Santa Cruz Good Times

Thursday
Oct 02nd
Text size
  • Increase font size
  • Default font size
  • Decrease font size

Early Detection

news2 cancerThe 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

Comments (2)Add Comment
...
written by CynthiaM, August 21, 2014
We lived in Ben Lomond for 3 years and did a radon test on our home, the numbers were through the roof. Everyone should test their homes, radon is known to cause lung cancer but not a lot of research has been done to see if it causes other cancers and it seems likely. Go to EPA.gov for information and how to purchase a discounted test kit.
...
written by Morris, August 20, 2014
I watched a Cousteau special some years ago which noted the high levels of fire retardants in California items such as fabrics, carpeting and most materials used to upholster furniture due to California laws. The entire crew had it in their blood and the child of one had the highest level. Apparently the chemical has been found in ocean mammals.

Write comment
smaller | bigger

busy
 

Share this on your social networks

Bookmark and Share

Share this

Bookmark and Share

 

On the Waterfront

As the wharf celebrates its centennial, a personal reflection on its essential place in Santa Cruz’s history

 

Rosh Hashanah

Rosh Hashanah, the Jewish New Year, occurs this year during Libra, the sign of creating right relations with all aspects life and with earth’s kingdoms. We contemplate (the Libra meditation) forgiveness, which means, “to give for another.” Forgiveness is not pardon. It’s a sacrifice (fire in the heart, giving from the heart). Forgiveness is giving up for the good of the other. This is the law of evolution (the path of return).

 

The New Tech Nexus

Community leaders in science and technology unite to form web-based networking program

 

Film, Times & Events: Week of September 26

Santa Cruz area movie theaters >
Sign up for Good Times weekly newsletter
Get the latest news, events

RSS Feed Burner

 Subscribe in a reader

Latest Comments

 

Melinda’s

New Capitola bakery takes gluten-free goods to the next level

 

Do you think you are addicted to technology?

Santa Cruz  |  Unemployed

 

Best of Santa Cruz County

The 2013 Santa Cruz County Readers' Poll and Critics’ Picks It’s our biggest issue of the year, and in it, your votes—more than 6,500 of them—determined the winners of The Best of Santa Cruz County Readers’ Poll. New to the long list of local restaurants, shops and other notables that captured your interest: Best Beer Selection, Best Locally Owned Business, Best Customer Service and Best Marijuana Dispensary. In the meantime, many readers were ever so chatty online about potential new categories. Some of the suggestions that stood out: Best Teen Program and Best Web Design/Designer. But what about: Dog Park, Church, Hotel, Local Farm, Therapist (I second that!) or Sports Bar—not to be confused with Bra. Our favorite suggestion: Best Act of Kindness—one reader noted Café Gratitude and the free meals it offered to the Santa Cruz Police Department in the aftermath of recent crimes. Perhaps some of these can be woven into next year’s ballot, so stay tuned. In the meantime, enjoy the following pages and take note of our Critics’ Picks, too, beginning on page 91. A big thanks for voting—and for reading—and an even bigger congratulations to all of the winners. Enjoy.  -Greg Archer, EditorBest of Santa Cruz County Readers’ Poll INDEX

 

Apricot Wine for Dessert

Thomas Kruse Winery, a participant in the new Santa Clara Wine Trail, has been around for a long time—since 1971, to be exact. When our little group arrived to try some wine at the Kruses’ low-key tasting room, Thomas Kruse and his wife Karen were there to greet us. Theirs is a small operation, and they’re proud to offer quality wine at affordable prices. “Because we are small and low-tech, it’s easy to relate to the whole winemaking process,” says Karen—and the Kruses take pride in making wine “just like it has been made for centuries.”