Less than a month ago, Duncan and Nohea Avery’s two children were diagnosed with the exact same kind of tumor in the exact same spot in their brains, an anomaly that Avery was told may steep his kids in medical journal history. Now, with a few weeks to look back over the swirling chaos, Duncan can speak calmly.
“It’s amazing how, in three weeks, your whole life can be turned around and change how your entire routine is,” Avery, a surfing coach at Redondo Union High School, said. “With the support of our community, our friends, and our family we’re handling it as best as we can.”
That support has come in many forms, including GoFundMe internet crowdfunding that has raised over $60,000 toward post-surgery recovery for 6-year-old Kalea and 4-year-old Noah.
It started over Memorial Day weekend when Kalea began feeling ill. Her parents thought it might the flu, but as the week progressed, her symptoms worsened. Headaches came regularly, she began throwing up every morning, and she began taking naps after getting home from school.
“She never naps,” Avery said.
Trips to the pediatrician turned into trips to the emergency room, where an MRI scan showed a mass in her brain. On June 11, 14 days from her first symptoms, doctors operated. They removed a 3.5-centimeter medulloblastoma tumor from her brain’s fourth ventricle, a spinal fluid channel near the back of the brain.
While Kalea was recovering, Avery and his wife noticed that Noah was acting unusually. He and his sisters are best friends, they thought, so it stood to reason he was depressed, possibly feeling a sympathetic, psychosomatic sickness.
“But the one troubling thing was, we noticed his gait, the way he was walking,” Avery said. “He was leaning slightly to the right.”
While visiting Kalea at Long Beach Miller Children’s Hospital, Avery brought Noah to the neurologist who cared for his daughter. Within moments, Avery recognized the concern on the doctor’s face, which an MRI confirmed. Noah also had a tumor in the exact same location.
The surgery, which happened on Monday, removed a five-centimeter mass from his brain.
It’s the first known time in medical history, Avery was told, that siblings were diagnosed with medulloblastoma within weeks of each other.
His kids have a long road ahead. Kalea is likely to face six months of radiation treatment and 11 months of chemotherapy. Doctors will try to avoid radiation for Noah, given his age, but he’ll have to undergo chemo as well. Kaleia, doctors determined, has an 82 chance of survival after five years. Avery estimates that Noah will face similar odds.
The cause of the tumors is unknown.
“The first thing we asked was if it was environmental … but all of the doctors have said it’s definitely genetic,” Avery said, but with a possibility, the environment triggered the tumors’ growth. “The only positive thing is, if they do genetic testing, maybe the reason we’re on this earth is to study our kids and our genes to figure out exactly what causes this.”
For now, the Averys are easing back into life and crediting their doctors, including pediatrician Dr. Lauren Nguyen, and the Redondo community for the support they’re surrounded by.
“We feel like we’ve been given a lot, but the community has given us so much more in return,” Avery said. “We’re truly humbled by the support and love that we’ve received.”
To follow the Avery children’s recovery, visit instagram.com/fight.like.the.averys.
