For every birthday he celebrated, Evan Lindberg had a surgery.
He endured 35 rounds of chemotherapy, 100 nights in hospitals and 25 rounds of immunotherapy that left him crying in agony for 30 minutes at a time.Since his death in October at age 7, after a four-year battle against neuroblastoma, his parents, Gavin and Wendy Lindberg, are on a mission to prevent other children from going through what their only son did.
On Saturday, they will launch the EVAN Foundation with EVANFest, a family fun day at Epworth United Methodist Church in Gaithersburg.
“My son endured an excruciating four-plus year battle with neuroblastoma and we learned a lot along the way,” said Gavin Lindberg of Germantown. “We learned there's a great, great need for additional research and additional need to support patients in treatment.”
Neuroblastoma, an aggressive cancer that forms in nerve tissue, contributes to 10 percent to 15 percent of all childhood cancer mortality, said Yael Mossé of Children’s Hospital of Philadelphia. Mossé was Evan’s pediatric oncologist.
It is one of the toughest cancers Mossé has ever treated.
Afflicting about 700 children younger than 5 every year, neuroblastoma comes in low- and high-risk forms. It is the most common childhood cancer found in infants younger than 1 and most of them can do extremely well, Mossé said. But older children are more likely to be diagnosed with high-risk neuroblastoma, which carries a 30 percent long-term survival rate, according to the National Cancer Institute.
Evan was 3 when he was diagnosed with stage four, or high-risk, neuroblastoma in September 2006, Gavin Lindberg said. The family had never heard of the disease.
“[The doctor] had this sobering look on his face,” Lindberg said. “It was surreal. One minute, your child is in preschool just like any other kid, and the next moment there's a pediatric oncologist telling you he has neuroblastoma.”
On and off for the next four years, Evan underwent painful treatments and operations, Gavin Lindberg said. But despite the pain he suffered, he had a spirit that didn’t let him become angry about his condition, Lindberg said.
Mossé remembered him as the vibrant boy with the great smile, perfect dimples and infectuous laugh.
“Despite the intensity of the treatment, he was a really resilient little boy who kept going,” she said.
The Lindbergs were driven to start the EVAN Foundation after seeing how little attention is paid to neuroblastoma and the lack of funding for pediatric cancers, Gavin Lindberg said. Out of the National Cancer Institute’s annual $5.1 billion budget, $200 million — 4 percent — goes to pediatric cancer research.
“Philanthropy is a huge part of how we physicians and scientists can take on novel projects without preliminary data and go forward,” Mossé said. “Kids like Evan are incredibly inspiring about the work we do.”
The EVAN Foundation— the name stands for Evan’s Victory Against Neuroblastoma — will carry Evan’s compassion and message of hope.
“I think that it provides an enduring connection to our son,” Gavin Lindberg said. “It's important to us to honor him. The best way we know is to help other kids dealing with a similar situation.”
nnourmohammadi@gazette.net
If you go
What: EVANFest, a fundraiser for the EVAN Foundation
When: Saturday, noon to 4 p.m.
Where: Epworth United Methodist Church, 9008 Rosemont Drive, Gaithersburg
Details: In keeping with Evan’s love of carnivals and fairs, EVANFest will include food, entertainment, games, crafts and face painting.
To learn more about EVANFest, neuroblastoma or The EVAN Foundation, visit www.theevanfoundation.org
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