After radiation-free treatment for their son’s brain cancer, family travels 6100 miles every year to reunite with their care team at Packard Children’s

Recently, the Loh family was in town for their annual visit from Shanghai to check in with son Elliot’s care team. They reflected on the experience of coming across the world to give their son the best treatment possible. We chatted with them during their appointment with neuro-oncologist Cynthia Campen, MD.

Becky and Robin Loh, originally from the Bay Area and currently living in China, enjoy their trips back to Lucile Packard Children’s Hospital Stanford each December, reconnecting with their doctors and nurses — and finding out how well Elliot is doing.

“Meeting the doctors here back in 2010 was the first time we felt hopeful since Elliot was diagnosed, so coming back here isn’t a bad thing for us,” said Becky, of the annual 6100-mile trek. “This is a special hospital and a very different experience than at the children’s ward in a Singapore hospital. The level of compassion from everyone here is so supportive, and it just breeds hope.”

Elliot Loh, now age 7, was diagnosed with a medulloblastoma in December 2009. His family was then living in Singapore, where doctors recommended high-radiation treatment for Elliot, which made his parents even more uneasy for fear of long-term effects. “Regardless, if radiation therapy was our only option, we would have done it, but I had to look for an alternative solution,” said Robin Loh, Elliot’s father.

Medulloblastoma is a brain tumor usually found on the cerebellum (back and bottom area of the brain). About 1 in 5 of childhood brain tumors are this type. Curing this type of cancer with chemotherapy and radiation treatments has been standard practice, as with many cancer treatments. However, places like Stanford Medicine Children’s Health are conducting clinical trials to find treatments that lessen the consequences of traditional protocols. For instance, high doses of radiation therapy can impact neurocognitive development, which influences education, employment and quality of life.

So, Robin took to Google. He was looking for the best pediatric cancer centers and clinical trials available. In his search he discovered a multi-site trial that had originated at St. Jude Children’s Research Hospital in Memphis, Tenn., and was also being conducted by a Packard Children’s team led by Paul Fisher, MD, chief of the division of childhood neurology.

They told their doctor in Singapore about the trial. In an amazing “it’s a small world” moment, that doctor knew Packard Children’s hematologist Michael Jeng, MD. Jeng then connected the family with Fisher, and by February 2010, the Lohs were in Palo Alto and ready to get started with twelve months of treatment with chemotherapy, but no radiation. This occurred after Elliot underwent surgery in Singapore in January to remove the tumor itself.

“The goal of this particular trial was to reduce or eliminate radiation doses in infants with brain tumors, and determine a safe level that was curative but did not cause neurological deficits,” said Fisher, the Beirne Family Professor of Pediatric Neuro-Oncology at the Stanford University School of Medicine. “It was precisely what the Lohs were looking for, and in Elliot’s case, he had zero radiation therapy”

Elliot, then not yet age 2, took well to treatment. “He sailed through chemo for the most part,” said Campen, assistant professor of child neurology at the School of Medicine.

“His age was a blessing,” said mom. “He doesn’t remember the surgery and treatment the way his dad and I do.”

Nearly 20 years ago, Fisher started the pediatric brain tumor program at Packard Children’s. It’s a highly specialized, inter-disciplinary team, including neuro-oncology, neurology and neurosurgery. The program is now the largest comprehensive center for childhood brain tumor research and care in the western U.S., and one of 10 members of the National Cancer Institute’s Pediatric Brain Tumor Consortium.

The Lohs with Dr. Fisher during one of his visits to Shanghai

“As a physician, it’s very empowering to have the opportunity to treat this type of cancer and see the patient thrive, as Elliot is doing, free of the late effects of treatment,” said Campen. “We now consider him cured of his brain tumor and he will likely have a long and productive life.”

Becky affirms that she and Robin are dazzled by how well he is doing in school: a second grader who loves math, PE, and computer and video games. Elliot’s also now a big brother to 6-month-old boy, Evan.

And the future? The family plans to return the Bay Area soon and Elliot says he wants to attend Stanford for college — and it’s never too early to start planning!

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