Seattle tests a new cure for pediatric leukemia

Jeff and Carin Towne lost their son to pediatric cancer. Now, thanks to their efforts, Seattle Children's is announcing the trial of a new treatment that could be a cure for pediatric leukemia.
The Towne family, before Ben's death.

The Towne family, before Ben's death. Jeff and Carin Towne

Ben Towne

Ben Towne Jeff and Carin Towne

Carin and Jeff Towne, founders of the Ben Towne Foundation

Carin and Jeff Towne, founders of the Ben Towne Foundation Seattle Children's Hospital

Dr. Rebecca Gardner

Dr. Rebecca Gardner Seattle Children's Hospital

Dr. Michael Jensen, director, Ben Towne Center for Childhood Cancer Research at Seattle Children’s Research Institute, at work in his lab.

Dr. Michael Jensen, director, Ben Towne Center for Childhood Cancer Research at Seattle Children’s Research Institute, at work in his lab. 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.


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Comments:

Posted Thu, Dec 13, 4:54 p.m. Inappropriate

It's stories like this that bring out the cynic in me. It was an interesting and familiar story that gets played out everyday it seems somewhere in America, and the statistics the author used merely confirms my belief that survival percentages are doctor speak for "your child has an outside chance when he/she really doesn't" which is code for "we should turn on the money faucet and check it out".

Don't believe me? So how could "showed dazzling promising" be considered dazzling? Hell-o, one out of twelve, in the example used, is less than 9% and to qualify for this type of treatment the child has to have a less than 20% survival chance. Which sound like essentially the child really has a zero chance of surviving their cancer. One would think that doing nothing ups the odds by 11% if the author really has her stats in order.

Djinn

Posted Sat, Dec 15, 12:05 a.m. Inappropriate

Leukemia is the number one cancer killer of children under 18 in this country. Not all of them respond to chemotherapy, some relapse many die. This new proceedure takes young patients who are about to die, where chemo has failed or they have relapsed with no good prognosis, and for $20,000, less than the cost of a stem cell transplant uses their re engineered T cells to kill thier cancer. The miracle is in many cases it works, children with no hope, two months from death are alive and cancer free a year later. Novartis, a cancer bio engineering lab is underwriting a 20 million dollar research center for the development of this treatment even though it will never be a big money maker for them. Dijinn while you cite statistics, i see lives being saved, for childeren who had NO OTHER OPTION. Yes there are failures, however this is just the beginning of the discovery of the possibility of the impact of this treatment, it can only get better.

Thank god there are foundations like the ben towne center, and money from novartis to improve what is a very promising proceedure that is already promising. Cancer is a war that patients fight bravely everyday. For my friend who died of a slower growing leukemia (CLL) there was no cure, however he started a foundation raising millions so that others may have a cure. This hope brings a new and brighter future to those whose life whould otherwise end too soon. There is even better news in cancer research, in many cases the cures are translational. That is what works for one cancer may help cure others.

I am so grateful there are many others who dont share your cynical nature. I am sure those who are alive but for this treatment feel the same way.

katzjamr

Posted Sat, Dec 15, 2:27 p.m. Inappropriate

sorry for the misspellings, i was tired and it was late, and dissapointed by the arrogance of the first post.

katzjamr

Posted Sat, Dec 15, 6:43 p.m. Inappropriate

The truth is never arrogant, uncomfortable yes. Parents need to know the truth without the doctor speak bullshift mixed in so they can make intelligent decisions about the fate of their children. Can you even grasp that concept? It's the parents call not yours or mine and certainly not the medical personnel.

Let's talk about your reading comprehension, the statistics I cited are from the article. Can't make up those kinds of numbers. Of course the writer might not have meant what she wrote, if so your beef is with her, but then agin, perhaps you didn't read the article first.

Now if you want some truly unsettling statistics try this, 200,000 preventable deaths each year under care by medical professionals and I'll bet you're more worried about gun violence.

As for thinking god for a foundation, if there was a caring god we wouldn't need a foundation or doctors or guns or ...

Djinn

Posted Sun, Dec 16, 3:22 a.m. Inappropriate

you make my point when you make up my "beliefs" about gun violence, that alone is bald faced arrogance. i read the article, and the one in the new york times more than once. my views are more formed by the survival rate quoted in the new york times story that follows the survival rate of seven people. this treatment is a last effort to save the lives of young people who are gravely ill and would otherwise die, i know it doesnt sound worth it to you but to me it does, i have met teenage cancer survivors who were not responding to any treatment and are alive because of a clinical trial.

katzjamr

Posted Wed, Dec 19, 3:34 p.m. Inappropriate

Is there a hairy faced arrogance?

I too feel that cancer care offers hope, but often without full disclosure of the odds. Having been involved with chemo recently with a friend, I silently watched hundreds of patients get hooked up to drip style medicines, all hoping to live. I want them all to live.

But it feels to me much like a huge medical experiment, where the patients bodies are treated nicely and politely, even lovingly, but the truth isn't talked out loud, and patients aren't really encouraged to ask more questions, the appointments are far too short for that.

Posted Wed, Dec 19, 8:42 p.m. Inappropriate

common1sense i agree that chemo can be barbaric, killing both cancer and healthy cells at the same time, and as you go through the process it seems like one step forward and two steps backward. for my mother it bought three years of quality of life, with a final year that i would rather forget. i respect those who opt for no treatment and have a shorter lifespan with a better quality of life.

i also agree with djinn that this article could be better written.

at the same time remember what we are talking about here, young people with agressive cancers who have less than a 20% chance of living. they are out of options and will certainly die. this treatment has reversed cancer at the end stage of their lives, and is less expensive than many treatments that have failed. rather than false hope, it offers a new possiblilty where none existed before.

katzjamr

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