The county’s high child cancer rate remains a mystery
In researching GT’s recent cover story “How Healthy is Santa Cruz?” (7/30/14), I stumbled across a surprising truth: as of 2010, our county had the third highest rate of childhood cancer in California, sharing an annual rate of 20.9 cancer cases per 100,000 children with San Mateo County. While the rate dropped to 19.3 in 2011, (the most recent measure), it remains above the state average of 17.6 cases per 100,000—and apparently, this is nothing new.
“Consistently, over the last few years, we’ve trended higher than the state average,” says local Lori Butterworth, founder of Jacob’s Heart Children’s Cancer Support Services, which helps families of children with cancer. Butterworth founded Jacob’s Heart in 1998, when her friend’s five-year-old son, Jacob Judd, was diagnosed with acute myelogenous leukemia (AML) and given a 5 percent chance to live. “I started to make phone calls, about ‘a child has cancer, what are we going to do, where’s the support? How will his mother get through this?’ And I have to tell you, there was nowhere to turn, and it infuriated me,” says Butterworth. “Pediatric cancer is not rare, it just doesn’t get the attention it deserves.”
Judd survived, and the organization founded in his name continued to grow. Over the past 16 years, Jacob’s Heart has helped 524 local families of children with cancer, paving networks of support through the community as they go. And while 117 children have passed away, they are still honored and remembered by the organization.
According to the California Cancer Registry, about 23 percent of cancer cases statewide occur in people under 55 years of age.
White children are statistically slightly more likely to get cancer than those of Latino descent, but Latino children are more likely to die from it, says Butterworth—an inequity that Jacob’s Heart is determined to correct. “Our belief and our experience has shown that a lot of it has to do with language barriers and communicating with healthcare providers, navigating the healthcare system and access to information about the diagnosis and treatment options,” says Butterworth. Even families who speak English as their second language may not be getting all of the information they need, says Butterworth, who started a resource center in memory of Augustin Guillen, a boy who died of a cancer that would have been curable.
The most common form of cancer in children nationwide, as well as in Santa Cruz County, is acute lymphoblastic leukemia (ALL), but Butterworth says it’s common for people to assume there is just one kind of childhood cancer. In reality, the range of cancers is huge, from lymphoma to DIPG brain tumors—which no child has ever survived.
“I did my own research, and a lot of parents have to do that, because there’s a lot of rare cancer out there, it’s not all leukemia,” says Aptos resident Angela Farley, who actually found out the name of her 5-year-old son Charlie’s rare form of lung cancer before their doctor did.
When adults get cancer, the why is easier to explain—we’ve spent more time absorbing solar radiation and accumulating toxins from the environment, our food and lifestyle choices. It’s why adult cancer rates are much higher—435.4 per 100,000 in California, and 453.9 in Santa Cruz County for 2010, according to the National Cancer Institute. But for young children, there’s usually no explanation, except for a few cancers which are genetic, like retinoblastoma, a type of eye cancer.
“My son played with only wooden toys, I made his own baby food, steamed it and mashed it, and nursed him as much as I could. I used cloth diapers, I did everything I thought I needed to do to maintain a healthy child, and he still got cancer,” says Farley, whose son is now in remission after fighting off a rare form of lung cancer.
Although the gut reaction may be to blame agriculture, says Butterworth, she’s got other, more immediate concerns. “I think that we just try to blame things so we can feel safe, and there isn’t a safety. It’s random,” she says. “What we need to focus on, rather, is how can we support our community members who are in the trenches in this.”
The most important thing you can do for a child with cancer, says Butterworth, is support their families, who can become emotionally and financially strapped during the three years of treatment that is often needed. Her efforts haven’t gone unnoticed.
“When your child is diagnosed with cancer, there always has to be a parent that stays with the child, you can’t leave them alone and still go to work every day. You have to be there every minute because every minute things happen and things change,” says Michelle Marlow of Scotts Valley, whose daughter Emily, now 21, was the second child to be helped by Jacob’s Heart when she was diagnosed with leukemia at 4.
It was Butterworth who saw a newspaper article about Emily and reached out to the family. “And the next thing you know,” Marlow remembers, “she’s knocking on my front door, saying ‘I’m here to help you.’”
Because a cancer diagnosis can mean economic hardship for any income bracket, Jacob’s Heart works to offset some of the costs through private fundraising parties for families, gas cards for hospital trips, grocery deliveries and making sure the other children in the family have the support they need.
September is Childhood Cancer Awareness Month, and Jacob’s Heart is gearing up for four Sunday events to celebrate the children and families it has helped along the way, as well as spread awareness about childhood cancer. The “Kidrageous” events are on Sept 7, 14, 21 and 28. “One thing I always like to remind people is that children with cancer are children. There’s a way to love them and play with them and be part of their life,” says Butterworth.
For more information on Kidrageous events, visit www.jacobsheart.org