Only about 1,200 to 1,500 children up to 4 years old are diagnosed with brain tumors every year, said Dr. Susan Chi, the deputy director of pediatric neuro-oncology at Dana-Farber Cancer Institute and Boston Children’s Hospital.
“Brain tumors in children are very rare. And certainly less frequent than what we see in the adult population,” Chi said.
There are dozens of types of brain tumors and treatments vary, and the survival rate for infants is lower the younger the child, she said.
That’s because babies’ brains are undeveloped, so radiation for a child younger than 5 is generally not an option.
“Radiating such a young brain really affects their potential cognition,” Chi said. “That limits how much radiation, if any, can be given to these kids, and that affects their survival.”
Cannon, 41, announced the death of his son Zen on Tuesday.
“Over the weekend I lost my youngest son to a condition called hydrocephalus that is pretty much a malignant, midline brain tumor — brain cancer,” Cannon said. Hydrocephalus is characterized by an abnormal increase in the amount of fluid on the brain.
Zen underwent surgery to drain the fluid. His condition worsened around Thanksgiving, said Cannon, who didn’t specify what type of brain tumor his son had.
Danielle Leach, a spokeswoman for the nonprofit National Brain Tumor Society, based in Newton, Massachusetts, lost her 5-year-old son, Mason, to a brain tumor in 2006. He lived with the tumor for 15 months, Leach said.
“Any time we, as a community, hear about another parent going through the tragedy of losing a child to a brain tumor, it always recommits all of us in the community to do more to continue to raise awareness,” Leach said.
Because of the location of tumors and the aggressive treatment required, brain tumors can have lasting and life-altering physical and cognitive effects, she said.
It’s critical that parents secure “good information, resources and a strong relationship” with their care teams no matter what stage in the fight their children are in, Leach said.
Chi said treatment for children living with malignant tumors can produce results. She recommends that parents with children who have brain tumors find specialized doctors, which will increase their children’s chances for positive outcomes.
Although they are rare for infants, brain tumors are the leading cause of cancer-related deaths among children and young adults between infancy and 19 years old, according to the National Brain Tumor Society.
An estimated 4,630 children will be diagnosed with a brain tumor this year. More than 13,600 children are living with malignant brain tumors in the U.S., according to the organization.
The National Brain Tumor Society also said standard of care for children with brain tumors isn’t well-defined.
“More investment is critically needed in the fundamental understanding of why pediatric brain tumors happen and how we can create cures and quality of life for those treated,” Leach said. “At the end of the day, we are fundamentally hoping that a doctor can walk in a room and say, ‘There is something I can do.’”