It was the last thing any parent would expect to hear – or should ever have to.
But for Brittany Stevens and her fiancé Matt, the news they received about their 4-year-old daughter Amelia marks one of the darkest moments of their lives.
“They did an MRI and when they came in to talk to us, you could tell it was horrible news,” said Stevens, of Luling. “The room was very still and the neurosurgeon wasn’t looking at us.”
Stevens said Matt finally cut the tension in the room.
“He asked if it was terminal. (The neurosurgeon) told us, ‘Well, it’s inoperable, and there is no treatment,’” Stevens said.
And just like that, lives were changed forever. The diagnosis was brain cancer. Officially and specifically, Amelia has DIPG (diffuse intrinsic pontine glioma), a very rare and extremely aggressive cancer located in the brain stem, which makes it inoperable and untreatable.
These tumors invade diffusely throughout the brain stem, growing between normal nerve cells. Aggressive surgery would cause severe damage to neural structures vital for arm and leg movement, eye movement, swallowing, breathing, and even consciousness.
Stevens said the prognosis for Amelia was from nine to 18 months.
“Our hearts sank,” Stevens said. “I broke … we broke.”
Before this, Amelia had never been sick in her young life, Stevens said.
The first signs of trouble came when Amelia’s balance seemed to be off.
“She was walking and kind of shoulder-checking doorways,” Stevens said. “I thought, whatever, she’s clumsy, I’m clumsy. But she was drooling … we were under the impression it was an inner ear issue.”
Stevens set up an appointment with Amelia’s pediatrician, and let staff at her school know what was going on.
“The school called me and said her balance is way off. Her motor skills are slipping, her speech is slipping,” Stevens said. “So I picked her up from school and brought her to the ER.”
A CT scan revealed a mass in Amelia’s brain, which prompted her parents to take her to Children’s Hospital. That’s where the MRI revealed cancer.
“It’s the last thing any of us would have thought,” Stevens said. “I thought it was vertigo, and you’re telling me my daughter is likely to die before she’s 5. It’s so very hard.”
The family has not given up hope. There is a treatment currently in phase 3 of clinical trials Stevens is hoping Amelia can be a part of. According to findings reported last year by an international team of researchers led by the University of Michigan Health Rogel Cancer Center and the Chad Carr Pediatric Brain Tumor Center, a drug – ONC201 – nearly doubled survival for patients with diffuse midline glioma or diffuse intrinsic pontine glioma, compared to previous patients.
The drug does not shrink or eliminate the tumor, Stevens said, but it’s utility is to prevent the tumor from growing again following successful radiation treatment.
Currently, Amelia is about midway through her six weeks of radiation treatment. Stevens said her daughter recently became able to walk on her own again.
“It’s very shaky, but it’s the first time since (June 20) she’s been able to,” said Stevens.
Stevens is currently in dialogue with several hospitals around the country, looking for the family’s best options to move forward.
Locally, several in the community have stepped up to help the family raise funds for this journey. On Oct. 18, the Riverlands Country Club in LaPlace will host a golf tournament benefiting Amelia. The tournament is sponsored by Hogs for the Cause and the HelpDat Foundation and hole and team sponsorships are being sold. There is also a 50-50 raffle with a drawing to be held Aug. 19 (tickets can be purchased virtually through Venmo via lyndastevens3). Bracelets in support are being sold for $5 each and can be purchased via Venmo (@Jenn2425). There is a GoFundMe set up to assist the family as well as a second raffle.
Stevens said the family is very thankful for all the support.
But while her daughter’s well-being is foremost on her mind, Stevens also has been vocal about a statistic that doesn’t sit well with her at all.
The federal government’s National Cancer Institute (NCI) allocates 4 percent of its annual cancer research budget to pediatric cancer, which is about $250 million for all pediatric cancers combined – less than $3 per child.
It’s a number Stevens knows well – she works for Wigs By Tiffani, a company that makes wigs and often works with cancer patients. She believes that number is far too low.
“It’s unacceptable,” Stevens said. “Every person I’ve mentioned this to is absolutely blown away. We’re supposed to protect our children – they’re the future.”
