From Deseret News archives:
Fathers ride 'loneliest road' to raise awareness
Their children are battling rare cancer neuroblastoma
But the magazine got that wrong, according to six fathers who pedaled along it this week on a cross-country trek that will take them from Sacramento, Calif., to Washington, D.C.
The men Alec Oughton, Mike Love, Rick St. John, Randy Monroe, Kevin Sims and Ven Davis are calling their journey "the Loneliest Road Campaign." When they reach Denver, another dad intends to join them.
The loneliest road, they say, is the one traveled by children who are battling rare and potentially lethal cancers. They know this, because each one has been there as his own child fights to survive neuroblastoma. They know well the chemo and radiation and antibody therapy, the seeming cures and relapses and small victories and saying goodbye to other dads whose children didn't make it.
Those moments that make up the road trip through cancer are what they talked about Friday morning during a brief stop at Fire Station One in Salt Lake City, before hitting the road to Denver.
They started Sept. 10 on a 3,700-mile relay to try to raise both awareness of the cancer and $3 million for a promising therapy that offers hope of survival to their children and at least 600 others who have the disease each year in the United States.
Neuroblastoma is a "relatively rare cancer of the sympathetic nervous system," according to a description by Memorial Sloan-Kettering Hospital in New York, where the men all met as their children have undergone repeated treatments. Its cause is unknown, but most doctors believe the tumors result from "accidental cell growth" that occurs during development of the adrenal glands. Tumors appear in different locations. Some go away by themselves, others can be removed with surgery. But half spread to other parts of the body, including the bones and bone marrow.
It's a tough cancer to detect, often unnoticed until it's far advanced. Monroe's daughter, Marissa, 2, of White Pigeon, Mich., had a persistent black eye for no apparent reason. When they found the tumor in her abdomen, it was a "four-pound tumor in a 20-pound kid." But it was tucked away among other organs and not obvious.
Love, from Ashburn, Va., said daughter Taylor, 2, looked as if she had lazy eye. Instead, doctors found tumors.
Codey, 6, son of St. John of Bellaire, Ohio, had abdominal and leg pain. Doctors eventually found a large mass in his abdomen.
As Davis rides, he's acutely aware that the treatment they hope to fund could be his 5-year-old son, Kai's, last hope. The boy, diagnosed in 2005, has undergone nine rounds of chemo, a bone marrow transplant and various radiation treatments. The family is from Faith Hill, N.C.













