“It was complete devastation,” Duncan Avery said about their son's diagnosis, adding that he and his wife were in shock that both of their children had the same cancerous tumor. “I was holding my wife and we were crying. It was one of the hardest things to hear as a parent.”
When Kalea got sick over Memorial Day weekend, her parents assumed it was a stomach bug.
Over the next several days, she continued to throw up, talk about headaches and take long naps — something she rarely did voluntarily — her father said.
So he and his wife took her to the hospital. They followed up with her pediatrician and then took her to a neurologist, who suspected the issue might be related to muscle tension. But a week and a half after her symptoms began, Kalea was crying and lying down in the dark, trying to get her headache to go away.
On June 8, her mother took her to the emergency room again, not far from their home in Torrance, Calif. This time, doctors found a mass in her brain.
“Your heart just sinks when you hear the news that your daughter has a brain tumor,” Avery said. “I’ll remember that moment for the rest of my life.”
Medulloblastomas are cancerous tumors that typically affect between 250 and 500 children in the United States each year, according to St. Jude Children's Research Hospital. According to St. Jude's, survival rates depend on the patient's age and the tumor's progression. When the tumor has not spread, survival rates are 70 percent to 80 percent, but when the tumor has spread to the spinal cord, the survival rate decreases to about 60 percent.
Avery said that he and his wife explained to their daughter that she had a boo-boo in the back of her head and that the doctors needed to take it out.
“She was in good spirits,” Avery said, noting that she asked for sushi and oysters.
Three days later, Kalea underwent surgery to remove the tumor, which was in her cerebellum, the part of the brain that controls balance and coordination.
It wasn't an easy time for Kalea and her family. Although her surgeon completely removed the tumor, the young child developed a postoperative condition called posterior fossa syndrome, which can affect language, emotions and motor function. “For about five days, she wouldn't talk — she would occasionally say 'no,' occasionally say, 'Mama,'” her father said, adding that she also wasn't moving much. “She was lying in bed and crying, and not responding well to us.”
Since then, Kalea has been steadily recovering, her father said, saying more and more words and resuming her favorite activities. But it was while Kalea was on the mend that her parents received the devastating news about their son.
Their 4-year-old boy, Noah, had started acting sad and depressed and also complaining about headaches, pointing to a spot between his eyes — the same spot his sister had mentioned, their father said. Avery said he and his wife assumed the preschooler just missed his big sister, who was still recovering in the hospital.
But when a relative noticed Noah leaning to one side as he walked, Avery got nervous.
Again, they went to the pediatrician.
Again, they went to the neurologist.
The father and son were visiting Kalea at the hospital when Avery said he asked his daughter's oncologist to look at the boy.
He said the doctor suggested that they take their son to the emergency room for tests.
A long and exhausting 13 days after Kalea was diagnosed, doctors discovered the same type of tumor — a medulloblastoma — in Noah's brain, their father said.
A picture posted on social media shows Noah, three days before his surgery, smiling and sitting in a hospital bed holding his sister's hand. Kalea, who was a week and a half post-op, appeared to be resting. Their father said the pair, whom he called “best friends,” would sit in the hospital together, holding hands and watching TV.
Noah underwent surgery June 25 and is believed to have developed the same postoperative syndrome — becoming irritable and speaking a bit less than normal, his father said.
The siblings' surgeon, Ramin Javahery, medical director of pediatric neurosurgery at Miller Children’s & Women's Hospital, said it is “exceedingly rare” to have children in the same family with the tumor at the same time.
“I've never seen it. I don't know anyone else who has seen it,” he said of the double tumors.
Javahery said Kalea and Noah's tumors, which measured 3.5 cm and 5 cm, respectively, are being tested for gene mutations to help determine what may have caused them. The two children as well as their parents may also undergo genetic testing, he said. “We're assuming it’s some unbelievably rare occurrence based on genes that both were carrying,” the doctor said.
The children's father said Kalea is getting better. The parents posted a video on Instagram showing the girl nearly three weeks after her surgery swimming with her grandfather. “Both kids are recovering well and we are getting closer to starting the next steps of treatment,” the post read.
Duncan Avery said that Kalea will need radiation and chemotherapy and that Noah will also need chemotherapy and stem cell replacement therapy; but the 4-year-old boy may avoid radiation for the time because of his young age. A GoFundMe page for the family had raised more than $160,000 for the medical expenses by Friday afternoon.
Avery said he and his wife are taking it one step at a time.
“You can't think about what's going to happen a week from now or a month from now,” he said. “You have to take it day by day and find the little victories along the way.”