Rob Shein was diagnosed with glioblastoma in May 2022. There is no routine screening for it. There may have been symptoms in hindsight, but by the time doctors found the tumor he was acutely ill and it was the size of a tangerine.
His family credits the care he received at Rhode Island Hospital. The craniotomy appeared to fully remove the mass, and he was home the next day.
Treatment, and a clear scan
That summer he had standard chemotherapy and radiation, and made major lifestyle changes: five miles of exercise a day, a strict keto diet, a concerted effort to get fit. His scans came back clear.
Glioblastoma cells tend to linger, though, and Rob's was the most aggressive sub-type. The tumor progressed that October. By February 2023, his doctors were discussing ending treatment.
A gift of time, 8 more months
Instead, Dr. Eric T. Wong devised a different treatment, based on basic science rather than the standard protocol. It gave Rob about eight more months, with minimal suffering. He died at home, in his sleep, in October 2023.
"The extraordinary attentiveness, patience, and care from Dr. Wong and his team literally bought us those extra months — for Rob to go on his own terms." Rob's family
His family describes him as unlucky in the diagnosis and unusually lucky in how the end went. Those eight months came from treatment that isn't in any protocol — the kind of work this run funds.