October 30, 2013 | 3473 views
Dreaming of the Cosmos
Middle-schooler with inoperable brain tumor meets his soccer heroes
Zachary Bernstein, an 11-year-old from Lynbrook, is like many children his age: He loves soccer and karate, and is a good artist and student. But in late May, Zachary’s life changed forever when he was diagnosed with an inoperable brain tumor.
“Life stood still,” said his father, David Bernstein. “We were paralyzed the moment we heard. We didn’t think this could happen to us.”
Over the Memorial Day weekend, Zachary, a sixth-grader at South Middle School, began complaining of double vision and a weakening in his left arm and leg. After seeing a pediatrician and an optometrist, he was taken to Cohen’s Children’s Medical Center, where, after an MRI, a tumor was found on his brain stem. “As parents,” David said, “this is your worst nightmare.”
Over the next few days, support poured in from family members and friends. Zachary’s brain scans were sent out to doctors across the country. After the initial diagnosis, David said, doctors wanted to immediately perform a biopsy — a closer examination of a tissue sample — but he and his wife, Deena, declined, seeking more opinions.
The Bernsteins chose New York University Langone Medical Center for Zachary’s day-to-day care. “We felt this was the best team that addressed our needs, and was completely committed to the success of Zachary’s health,” David said. Zachary underwent about 30 rounds of radiation from June through August.
His parents researched the most aggressive and progressive treatments. “We decided that one doctor, one hospital, one procedure was not going to work,” David said.
Zachary now has a team of five doctors, including specialists from NYULMC, Memorial Sloan-Kettering Cancer Center and Duke University. “We have hand-picked a medical team that we feel is competent,” David said, “with complete transparency and the resources to make the very best decisions about his treatment.”
After consulting with their doctors, the Bernsteins decided to have a biopsy done in September. It was risky, because it was near the brain stem, but it was successful. The tissue was sent to Foundation One in Boston, which did a complete genomic mapping of it, and a medication was identified that doctors hoped would target his tumor.