Earlier this week, Carin and Jeff Towne discovered a long-forgotten container of soup in the deep recesses of their downstairs freezer: leftovers from a time when the idea of finding a cure for pediatric cancers within their sick son’s lifetime was considered the stuff of dreams rather than the near reality it has become today for a handful of other parents. Left on their doorstep, the meal would have been wedged in among a season’s stockpiling of foil-wrapped lasagnas and casseroles, the latest addition to a plethora of thaw-ready options that must have accumulated faster than stress-twisted appetites could keep up.
Four years later, the soup has been overtaken by ice-crystals and must be tossed, though well-meant. Almost four years have passed, too, since Jeff’s brother arrived with his pick-up truck, as promised, in the early-morning hours following their son’s death, to silently clear the house of the mountainous clutter of cancer-related items that had taken over every living space.
“Cancer R’Us,” is how Carin describes those final days, when Ben — reeling from the onslaught of a relapsed cancer that doctors deemed untreatable—was taken home to live out the short time left to him, and die. Her fleeting, tired laugh parallels that remembered scene of cluttered, unnatural chaos; her darkly electric streak of humor, seldom far from a conversation's surface, is a tool for coping with her loss.
A former theater actor, Carin sensed that her role within this dramatic narrative would test her capacity to feel, express and work on a new and disorientating stage. Jeff, too, a longtime pastor at University Presbyterian Church, who wouldn’t hesitate from walking with families through such a crisis, wondered how the experience would be changed for him as a father. As parents of a two-year-old diagnosed with high-risk Stage IV neuroblastoma (a particularly aggressive form of pediatric cancer), both understood that Ben’s life was no longer his own, and their job was to serve as a witness and an advocate for him.
Over the next year and a half, the tight-knit Towne family cared for Ben as he endured six courses of chemotherapy, surgery, a stem cell transplant, radiation and five rounds of anti-body therapy, in addition to innumerable other treatments. During and in-between hospital stays, Ben cultivated a love of matchbox-sized cars, tennis, golf and Husky sports. Photographs from that time show him gazing up gently from under the bill of a baseball cap, fatigue-rimmed eyes impossibly round and bright. His parents, meanwhile, became reluctant, then frantic self-educated experts on the subject of childhood cancer, even as they welcomed the birth of their second son, Ryan.
What Carin and Jeff discovered about childhood cancer shocked and disturbed them. According to the National Cancer Institute, pediatric cancer is the leading cause of death by disease among U.S. children under age 15, but pediatric cancers receive less than 3 percent of the NCI budget. In addition, pediatric cancers tend to be much more aggressive and rapidly progressive than adult cancers, so are more difficult, or impossible to treat.
The American Cancer Society explains that, “cancer treatments like surgery, radiation therapy, chemotherapy or bone marrow transplant, kill cells that grow quickly, such as cancer cells. But in a child, healthy cells in the bone, brain and other organs, are growing fast, too. Treatment can damage these cells and keep them from growing and developing the way they should.” Carin and Jeff’s decision in 2010 to set up the Ben Towne Foundation can be traced to these statistics and the hard reality such numbers stand for. Watching the way Ben's treatments, though meant to heal him, also ravaged his young body convinced his parents that traditional, incremental methods would not be enough.
But today a long-awaited announcement of hope, connected to Ben’s story and the stories of countless other children harmed or killed by cancer, was shared with the world: Starting this month, patients at Seattle Children’s with relapsed acute lymphoblastic leukemia (ALL), who aren’t responding well to chemotherapy and have less than a 20 percent chance of survival, can apply to be considered for enrollment in a new clinical trial that Seattle Children’s Research Institute’s doctors and researchers believe holds great potential in the search for a pediatric cancer cure.
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