Cristian Rivera's bedroom is filled with trains. Like many boys, he played sports and loved things that moved. It's a place that his father, John, has frozen in time. The family has kept everything the same for six years. Doctors diagnosed Cristian with DIPG at age four. He was six when he died.
"It was a very bad feeling to be helpless and to watch something you love so much, the person you love so much suffer and diminish, right before your eyes," John told Ivanhoe.
For decades, doctors have had a difficult time treating DIPG. The tumor grows near a delicate part of the brain stem that controls breathing and heart rate.
Doctors also say the brain has a self-protective feature called the blood-brain barrier, a natural roadblock that keeps medications from going to the brain and the brain tumor.
Pediatric neurosurgeon Jeffrey Greenfield, MD, at Weill Cornell Medicine in New York explained, "So you give all these toxic chemotherapies and get all the terrible side effects, but you don't get any of the penetration into the brain."
Mark Souweidane, MD, Director of Pediatric Neurosurgery at Weill Cornell Medicine in New York is researching a new procedure that would bypass that barrier.
"What we have been investigating is taking small cannula, or small tiny-like, hair-like structures, much smaller than a drinking straw that basically go into the brain tumor itself, and through that we infuse the therapeutic molecule," Dr. Souweidane said.
Dr. Souweidane is leading a small clinical trial of the procedure. If the delivery system is proven safe, more patients could be treated in a second phase.
He said, "I don't think it's being short-sighted, but I entirely expect to see a cure in my lifetime."
John told Ivanhoe, "I ultimately want to see a cure. I don't want to see kids suffer."
John Rivera established the Cristian Rivera foundation to provide support for other families with children who have been diagnosed with DIPG. The foundation has also raised more than $500,000 since Cristian's death for DIPG research.