Correction: An earlier version of this story incorrectly identified the practice where pediatric oncology nurse practitioner Mary Okimoto works. She works at Coastal Integrative Cancer Care in San Luis Obispo.
About a year ago, Sam Jeffers was a typical 7-year-old — kind, creative, adventurous and incredibly smart. He climbed trees. He clambered on the monkey bars.
Today, Sam is a quiet, calm child who rarely leaves his Grover Beach home. He has difficulty standing, walking and going to the bathroom without assistance. He communicates mostly in whispers and tiny, tremulous nods.
“There is a Sam that isn’t here anymore,” said his mother, Sabrina Jeffers. “We didn’t realize he was slipping away until he was gone.”
Back in September 2012, Sam was diagnosed with inoperable brain cancer — a disease that could end his life in months, or even weeks. Now, the Jeffers family is teaming up with a group of Grover Beach moms to ensure that something positive can come from the tragedy of the eight-year-old boy’s eventual death.
Love and Lemonade for Sam will hold a fundraiser for childhood cancer research from 2 to 6:30 p.m. today at Grover Heights Elementary School in Grover Beach, in connection with Alex’s Lemonade Stand Foundation, a nonprofit organization dedicated to eradicating childhood cancers.
Together, the mothers — Harmony Brown, Michelle Damian, Amanda Hickey, Erlayne Krasner and Mary Moore-Sheller — hope to increase awareness about childhood cancer and campaign for a cure. In just three weeks, they’ve raised more than $2,500.
“You’re seeing a community really stand behind this family. (Supporters) are just coming out of the woodwork,” Brown said. “Through Sam’s personal experience, we’re all becoming a little more aware of how deadly this disease is.”
According to the American Cancer Society, an estimated 11,630 children younger than 15 are expected to be diagnosed with cancer in 2013. Add ages 15 through 19, and that’s approximately 15,000 new cases a year, according to Mary Okimoto, pediatric oncology nurse practitioner at Coastal Integrative Cancer Care in San Luis Obispo.
San Luis Obispo County sees 10 to 15 new childhood cancer cases each year, Okimoto said.
“It’s very hard to get exact numbers,” she added, because most young patients are diagnosed elsewhere due to the relative lack of childhood cancer care on the Central Coast.
“There will never be a pediatric oncologist in our town because there aren’t enough patients to pay them full time,” said Okimoto, which is why she joined Coastal Integrative Cancer Care two years ago. As a pediatric oncology nurse practitioner, she provides chemotherapy infusions, physical exams and other services that patients would otherwise be forced to find out of the area.
Other local resources for young cancer patients include Jack’s Helping Hand, which funds technology, therapeutic equipment and treatment-related travel expenses, and the Hearst Cancer Resource Center at French Hospital Medical Center in San Luis Obispo, which offers advocacy, counseling and referrals.
What is really needed, however, is more research funding, Okimoto said.
As of March, 5.8 percent of all American Cancer Society grants went to childhood cancer research. The National Cancer Institute dedicated less than 4 percent of its total budget to the same purpose in 2011.
“It’s really frustrating being in this field and not having as much research as we deserve,” Okimoto said.
According to Brown, the Jeffers’ experiences with childhood cancer “embodies the larger struggle of all the families that we don’t see.”
She listed half a dozen local children and teens who have dealt with cancer — ranging from Arroyo Grande toddler Lilly Bumpus, who is in remission for Ewing’s sarcoma, to college student Melinda Marchiano of Nipomo, who was diagnosed with Hodgkin’s lymphoma at age 13.
Before her son’s diagnosis, Sabrina Jeffers said, she knew two childhood cancer patients.
“I had never looked at the numbers before. I never had reason to,” she said.
That changed Sept. 20, 2012, when a series of blackouts and seizures sent Sam to the emergency room.
There, an MRI scan revealed a mass on Sam’s thalamus, a structure sitting atop the brainstem. An emergency room physician dispatched Sam and his mother to Children’s Hospital Los Angeles via ambulance.
Upon their arrival, neurosurgeons confirmed two suspicions: Sam had a glioma — a tumor affecting glial cells (“It’s the sticky goo that holds your brain together,” his mother explained) — and they could not remove it surgically.
With radiation considered a last resort, Sam started chemotherapy within days.
For about eight months, he and his family traveled weekly to Santa Barbara for treatment at Cottage Hospital, making trips to Children’s Hospital every six to eight weeks. Then, on May 29, Sam’s oncologist announced that “there was nothing more they could do,” Sabrina Jeffers said.
“I really thought that we had a good five to 10 years (left), that we’d be able to stabilize it, get it under control,” she said, but the tumor kept growing. The oncologist predicted that Sam had just a few months to live.
Sam has already outlived that prediction, his mother said.
“We try our best to make sure he is content and comfortable and he is not in any pain,” she said, adding that memory loss has shielded Sam from knowing what he’s lost.
“He doesn’t ever say ‘Why is this happening to me?’ ” she said. “He just accepts it.”
But Sam’s friends, parents and siblings, 16-year-old Ben and 14-year-old Abby, are not as ready to accept his fate.
“If we have one goal, it would be that no child had to go through what Sam went through and no family has to go through what we went through,” said his father, John Jeffers. “I wouldn’t wish that on anybody.”