Article by Laurie McGinley, Washington Post
It was the most ordinary of family dinners, with pizza and cauliflower. Two exhausted parents sipped red wine. Two children giggled over silly jokes and squabbled over a stuffed animal named Baby Jaguar.
A few moments later, 8-year-old Elijah Simpson-Sundell, his face slightly swollen and his speech slurred, walked unsteadily away from the table. His father gently reproached 6-year-old Genevieve: “When your brother wants something, and he doesn’t feel well, we should try to accommodate him.”
For months this Rockville, Md., family has veered between such quiet prescriptions and desperate searches. They’ve flown repeatedly to Europe, to a clinic that is one of the few places anywhere offering a fragment of hope. Along the way, Brad Simpson and Kristin Sundell have discovered a small community of families grappling with the same unimaginable scenario — a child with a rare, universally fatal brain tumor.
Amid the progress being made on other fronts in oncology, children’s cancers present a particular challenge given the lesser attention and research funding that many get. One of those is DIPG, letters that Elijah’s parents heard for the first time with his diagnosis. Diffuse intrinsic pontine glioma is a doubly devastating tumor: Not only is it intractable, infiltrating the brain stem in a way that makes surgery impossible, but it affects only young children.
Astronaut Neil Armstrong’s 2-year-old daughter died of the disease in 1962, and treatments today are no more successful. Until recently, physicians didn’t even conduct biopsies. Without tissue, the disease couldn’t be studied. All of that is changing, with research accelerating, but treatments remain years away.