”
Griffin had been in the hospital for months by this time. Bensen and her husband saw their normally rambunctious kid fall into a severe depression, wanting only to be held and rocked for hours on end.
“One day I got the ‘we can keep him comfortable as he passes on’ speech,” Marette says. “He had gotten to the point where he was losing his will to live, and we worried that if that happened, he would physically take a turn for the worse.”
The couple tag-teamed, with one parent staying home with Terryn, and the other staying at the hospital with Griffin. They’re often asked how they coped.
“I always say, ‘What do you mean, how did we do it?’ ” Bensen says. “We didn’t have any choice. That was all we knew.”
By late January, test results were more encouraging. By the end of the month, Griffin was able to go home.
Today, Griffin has only a few recollections of that time. He remembers his parents setting up a Christmas tree in his hospital room. He remembers walking down a hallway with his IV. He remembers a nurse who would tickle him to cheer him up. He remembers his parents telling him his blood “wasn’t working right,” and that his sister would help make it better.
Other than that, “I don’t think I understood anything about what was going on,” Griffin says.
That changed in first grade, when the effects of the heavy radiation and chemotherapy he received as a toddler became apparent.
First, his parents noticed, he walked like a duck—many of the joints on the left side of his body had fused, and his feet were flat, leaving him with little mobility. In sixth grade, the growth plates in his left leg closed unevenly, causing his leg to bow out at a 23-degree angle at the knee.
