Jeff and Carin Towne
Jeff and Carin Towne
Seattle Children's Hospital
Seattle Children's Hospital
Seattle Children's Hospital
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.
Called cellular immunotherapy, the experimental treatment involves drawing blood from the patient, reprogramming T cells extracted from this blood to find and destroy cancer cells, and then infusing the blood at room temperature back into the patient’s body. The demonstrated ability of a disabled form of the human immunodeficiency virus (HIV) to "get into a cell and insert a gene" will be used as the vehicle to alter the T cells, key cells associated with the body's immune system.
“It is our hope, as we develop and refine this targeted form of immunotherapy, that we can become less reliant on chemotherapy and radiation therapy that often cause lifelong debilitating side effects,” says Dr. Michael Jensen, MD, director of the Ben Towne Center for Childhood Cancer Research at Seattle Children’s Research Institute. Ultimately, the goal is to apply such revolutionary treatments to future therapies for patients with many types of cancer.
According to Seattle Children’s, the main objectives of this first phase of patient research are to determine the most tolerable dose of T cells to administer to a patient, to assess the treatment’s safety and to study the way the T cells work in treated patients. Dr. Rebecca Gardner, who will head the clinical trial, explains that three dose levels are planned; though patients may get sick, it should be a reaction that can be treated. A statistician will assist in setting acceptable dosage rates, and these findings will be incorporated into the protocol for future treatments.
Per guidelines set by the U.S. Food and Drug Administration (FDA) in their authorization of the trial, research subjects must be between the ages of 18 and 26 and only one patient may be enrolled in the trial every 30 days. Eventually, subsequent phases of clinical trials are expected to open to younger patients.
Following the T cell infusion, the patient will be followed intensely for six months, then less frequently over the next fifteen years. Incredibly, the cost of making the product for one child — described as clear liquid transported in a plastic baggie — is $20,000. This figure doesn’t even reflect the costs of research related to the development of the product. To put the number in context though, $20,000 is still far less than the cost of a stem cell treatment. Realistically, it’s also the case that only a small percentage of parents desiring this novel therapy for a cancer-sickened child would be eligible, at least at first, due to clinical trial restrictions.
Excitement related to the launch of this clinical trial — almost two years in the making— is both homegrown and connected to developments in the field carried out elsewhere, and recently published by CBS, CNN and the New York Times.
In Seattle, the speed by which the clinical trial has moved from concept to reality is largely due to the fact that research efforts, overseen by Dr. Jensen, received a $5 million gift from the Ben Towne Foundation. This sum followed a $1 million donation contributed in 2011 to the Center for Childhood Cancer Research to facilitate research aimed at obtaining FDA approval for the clinical trial (accomplished the following year), in addition to other support through funds and resources donated since Ben's death.
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