The trauma of a child’s cancer casts a long and fearful shadow across a family — fraying nerves, stressing budgets and exhausting options.
Jacob’s Heart knows it can’t cure disease. But the Watsonville-based organization does the next best thing by lending a helping hand to ease families’ Job-like series of trials, offering emotional, practical and financial support for families of 325 suffering children, from Boulder Creek to King City.
Some families just need advice and a shoulder to cry on. Others face much more daunting futures, with unexpected travel, steep medical bills, job loss and emotional unraveling.
Of Jacob Heart’s many offerings, there’s one annual event that unites everyone, lightening their lives: a weekend summer camp called “Camp Heart + Hands” in the Santa Cruz Mountains.
Supported by gifts and donations, it’s a place where sobering realities recede. Families think about fun, not sickness.
It’s free for families, but expensive to run. Counselors engage children in games and glory, while depleted parents get massages, go for hikes or gather for conversation. There’s an pediatric oncologist on site, as well as trained nurses.
“For a couple of days, you don’t have to think about cancer. You don’t have to think about paying your bills,” said Jennifer Watson of Prunedale, whose daughter Elizabeth, nicknamed “Effy,” was diagnosed with leukemia when she was 2 years old. Now 6, Effy has completed treatment — but still looks forward to camp.
“There is so much focus on the family,” Watson said. “By supporting us, they know we’re better able to support our kids.”
Camp starts in the parking lot, where all families are warmly greeted. The camp staff then carries their luggage, parks their cars and walks them to their cabins.
Once inside the camp, the children with cancer and all their siblings are invited to play games, while the parents relax.
There’s a carnival on Saturday, with swimming, painting, rock wall climbing and other activities. On Sunday, there’s a live performance with dancers and drummers. A highlight of the weekend is a big bonfire.
“We work to restore a sense of safety and security,” said Lori Butterworth, the organization’s founder and executive director.
Jacob’s Heart started in Butterworth’s kitchen. Arriving home after a long day of teaching at Soquel High School on Feb. 4, 1998, she discovered her answering machine filled with distraught messages from friends. Jacob, the adored 5-year-old son of close family friends, had cancer.
She organized a gathering that raised $40,000, enough money for Jacob’s mother to stop working and stay by his side while he underwent yearlong treatments.
And the seeds were planted for a new organization. Because Jacob’s Heart relies on volunteers and donated services, every $1 donated yields $2 in impact, Butterworth said.
“It was a brilliant intuition,” said Jacob’s father, Brian Judd. Stunned by the cancer diagnoses, “families often have no idea what their needs are — or how to build a system of support.”
To find the offices of Jacob’s Heart, you exit Highway 101 and pass vast vegetable fields of stooped agricultural workers, then turn a corner near Dole Food’s cooling operations and Martinelli’s packing houses.
Entering the offices is like discovering another world: brightly colored walls, playhouses, clean new clothes, toys, holiday decorations, tables of full grocery bags and the welcome of volunteers.
The walls are covered with photos of kids, the kind you can’t resist. With innocent eyes and wide smiles, they’re often held in the photos by weary parents whose inner scaffoldings struggle to stay strong and brave.
Some images honor children who are gone, like Augustin Ramirez, Bianca Lamas and Hernan Jimenez. Others celebrate lives only briefly interrupted — children who are now in remission or even recovered. The organization’s namesake, Jacob Judd, is now 24, living in Atlanta and planning a career in TV and film technology.
More than 15,000 new cases of cancer will have been diagnosed this year in Americans 19 and younger, according to the National Cancer Institute. While the overall outlook for children with cancer has improved greatly over the last half-century, it remains the leading cause of death by disease past infancy among U.S. children.
Childhood cancer carries a special set of psychological, financial and emotional challenges, upending our notion of what youth is all about. Instead of pony rides, Little League and parties, children may face chemotherapy, surgeries, radiation, nausea, deep fatigue and depression.
After they get the devastating news, parents often discover there are few roadmaps to lead them through this new reality. It’s especially hard for Spanish-speaking families or those without the resources to make frequent trips to Stanford, UC San Francisco or UCSF Benioff Children’s Hospital in Oakland.
Jacob’s Heart provides assistance to pay for rent, utilities, phone service and other expenses. It delivers groceries and hands out gas cards. It helps families navigate the maze of medical services. It offers guidance for hospital visits and new routines at home. For emotional well-being, it provides peer-to-peer counseling, support groups, activities and grief counseling.
Even when a child is lost, the effort continues, with a memorial service every year.
Camp Heart + Hands is special — and yet, without donations, there’s no assurance that this summer’s camp will be held.
That creates one more doubt for families striving to be optimistic.
“My kids are asking — they’re already talking about it,” Watson said. “It’s an incredible experience. It’s a time to be surrounded by people who support you and where other parents understand.”
Bay Area News Group
By: Lisa M. Krieger
Bay Area News Group