Mike Love wants back what every parent has — visions of the future — for his 2-year-old daughter, Taylor.
In an effort to make that possible for his child and other children diagnosed with the same rare cancer, he and six other fathers are cycling 3,700 miles across the country to raise money and awareness to get improved treatment.
“I’m thinking about her future: Taking her to school, teaching her to drive, walking her down the aisle on her wedding day,” Love said. “This disease is trying to steal that from me, and I’m trying to work to get that back.”
Taylor is one of several children at Memorial Sloan-Kettering Cancer Center in New York City diagnosed with neuroblastoma, a rare cancer that usually affects children.
Neuroblastoma affects the sympathetic nervous system, a nerve network that carries messages from the brain throughout the body, according to the Memorial Sloan-Kettering Cancer Center Web site. The cause of the disease is unknown.
The seven fathers, who have children with neuroblastoma, met at the hospital. They began The Loneliest Road Campaign on Sept. 10 in Sacramento, Calif., with the goal of raising $2 million to $3 million along the way. They are following U.S. 50 to Washington, D.C., and spreading their message at every stop. They ride anywhere between 150 and 300 miles per day, taking turns cycling and riding in their RV. They plan to arrive in Washington by Sept. 29. The fathers made a brief stop today in Columbia before heading toward St. Louis.
“What we’re doing is absolutely nothing compared to what our children go through,” said Alec Oughton, of Fredericksburg, Va. Oughton is the father of three-year-old Grace, who was diagnosed with neuroblastoma when she was 18 months old.
All of the proceeds donated to the group will go toward creating a more effective treatment for children with neuroblastoma. The current treatment for the cancer, called 3F8, uses antibodies derived from mice, which helps patients’ immune systems fight the cancer. But because this treatment is derived from mice, the body can develop a resistance to it. There is also some genetic disposition that limits the response to the antibody, Oughton said. The group has already raised between $150,000 and $200,000. Researchers will be able to make the treatment more compatible with humans using the $2 million to $3 million.
“I think one of the big issues with pediatric cancer is that there is not a lot of government funding because it’s rare,” Oughton said. “There is limited involvement and interest from pharmaceutical companies. We know that we have to work for it.”
“Our children may not benefit from this,” said Richard Brown, father of 6-year-old Jack. “We hope they will, but we understand they may not. We’re determined that children that are being diagnosed now and in the future should have the opportunities denied to our generation.”
Brown, who is from London, said Jack was diagnosed at 3-and-a-half years old. Jack was treated in London for a year. But when the Brown’s were told that the prognosis was that he was still going to die, they looked for options outside the United Kingdom and found the New York hospital. In November, he developed a brain tumor and had a bone marrow relapse. However, he overcame and is once again with no evidence of disease.
“They’re such marvelous children, and they fight so hard,” Brown said. “They go through extreme types of therapy and return as the same child they were before — full of love and life, and hope for the future.”
Direct donations may be made to The Loneliest Road Campaign at loneliestroad.org or by check to Grace Oughton Cancer Foundation, Attn: Loneliest Road Campaign, 9962 Brook Road, Glen Allen, VA 23059.