RIESEL, Texas (KWTX) Despite a terminal prognosis, a local five-year-old diagnosed with brain cancer earlier this year is fighting to beat the odds.
Layla Evetts. (Photo by Chris Shadrock)
Layla Evetts, 5, of Riesel and Joshua, has “diffuse intrinsic pontine glioma” (DIPG), a very aggressive type of tumor at the base of the brain.
“How do you tell your daughter that she’s dying?” asked Corey Evetts, Layla’s father.
Around the first of the year, Evetts said they noticed Layla was having problems with her right eye.
At first they thought it was a lazy-eye or a nerve issue, but an MRI showed it was something far more serious.
"Even the worst I imagined was not the worst that we got,” said Amanda Perry, Layla’s mother.
On Feb. 22, they got a call from a neuro-oncologist at Cook’s Children’s Hospital in Fort Worth.
“He (the doctor) went on to describe it as an incurable, untreatable, brain tumor,” said Evetts.
After the initial shock followed by a few days spent ‘in a fog,’ both sides of Layla’s family held a meeting and made a plan: they were not going to take the diagnosis lying down, and decided to challenge it.
“It's not what we accepted,” said Evetts. “It’s not how this story’s going to end.”
They needed a miracle, and believe they may have found it at MD Anderson Cancer Center in Houston.
"You want to make the best decision 'cuz you're talking about saving your kid's life,” said Evetts.
Layla is currently in the middle of a six-week clinical trial there…and they believe it’s working.
"Phase one is radiation and you couple that with a chemotherapy called Vorinostat,” said Perry.
Since starting the treatment, they said Layla’s condition has improved because the tumor hasn’t grown, and while she used to complain of “double-vision,” Layla said that only happens now “up-close.”
“The eye is the only symptom that she's experienced (of DIPG),” said Evetts.
Layla has experienced symptoms from the radiation chemotherapy including vomiting and hair-loss, but her parents said they’ve been very minor so far.
Right now she also has a “port” in her chest, a tube which she calls her ‘doggie tail,’ where both medicine is dispensed and blood is drawn.
"They put water in it, and then tummy medicine, and then they put me to sleep,” said Layla.
Her parents have been amazed by her attitude and resilience during this stressful process.
"If a four-year-old, five-year-old now, can be that strong, we definitely can,” said Evetts.
Layla and her twin sister, Rayleigh, turned five on March 6.
"We are not good at cleaning our room up,” Layla laughed.
During Layla’s treatments, they have Rayleigh and her other siblings stay in Houston with her, trying to make it more like home and something to look forward to.
"Both of 'em are very intelligent and have dealt with it very well,” said Evetts.
Part of how Layla has dealt with it, is through prayer, they said.
“I’ve never heard a five-year-old pray like she said,” said Perry. "Just this morning she was reminding me to pray for a woman at the hospital in the same waiting room we were in."
Although Layla prays for others, people around the world are now praying for her.
“She's united a lot of people in a day and age where it seems a lot easier to divide,” said Evetts. “It’s truly reinstated my faith in humanity.”
Nicknamed “tiny might” for being the smaller twin at birth, Layla is making a giant impact.
“People who were complete strangers before this just started coming together,” said Perry.
From Italy to Australia, people across the globe have following her story, sending messages, prayers, and financial help to her and her family.
“It’s been awesome to see who all has our back,” said Evetts. “It’s really opened my eyes to how really good people are out there.”
Both families’ church groups have held prayer meetings for them, business throughout the area have done fundraisers, and community members have put together a special event on May 6 called “A Princess Gala for Layla Palooza,” a dinner, raffle, and auction to raise money for the family where Layla gets to be princess for a day.
"I feel like that if we were to accept that this is going to be a terminal situation and go on like it is, I feel like that you're admitting defeat before you ever go on, and cancer's not something that you can go at like that, and it's not how Layla lives,” said Evetts.
Right now Layla and her family are living life to the fullest, creating as many special memories as they can in case her time gets cut short.
"In my mind her healing comes one way or another, she's either healed on earth or healed in heaven,” said Perry. “So as hard as it is for a parent to accept if that end should come, it's just a short separation for us.”
Thanks to an anonymous donor (who announced they were paying for the trip by sending them a box with Mickey Mouse ears), and the Texas organization A Wish With Wings, Layla and her family will be heading to Florida to go to Disney World later this month (to see all the princesses, but Princess Elsa is her favorite).
Over Spring Break, she got to feed dolphins at Sea World.
It’s not all about the short-term, however; from jokingly about a wedding with her boyfriend at school to what she wants to do when she grows up, Layla’s parents still talk to her about the future.
“I want to be a doctor at the hospital,” said Layla.
While hopes are high and faith is stronger than ever, the odds are stacked against Layla.
With no known cause or cure, according to the Defeat DIPG Foundation, the median life expectancy for children past diagnosis is nine-months, and less than one-percent survive for five years.
“A child diagnosed with DIPG today faces the same prognosis as a child diagnosed 40 years ago,” the foundation’s website states.
Layla’s parents believe part of God’s plan for Layla is to help spread awareness about DIPG and generate more support for this especially deadly type of pediatric cancer.
“I cannot fathom my life without Layla’s presence in it,” said Evetts. “The sass, the energy, it absolutely has been worth having her.”
At the time of her diagnosis back in February, Doctor’s gave Layla 9-12 months to live.
“The only kind of peace you can get is from God, and we’ve felt it every single step of the way,” said Perry.
“We feel like a miracle is in the works.”
If you'd like to donate to Layla Evetts and her family, auction items can be dropped off at Camille Johnson Realtors, 104 Midway Center in Woodway.
Checks can be mailed to the Waco Firefighter Honor Guard. Please make checks out to:
108 James Wesley Dr
Robinson, TX 76706