Anthony Stout arrives home in Milpitas after dropping off his parents at the airport. He stretches out on the floor and closes his eyes. It’s 2010, two days after Christmas. Noah, his 4-year-old son, runs around the living room, laughing and playing. Anthony smiles and closes his eyes. He loves his home, his family, his wife—the things that gave him reason to settle down after years on the road. The Latin Grammy-winning hip-hop artist who toured all over the world with Ozomatli now prefers the beat of Noah, his oldest of three children, stomping around the house.
“Everything was fine,” Anthony says. “That was maybe the last time I remember thinking, ‘My life is at peace right now.'”
Noah’s shrieks break the silence. The wails dissolve into tears and his legs give out.
“Dad! Dad!” Noah cries. “I can’t move.”
Anthony knows this joke. “Come on,” he says, scrambling up to help him. “Get up.”
Noah remains still on the floor.
“Come on,” Anthony says. “You can stand up. You’re OK.”
Anthony props Noah back up and lets go. He falls again. Anthony calls his wife, Michelle, to come help. Noah says his head hurts and he can’t stop crying. Michelle tries to rub the crown of his head, but the boy flinches. His screams become even louder.
“I know with a scream like that, something is seriously wrong,” Anthony says. “Something’s not right. We couldn’t touch his head anywhere.”
They put Noah—stiffened by fear and some unknown, paralyzing force—in the car seat and rush to San Jose Regional Medical Center. As the car weaves in and out of lanes, Noah regains some control. He writhes and shrieks in pain.
Hours later in a hushed, white hospital room, now at Stanford, where they were sent to a specialist, the family hears the diagnosis: Noah has a large tumor attached to his brain stem. Diffuse Intrinsic Pontine Glioma—DIPG, which makes up just 0.01 percent of annual cancer cases. Surgery isn’t an option. It’d be like yanking thread from a sweater.
“They told us, ‘Chemotherapy or radiation—we need to do this right now,'” Anthony remembers. “My whole world just flipped.”
The doctor told the Stouts that only 200 or so cases are diagnosed each year, and they are almost invariably fatal. Maybe 5 percent of sufferers survive five years. But Noah likely had just six months to live, doctors said.
Like many families dealt a DIPG diagnosis, the Stouts had a choice to make: conventional or experimental therapy. Against the doctor’s advice, the couple ruled out chemo-radiation.
“I didn’t want to poison my little boy,” Anthony says. “I knew there must be some other route, something they weren’t telling us.”… Continue reading
