Wish Book: Nonprofit helps families endure the impossible when their child has cancer
As Teena Punjwani and Deepak Nasta take stock of the last year, they sigh.
“I feel like I’ve lived too many lifetimes in this one lifetime,” Punjwani said.
The San Jose couple’s life together was thrown into chaos in February with a heartbreaking diagnosis: their 5-year-old son, Jayaan, had brain cancer. His parents had sensed that something was off last winter, when Jayaan’s writing skills nosedived at preschool and he mysteriously lost balance on the left side of his body.
What followed were months and months of anxious days and long nights at clinics and hospitals as Jayaan, tough as nails, soldiered through his treatment plan: brain surgery and chemotherapy, plus a whirlwind of appointments for occupational therapy, physical therapy, blood tests and MRIs.
Through the ups and downs, though, the couple weren’t alone. Staff from Jacob’s Heart, a nonprofit based in Watsonville serving families in Silicon Valley and the Central Coast who have a child with cancer, stepped in to help them weather the ordeal.
After a hospital social worker pointed them to the nonprofit, the family said, Jacob’s Heart provided a slew of resources with all the care and attention of a family member. The nonprofit has paid for their energy bills at home, plus their groceries and gas. Nasta is the family’s sole breadwinner at the moment as Punjwani practically lives at Lucile Packard Children’s Hospital at Stanford with Jayaan.
When the hospital discharged Jayaan earlier this year, Jacob’s Heart staff visited and played with him, bringing some of his favorite toys, like Mickey Mouse and Bluey.
The nonprofit also dispatched van drivers to whisk them from their home to medical appointments, as early as 6 a.m. or as late as 10 p.m. – and in emergencies, such as a day this fall when Jayaan became unresponsive and landed in the pediatric intensive care unit for a month
“They’re such an amazing team,” Nasta said. “We honestly could not do it without them.”
The nonprofit’s services are exhaustive: transportation to medical appointments, therapy and emotional support, parent support groups and grocery deliveries for families with immunocompromised children. The organization helps pay for funeral and memorial expenses. Specialized staffers known as family support specialists are liaisons with the families and connect them with whatever they might need.
All free of charge, no questions asked.
Most of Jacob’s Heart clients live around Monterey Bay, plus clusters in the Salinas Valley and the southern tip of the Bay Area. Many are Latino and lower-income. On a giant map in the nonprofit’s Watsonville resource center, hundreds of pins mark the homes of families who have, at some point, accepted help in the 27 years since Jacob’s Heart launched.
Jayaan’s family is one of two dozen in Santa Clara County whom the nonprofit is now serving after expanding into the county this summer. Jacob’s Heart is seeking $40,000 to further its expansion into Silicon Valley and continue its core services in Santa Cruz County. With that funding, the nonprofit said, staff could support at least 50 families in Santa Cruz and Santa Clara counties.
The nonprofit is named for Jacob Judd. As a child in the 1990s, Judd was diagnosed with cancer and given a 5% survival rate. He beat the odds. Now, he’s in his 30s.
Other children were less fortunate. Hanging on the wall next to Judd’s portrait in the nonprofit’s Watsonville resource center are photos of two kids who did not survive: Maddy, who inspired the nonprofit’s arts programs, and Augustin, whom Jacob’s Heart helped send to Mexico to be with his family. On a foggy day in late October, staff had erected a Dia de los Muertos altar where dozens of families offered ofrendas to their loved ones.
Eli Garnica, manager of development and communications at Jacob’s Heart, said people often offer sympathy when she tells them what she does, and the work can be emotionally taxing. But it’s fulfilling, she said – even “joyous” to watch families build community and work together.
“We get to play a role in their journey and their life,” Garnica said.
The nonprofit’s home base in Watsonville is as far from a gloomy clinic or social services office as you can imagine.
The vibrant space is replete with children’s toys, house plants, therapists offices, a community kitchen, a food pantry and a free clothing store. Staff host volunteer events and “art from the heart workshops,” where kids learn to express themselves artistically. And in the summer, Stanford hospital nurses volunteer at the nonprofit’s three-day summer camp.
Even after months of treatment that would strain the toughest adult, Jayaan is still “a really happy kid,” Nasta said. On Halloween, he and Punjwani sat in a courtyard at the Stanford children’s hospital. They had recently heard good news: after weeks in the pediatric intensive care unit, Jayaan was heading back to the oncology wing. Hopefully, after finishing another course of chemo and then rehabilitation, Jayaan could get back to the things he loves most.
That day was a good one, Punjwani said, “because Jayaan is having a good day.”
ABOUT WISH BOOK
Wish Book is a 501(c)(3) nonprofit organization operated by The Mercury News. Since 1983, Wish Book has been producing series of stories during the holiday season that highlight the wishes of those in need and invite readers to help fulfill them.
WISH
Donations to Jacob’s Heart Children Cancer Support Services will help the nonprofit provide clients with transportation to treatment and medical appointments, nutritious food, and crisis support, in addition to helping with expenses related to the safety and care of the child with cancer. Goal: $40,000.
HOW TO GIVE
Donate at wishbook.mercurynews.com/donate or mail in this form.
ONLINE EXTRA
Read other Wish Book stories, view photos and video at wishbook.mercurynews.com.