Family holds on to hope after 9-year-old diagnosed with aggressive brain tumor

Updated: Oct. 9, 2020 at 10:13 AM HST
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KAHALUU, Hawaii (HawaiiNewsNow) - A Windward Oahu family is hoping that experimental treatment will increase the chances that a 9-year-old girl will survive a rare and aggressive brain tumor.

Near the end of July, Cheyleia Gomes started complaining of headaches.

“She would say ‘Mom, my head is sore,' but she’d go outside and play, and be OK,” said her mother, Rhianna Ramos.

By the beginning of August, part of her face started to go limp, and then she was unable to hold her head up properly.

As the symptoms worsened, a doctor told Ramos to take her daughter to the emergency room. Nothing turned up ― until they did an MRI.

“I saw the doctor that was treating us on the floor come through the door, and I knew something from the way she turned the corner and she said, ‘We found something,’” Ramos recalled.

That something was a tumor, known as a diffuse intrinsic pontine glioma, also known as DIPG. It cannot be surgically removed because it is in the middle of the base of the brain stem.

DIPGs are usually found in children and have a low survival rate.

“She has 14 months,” said Ramos. “My daughter is ... 9 years old. She knows what 14 months means.”

Cheyleia has been undergoing radiation to shrink the tumor.

But her family is also looking at experimental treatments in New York that could cost hundreds of thousands of dollars and aren’t covered by insurance.

“There’s a clinical trial, not just for our Cheyleia but for all these other beautiful children and families out there that is dealing with the same thing that we are,” said Ramos.

The family and their supporters have been holding fundraisers, which has been difficult because of restrictions due to the pandemic.

The family is selling tickets for a drive-through kalua pig sale Saturday. There is also a GoFundMe page where the family wants to raise $100,000.

Cheyleia and her family remain optimistic for her future.

“I wanna work in the Army,” she said. “I just want to help out, help around. Not shoot guns and stuff.”

“When your child asks you, mom are am I going to pass away? Am I going to die? How do you respond to that? What do you tell your child?" Ramos asked.

“My answer to her was, no Chey, you’re not. We’re gonna fight this to the end. It’s in your DNA to fight, and we’re fighting to the end."

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