“Your child has cancer.” It’s the worst possible news a parent can hear.
Or at least, it is. Until you hear it for the second time, less than two weeks after the diagnosis of your first child.
This nightmare is what Duncan and Nohea Avery are facing after both their son and their daughter were diagnosed with an aggressive form of child brain cancer. And it all happened only 14 days apart.
“We broke down in tears,” Duncan tells the Los Angeles Times. “How could two kids in 14 days have the exact same tumour? How does that happen?”
The first diagnosis
The family’s impossible heartache began when six-year-old Kalea complained about a pain between her eyebrows and horrible headaches in May. Doctors performed an MRI and the worst was confirmed; a 3.5cm tumour was growing near the stem of Kalea’s brain.
“We go from having a healthy baby girl who’s a skateboarder and a soccer player, who’s just loving life, to having a tumour removed from her brain,” says Duncan, a high school coach.
Kalea had surgery right away and doctors confirmed Medulloblastoma, an aggressive tumour that is found in the back of the brain. Medulloblastoma is the most commonly occurring childhood brain tumour, accounting for about one in five of all child brain cancers.
Shattered but determined, the family focused all their efforts on Kalea’s recovery. But only days later, four-year-old Noah started pointing to a spot between his eyebrows and telling his parents that it hurt. It was the same place Kalea had complained of pain. He started walking strangely, his little body tilted slightly to the right.
Lightening can strike twice
Duncan and Nohea, a nurse, thought perhaps that the adoring little brother was mimicking his big sister. But to be on the safe side, Duncan decided to take Noah to the paediatrician.
Dr Lauren Nguyen knew exactly what the Avery family had experienced in the preceding weeks. She was also familiar with the impact Medulloblastoma tumours can have on balance and movement. But surely one family could not be that unlucky? “When I watched Noah walk down the hall, my heart dropped,” Dr Nguyen says. “But, of course, could lightning strike twice?”
It turns out that it can. Tests revealed that Noah also had a tumour and his was larger than his sister’s. While tests are still pending, doctors believe that Noah’s brain tumour is also Medulloblastoma. “My heart literally felt like it was broke apart,” Nohea says.
Child brain cancer genetic link
The double diagnosis even shocked their doctors. “It was just so not within my thought processes that you could have her sibling coming in,” says Dr Ramin Javahery, who operated on both kids. “I assumed it was someone else… Then I was told by the oncologist about what was going on, and I’m like, ‘Oh, my God’.”
Both children have had surgery and, in a ray of good news for the shattered family, it appears their tumours haven’t spread. Doctors suspect there may be a genetic link, but have never seen siblings develop cancer at the exact same time. Kalea and Noah now face radiation and potential chemotherapy to eradicate any possible lingering traces of their childhood brain tumour.
The five year survival rate for children with Medulloblastoma is around 80%, with the potential for full remission if symptoms don’t return after that. While it’s not going to be an easy road, it’s one the family is prepared to face together. “Everyone says their kids are best friends, but our kids are 100% best friends,” Duncan says. “We’ll go to check on them and they’ll say, ‘Go away, Mom, go away, Dad, we’re just playing.’ ”
A gofundme page set up to help the family with their medical expenses, has raised more than US$150,000 of its $200,000 goal in just six days thanks to almost 2,000 donors.
You can follow the Avery’s fight on their dedicated Instagram page, Fight Like The Averys.
For more kids fighting (and beating) cancer, check out Skye Savren-McCormick’s story.