Torrance siblings with rare brain tumors on road to recovery

A year after receiving the devastating news — just two weeks apart — that both their young children had rare cancerous brain tumors, Torrance parents Duncan and Nohea Avery say the kids are recovering well. There are even signs they will both soon be in full remission.

Both children, Kalea, 7, and her brother Noah, 5, responded to treatment extremely well, their parents said. Kalea returned to first grade in April, and the two siblings could be found riding bikes and playing in their front yard with big smiles on a recent visit.

Noah’s cancer is in remission and Kalea will be finishing her ninth and final round of chemotherapy in July. For Kalea, the worst part was the radiation, said her mom. She underwent six weeks of radiation, five days per week.

“She lost a lot of weight, felt horrible,” said Noah Avery, 37. “It took several months after the radiation for her to start feeling better.”

Noah, meanwhile, is in a trial study that aims to avoid radiation treatment in young children because of known cognitive effects it can have.

“His treatment was extremely high-dose chemo, followed by stem cell transplants, followed up with more intense chemotherapy,” said Nohea, who left her job as a nurse and virtually lived at the hospital for six months up until January.

Both parents said they could not have made it without more than $212,000 that came in donations from 2,642 people through a GoFundMe page. Some of the contributors came from around the world after the story last year gained international media attention because it was so rare that two siblings would have the same brain tumor called medulloblastoma. Doctors said they had similar chances of being struck by lightning twice. So far, doctors still doesn’t know the cause.

“It’s so humbling,” said Duncan Avery, 37, a teacher. “We were both raised here. For all the people who we’ve interacted with, plus complete random strangers, to reach out and help us from all over the world, it’s just so humbling.”

Nohea said along with the financial help came the much-needed emotional support from knowing so many people were pulling for them and thinking about their family.

“I can’t believe how lucky we have been,” Nohea said, “to have this support, not only to have our family around us and live nearby us, but to have that kind of support from the community behind us.”

Following the diagnosis, the children underwent testing for genetic mutations, all of which came back negative.

There are no environmental factors tied to the cancer, but much of what experts know about brain tumors is still a work in progress. Doctors also checked for viruses and whether there was a potential cluster of cancer occurrences in their neighborhood, and both of those came back negative.

“As of a couple months ago, they still hadn’t found anything,” Nohea said.

To treat the cancer, surgeons started by removing the tumors successfully — the first victory. Doctors then tested to see if any cancerous fluids were present or whether the cancer had spread to their spines, which it hadn’t.

“It was completely localized,” Nohea said.

How the two parents went about explaining the condition to their kids was another big challenge, they said.

“They know the terms,” said Nohea. “They know they had radiation and they are getting chemo, which is medicine, and they know it’s so that this ‘boo-boo’ doesn’t come back.”

They recently heard the word tumor and wanted to know what that was.

“I’m like, ‘that’s the boo-boo you had and it grew really big and they had to remove it,” Nohea said. “But they don’t know cancer has a prognosis or a survival rate. That stuff is not even in their vocabulary, and it doesn’t need to be. They don’t need to know the severity of it.”

Now that the immediate threat of cancer and dealing with hospital stays are over, Duncan Avery said the are thinking about the future.

“It’s been such a crazy journey for our family,” he said. “Our life has been hospital visits and treatments and just going through the whole process of what it takes to have two kids battle cancer… So now, instead of just that everyday grind of getting through the day, it’s more about how we are going to help our kids succeed the best in life given the treatments they’ve been through.”