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.
In addition to the Towne’s extended family, local people of diverse backgrounds, ages, and experiences have given what they could to the initiative. They have proved creative in their approach, giving lemonade-stand proceeds and bags of Callie’s Coffee and setting up Ben Towne Foundation chapters on the Eastside and in Idaho to increase public interest. These small and large efforts have added up.
The proof is most obvious when you visit the cancer center that Dr. Jensen now calls home; located in a gritty corner of urban Seattle, and flanked by food marts, car lots and a freeway onramp, the secured building features at its symbolic center a Therapeutic Cell Production Core. The Core is a good manufacturing practices (GMP) bio-factory or “clean room” that facilitates the acceleration of the T-cell therapy approach from the lab to the clinic, according to the strict standards of the FDA.
Renamed the Ben Towne Center for Childhood Cancer Research in 2011, this GMP facility “is one of only three GMPs in the nation that is owned and operated by a freestanding children’s hospital … and is the only GMP facility on the West Coast dedicated to pediatric research,” according to Seattle Children’s. The long window that gives onlookers a glimpse off the room's unpeopled, sterile interior is strangely reminiscent of a hospital nursery from long ago, showcasing state-of-the-art equipment — rather than a tidy row of bassinets — just waiting to carry out its purpose.
Clinical trials conducted at a handful of other hospitals in the country have showed dazzlingly promising — though far from comprehensive — results. Emma Whitehead, one of 12 patients to undergo T-cell immunotherapy at the University of Pennsylvania as a final effort to combat twice-relapsed acute lymphoblastic leukemia, is now in remission and has been featured in many national news reports for this reason. She will be declared cured if she remains cancer-free for two years. That said, individual therapies have still only been applied to a very small number of people, and other patients have responded differently, or not at all, to the treatment.
Dr. Rebecca Gardner, a specialist in pediatric oncology, has been entrusted with guiding similar efforts here. Sitting forward at her desk, she explains, “This is group work, and we take credit for what’s accomplished together…Building this kind of an environment here is very important.”
One of Gardner’s favorite things about her job is swapping input and ideas related to experiments with other doctors in the open spaces provided by the center. A few offices down, she and Dr. Jensen had just exchanged a few words in the hallway; Dr. Jensen, cradling his jaw with one hand due to a root canal procedure carried out only hours before, had seemed eager to get back to work.
“I’m so lucky that I’m starting my career at this point of time, when the field is about to take off,” she explains. “We are finally seeing sustainable, promising, repeatable responses… Dr. Jensen and those colleagues at his level have stayed devoted to the field despite it not moving forward at the pace some people would have liked. [Where we are now] is a tribute to their drive.”
Doctor Gardner also credits the Internet for encouraging greater information-sharing between researchers and hospitals. Now that medical details can be quickly shared with a public audience through websites and personal blogs, research meant to be kept confidential until after findings are officially published are now often shared unknowingly by concerned family members and friends of patients.
Over the course of her treatment, Emily Whitehead’s family accumulated a large Internet following, and even though Emily’s doctors hadn’t yet officially pronounced her treatment a success, the word of her recovery spread. Armed with this knowledge, parents of patients at Seattle Children’s began requesting the therapy – a surprise to Dr. Gardner, who began investigating of her own accord.
Only when Dr. Gardner is asked directly about her family does she allude to the fact that she’s also a parent to an infant and a preschooler. The topic of parenthood brings a level of emotion to a conversation that was decidedly clinical only a moment ago. Her voice lowering, she admits that though she “has always had empathy, once you become a parent, this empathy is taken to another level. It’s hard, but [this job] also makes me a better parent.” She adds, “If the kids eat chocolate before dinner, for instance, I let it go.”
It’s a lesson Jeff and Carin learned too, along with the devastation of their loss. Learning about how they moved on from that loss — whether through their foundation or through the blog Carin faithfully updated — is to be drawn into the circle of a conversation-turned-movement that is as much touched by Ben’s presence as it is energized and propelled forward by the mission that his absence points to. People who loved Ben may speak of him in the past tense, but there’s a distinct quality to those remembrances that are firmly rooted in the present, connected to today.
Like his parents, Ben’s younger brother Ryan, (too young at the time to remember his brother, except through familiar stories and photographs) is serious when it comes to packing his “briefcase” and heading off to a corner of his playroom for meetings and events. He knows that his parents often talk into microphones and are trying to find better medicines for children with cancer. He understands that this work means too that his parents are busy, on-the-go people: answering emails before dawn, squeezing in phone calls during their son’s bath-time, attending functions and standing on a distant stage. Like Ben, Ryan has seen a side to life that few boys his age experience, which makes him a witness too.
His parents know and struggle with the fact that even Ryan didn’t emerge unscathed from months spent playing under the shadow of his brother’s impending death. Tears and laughter, in not always equal measure, were the sounds that accompanied Ryan’s first years of life: lullabies overwhelmed by wails of pain that only parents who have experienced the death of a child can fathom. It’s why the Towne famiy spends almost every weekend at their cabin in Poulsbo, on aptly named Liberty Bay, to disconnect the phone and the internet, take walks on the beach and, through their living child, remember what it feels like to dare and chase, dream and play.
For questions about the trial, contact Seattle Children’s Cancer and Blood Disorders Center at 206-987-2106.
