Parents Persuade Calif. Senate to Shed Light on Children’s Cancer

Juliana Peña’s constant smile brightened the days of everyone she came across, even those who just caught a glance of her.

At two-and-a-half years old, she passed away from neuroblastoma, a rare pediatric cancer. “As she was taking her last breaths, I promised Juliana that we would never stop fighting for her,” recalls her father, Jesus Peña. “And I promised that every day of my life someone would say her name.”

Peña and his wife, Patricia Watson, have been keeping their promise ever since. They started the Juliana’s Journey Foundation to help find a cure for neuroblastoma and support families facing pediatric cancer. And they recently persuaded the California Senate to declare September “Children’s Cancer Awareness Month.”

“The only childhood cancer you hear about is leukemia,” says Peña. “When Juliana was diagnosed we’d never heard of neuroblastoma,” adds Watson. “We don’t want other people to be in that same position. We want them to be aware there are many childhood cancers.”

When at 22 months Juliana stopped wanting to walk or eat and started losing weight, her parents knew something was very wrong.

Several doctor visits later, she was diagnosed with high-risk neuroblastoma. She initially received treatment at other hospitals in the Bay Area, but was referred to UCSF Benioff Children’s Hospital San Francisco for her bone marrow transplant. “Those 10 months of Juliana's life were intense, but you'd never know it. She was strong, perseverant, happy, demanding, and relentless,” says Watson.

In late 2011, Juliana persistently complained of stomach pain. Tests at UCSF confirmed she had relapsed, and Juliana passed away in late February 2012.

Through Juliana’s Journey Foundation, which raises money through donations, restaurant-sponsored dinners, raffles and merchandise, they recently gave $15,000 to UCSF’s Kate Matthay, MD, a pediatric oncologist who is an expert in neuroblastoma.

“We chose UCSF because we really liked the nurses and doctors we met during Juliana’s treatment, and we knew Dr. Matthay was a big deal in the neuroblastoma world. She has been so welcoming and appreciative of everything we have done,” says Watson.

The funding is enabling Matthay and her collaborator, Clay Gustafson, MD, PhD, to test different combinations of chemotherapy and molecularly targeted drugs on neuroblastoma cells with a goal of finding a more effective treatment for high-risk cases like Juliana’s. “I can’t think of a more positive way to honor their daughter,” says Matthay, who holds the Mildred V. Strouss Endowed Chair in Translational Research in Pediatric Oncology.

"I hope in 100 years people still know who Juliana is and why,” says Peña.

Photos courtesy of Peña family