What do you do when your child dies? That was the question Jeff Towne and his wife Carin found themselves asking in early 2009 after their 3-year-old son, Benjamin Ward Towne died from a type of cancer known as neuroblastoma, a solid tumor that forms in the nervous system outside of the brain.
“What do we do with this?” Jeff Towne wondered in the wake of their loss. The Townes wanted to use what they learned to help others. “We were uniquely equipped,” Jeff said, “If we don’t, who will?”
While Ben was undergoing round after round of chemotherapy during his 18 ½-month treatment at Children's Hospital of Seattle, Carin began to blog.
“One of my favorite things to say to Ben is, 'Who is my boy?' He responds enthusiastically, 'BEN IS YOUR BOY!' I don’t know why, but it makes me joyously happy. In a moment of sadness yesterday, Jeff read my mind and said, 'Carin, he is still your boy.'”
She wrote of her son’s courageous fight and people tuned in. Jeff credits his wife’s ability to “communicate every raw detail of what was happening when it was happening. And people responded.”
“Amidst the pain and terror there have been moments of laughter," reads another blog post. "Today while walking Ben down the hall the Children’s clowns came over to try to entertain him. Upon their arrival Ben proceeded to projectile vomit numerous times. When he was finished he said, 'NO! NO BALLOONS!' So while cancer tries to diminish his spirit, he will be heard loud and clear."
Still another post reads, “We saw (a smile) tonight for the first time in almost two weeks. It literally took our breath away. A much needed reminder that our Ben is still here.
The Towne family set up a research fund for childhood cancer after being shocked when they found out how much money donated to child cancer research actually goes to researching a cure. While Ben was undergoing treatment, the Townes raised around $750,000 for research.
The Townes decided to begin a new research facility after Ben’s death, funded by the money they continued to raise through the foundation. They needed a researcher and head for the center and Dr. Michael Jensen of City of Hope, National Medical Center, director of the pediatric cancer program and co-leader of the cancer immunotherapeutic and tumor immunology department, was first on their list.
“We knew we shared the same visions and goals,” Jeff Towne said, “He is a terrific person and a visionary. The stars were aligned.”
The Ben Towne Center for Childhood Cancer Research was established in July 2011 at the already established Seattle Children’s Research Institute.
The Ben Towne Foundation is unique in that 100 percent of the donations to the foundation go directly to fund research at the center, emphasizes Jeff Towne. The foundation is privately funded.
“The relationship of BTF with the research center is truly a 'joined at the hip' enterprise that is synergistic and yielding already tremendous patient benefit,” Jensen said.
The research center is working on a new way to treat children’s cancer. Right now, Towne said, the treatment is “chemotherapy, radiation and surgery.” These treatments essentially attempt to “poison, burn or cut” away cancer. Towne hopes that one day we will look back at these treatments and think, “how barbaric, why did we do that?’
The new treatment would work as follows:
“A blood sample from the patient is received into the Therapeutic Cell Production Core, where immune cells called T cells are purified, reprogrammed with recombinant DNA and grown into billions of cells under FDA guidelines. The reprogramming instructs the T cells to make an artificial receptor that act like a “Velcro” molecule, allowing the T cells to recognize and attack cancer cells as if they were fighting an infection. The reprogrammed cells are reintroduced to the body through a simple infusion-and immediately go to work, hunting down and eliminating the cancer cells,” according to the Bentownefoundation.org/the_research_center/the_science.
Jensen hopes to make the cancer treatment and recovery processes less traumatic for children, even get them back to their regular lives within ten days of treatment.
The foundation helps to speed up the process of clinical trials as well. “Without funding, there could be a clinical trial every one, two or three years,” Towne said. The foundation is able to substantially speed up the clinical trial process. The foundation believes in the “stack effect,” pursuing multiple trials at one time. “We don’t want to wait years to try another one. We want to get it done as quickly as possible.”
“We do research to see if ideas are game changers,” said Dr. John Cunningham, chief of hematology and oncology, director of hematopoietic stem cell transplantation and vice-chair of the Department of Pediatrics at the University of Chicago. Cunningham believes the research being performed in Seattle “will be quite effective.” Cunningham also believes that if this research is successful, “it may reduce toxicity and the long term side effects current treatments have. It’s exciting for me.”
The newest trial the center is funding involves children who have relapsed and have already had bone marrow transplants. “There really is no other option,” for these children, Towne said. That’s where the new treatment comes in.
“For us, it’s not easy to wake up everyday and do this. At the end of the day, if we’re able to cure cancer it doesn’t bring back Ben, but other families won’t have to face what we faced," Towne said.