Wednesday, Dec. 5, 2007
by Melissa A. Chadwick | Staff Writer
For several hours one rainy November afternoon, Evan Lindberg sleeps.
The 4-year-old, a talkative, friendly, sandy-haired boy, is exhausted, no doubt a side effect of the cancer treatments he has been receiving for more than a year. Evan has stage-four neuroblastoma, an aggressive cancer that forms in immature nerve cells and is diagnosed in about 650 children every year, according to the National Cancer Institute, which is part of the National Institutes of Health in Bethesda. Only 30 percent of those diagnosed survive.
For the past year, Evan’s parents Gavin and Wendy Lindberg, have shuttled him between Memorial Sloan-Kettering Cancer Center in New York City and treatment at the outpatient facility for Children’s National Medical Center in Rockville. They are members of Band of Parents, a nonprofit devoted to raising money to advance treatments for neuroblastoma.
But in the living room of his Germantown home, Evan is a regular boy who loves all things with wheels, who zips around the living room with the speed of Lightning McQueen, the popular racecar from the movie ‘‘Cars.” A boy who says, ‘‘A cheetah runs really fast. Almost as fast as me.”
The Lindbergs knew there was something wrong with their son when he wouldn’t run anymore.
In September 2006, Evan’s leg hurt so much that ‘‘he didn’t want to stand or walk,” Gavin said.
A CAT scan on Sept. 19, 2006, found a tumor in his abdomen. The cancer had spread to his bones and bone marrow. That night, he was admitted to Children’s hospital Washington. Surgery followed on Sept. 22 and Evan started high-dose chemotherapy Sept. 25.
‘‘The disease in Evan was everywhere,” his father said.
In January, Wendy and Gavin took their only child to Sloan-Kettering where, one week a month for six months, Evan received antibody therapy invented by a doctor at the Manhattan hospital.
During the treatments, Evan was found to have NED or no evidence of disease, Gavin said.
The Lindbergs say that the antibody, 3F8, which is derived from mice and only available at Sloan-Kettering, is the best chance for a cure to neuroblastoma. The antibody attaches to the surface of the neuroblastoma cells which signals the immune system to attack the tumor cell and kill it, according to Sloan-Kettering’s Web site.
The Lindbergs, and about 100 other families with children who have neuroblastoma, formed Band of Parents, a nonprofit dedicated to expanding 3F8 research.
‘‘We’re throwing our energy and our passion into this Band of Parents because we feel if we can raise money needed to do this, then Evan has a fighting chance,” said Gavin, who is the group’s president.
Their fight got more demanding when, in August, after six months of the antibody treatment, Evan developed a resistance to 3F8. He could no longer be treated with the antibody.
Then, in mid-September, Evan started to complain that his hip hurt whenever he sat down and at night.
He had relapsed. Evan had 20 radiation treatments over 10 days.
‘‘Technically, as we sit here, there is no cure for relapsed neuroblastoma,” Gavin said.
A humanized form of 3F8 could help — children might not develop a resistance.
‘‘I’m convinced that 3F8 works, and if Evan could continue to receive it, he would, but he can’t,” Gavin said.
So Band of Parents is working to raise the $3 million they estimate is needed to research and humanize the antibody. They want to find a biotech to partner with Sloan-Kettering.
The nonprofit also gives these families an outlet, said Bethesda resident Donna Morris, whose son, Zachary, 6, has also developed a resistance to 3F8.
‘‘It’s hard to focus. It’s really hard to focus, because we’re in treatments, we’re in hospitals,” Morris said in a telephone interview. ‘‘But I need to focus and it helps me to feel like I’m helping my son and all these other children.”
All of the families in Band of Parents know each other through Sloan-Kettering and some met at the nearby Ronald McDonald house. Some have children with no evidence of disease, others have lost their children to neuroblastoma.
‘‘It’s just amazing,” Morris said. ‘‘People have put forth so much effort.”
Evan, who spent that rainy November morning at Epworth Preschool in Gaithersburg and the afternoon at the outpatient center, is groggy when he wakes up.
‘‘Every day I tell him he’s my hero,” Gavin said. ‘‘But he doesn’t know why, and that’s good.”
After some juice and granola bar, Evan dances around the coffee table. His favorite song is on in the background.
Evan is running again.
‘‘I could just stand here all day and watch him,” Wendy said. ‘‘It’s not just, ‘Oh, he’s running, ho-hum.’ It’s elation and thankfulness really.”
Band together
For more information about Band of Parents, visit www.bandofparents.org. The group’s cookie fundraiser ends Dec. 15. Also visit its auction at www.charityfolks.com and click on ‘‘Auctions” and ‘‘Band of Parents Foundation.” Items for bid include four tickets to The David Letterman Show with a backstage tour by Paul Shaffer, dinner for two in Las Angeles with actor Eugene Levy and tickets to Oprah.
