ConnectOC Blog

Helping Kids Not Only Survive but Thrive after Pediatric Cancer

Posted by: Orange County Community Foundation on 9/27/2016

In 2009, Susan and Steve Giusto entered a world no parent ever expects when their daughter Cathryn was diagnosed with neuroblastoma, the second most-common form of solid tumor in childhood. Of the nearly 16,000 children diagnosed annually with pediatric cancers, 2,000 will not survive, and three of five survivors will develop health complications—some fatal-- as a result of the cancer treatment they are undergoing to save their lives. Through The Friends of Cathryn Fund, the Giustos are working to address this heartbreaking dilemma.

Cathryn was 5 years old when she began to complain about back pain, and Susan realized her usually lively kindergartner seemed to tire easily. Although the initial slate of tests all came back normal, she pressed doctors for a diagnosis and was terrified when she ultimately learned the cause of her daughter’s nagging pain and fatigue.

“We had never even heard of neuroblastoma before,” Giusto explained, soon finding out that their daughter’s pediatric cancer began as the neural crest tissue was developing in utero.

“Cathryn received the best treatments at CHOC Children’s and Children’s Hospital Los Angeles,” where she spent 13 months battling the disease wreaking havoc on her small body. “We were lucky,” Giusto said. “We saw many other kids die while she was hospitalized – not only from cancer but also from the toxic side effects of the most-common treatments, which can introduce other diseases or disorders. Two of Cathryn’s hospital roommates, one 3 and one 13 years old, died during their treatment processes. We decided that when Cathryn recovered, we were going to dedicate ourselves to funding research for less toxic treatment for kids with cancer.”

The Laguna Beach family made good on that promise by establishing The Friends of Cathryn Fund at the Orange County Community Foundation. Its mission is to raise funds for a consortium of highly respected pediatric cancer researchers based at 13 of the top U.S. children’s hospitals called NANT, or New Approaches to Neuroblastoma Treatment. To date, The Friends of Cathryn Fund has raised more than $700,000 for NANT’s innovative research and hopes to raise at least $100,000 more this year.

Now almost 13, Cathryn also advocates on behalf of pediatric cancer patients. “She wants kids to survive cancer as she did, and she wants them to suffer less during the process and after,” Giusto said. According to CureSearch, 60 percent of children who survive cancer suffer devastating “late effects” from chemotherapy, radiation and other treatments, including secondary cancers, muscular difficulties and infertility.

The plucky seventh-grader emerged from treatment with some residual hearing loss, but that’s minor compared to most kids. According to Pediatric Cancer Research Foundation (PCRF), the current treatments for neuroblastoma and other forms of children’s cancers often include long-term and even life-long side effects, such as hearing loss, heart damage, growth deficiency and dental challenges, to name a few.

“The toxicity and efficacy of treatment for children have to be improved,” said Jeri Wilson, executive director, PCRF. “Two-thirds of kids have long-lasting chronic conditions from the treatment.”

Despite the grim statistics – every day, 43 children are diagnosed with cancer and the average age of diagnosis is 6 – there’s a spark of hope thanks to work being done by organizations like The Friends of Cathryn Fund and PCRF.

“The whole landscape of how a pediatric patient is treated is changing,” Wilson explained. “When we began 35 years ago, there was about a 30 percent chance of survival for most pediatric cancers. Today, there’s nearly a 90 percent chance of survival, but for many rare childhood cancers, the survival rate is much less.”

Wilson points to advancements in research as the driver but emphasizes the need for private funding. That’s because the National Institutes of Health funds only 3 percent of all pediatric cancer research currently being conducted, with the remainder depending on private funding.

Since its establishment in 1982 as a grass-roots organization, PCRF has focused its efforts to improve the care, quality of life and survival rate of children with malignant diseases. The founders, comprised of parents, physicians and community leaders, joined forces to support laboratory research that would translate into immediate treatment for children with cancer. 

“The other 97 percent of the research out there has to be funded by someone else, like The Friends of Cathryn Fund and PCRF,” Wilson said. “There’s been only one new pediatric cancer drug introduced over the past 20 years. Research is dismally funded by the federal government, and there’s not a lot of ROI for pharma companies because pediatric cancer only affects 1 percent of the population.”

“However, I tell people that funding research is imperative as children diagnosed with pediatric cancer are only 1% of the population, but they are 100% of our future.,” she said. “They deserve a chance. They deserve to go to school. They deserve to grow up. Being involved with pediatric cancer means changing the life of a child.”
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