Finding gratitude: Hayden teen optimistic as she fights rare cancer Ewing sarcoma
STEAMBOAT SPRINGS — At first, Lexus Halone’s family didn’t think much of the small bump on the 18-year-old’s leg.
But then it grew and started to bother her.
On September 20, 2018, the family got a call from Children’s Hospital in Denver. The Halones needed to drop everything and be there the following day.
After blood tests, x-rays and an MRI, they were sent home to wait for results.
“Scary” and “nerve-wracking” would be understatements, Nikki and Travis Halone, Lexus’ parents, said.
Then, on October 10, Nikki got a call. Doctors confirmed a diagnosis of Ewing sarcoma, a rare type of cancer that occurs in the bones or in the soft tissue around them.
“My mind was blank,” Nikki said. “My body was numb, and I couldn’t even speak. I began to cry.”
The doctors told the family to be prepared for upwards of nine months of treatment. Each treatment would consist of five days, with a flush out on the sixth. They described “an aggressive treatment with a long road to recovery.”
“It all happened so fast,” said Nikki. “Everything changed.”
Ewing sarcoma is more common in teenagers and young adults, though Children’s Hospital only sees about 10 cases per year, Nikki said.
It can’t be prevented, according to the Mayo Clinic, and it isn’t inherited or linked to any lifestyle or environmental issues.
Now, about seven months after they went in for the initial tests, Lexus continues to travel to Denver every other week for chemotherapy and, when needed, blood transfusions.
The hope is for Lexus’ treatments to finish at the end of May, but that is still yet to be determined based on screenings, Nikki said. Regardless, testing and monitoring will continue for at least 10 years and, potentially, the rest of Lexus’ life.
According to St. Jude Children’s Research Hospital, “about 70% of children with Ewing sarcoma are cured. Teens aged 15 to 19 have a lower survival rate of about 56%. For children diagnosed after their disease has spread, the survival rate is less than 30%.”
The trips have been hard on the family, both emotionally and financially. Lexus has four younger brothers. Nikki has a car that works for around town but not long distances. Travis needs his truck for work and is currently the sole income provider. Nikki travels to Denver with Lexus and relies on shuttles — for which the cost quickly adds up. They also have been able to travel occasionally with Angel Flight, an organization of volunteer pilots who provide transportation for people with medical needs.
Their insurance coverage is fair, Travis said, but still leaves the family with tens of thousands of dollars in expenses.
“It’s been a pretty scary ride for everyone,” Travis said.
Aside from losing her hair, Lexus looks like any healthy teenager. She has a gentle smile and striking gold eyes. While she is self-conscious about going out without a scarf or a hat, Lexus’ smooth scalp only serves to enhance her natural beauty.
She loves art, dancing, music and yoga. She wants to be a Bureau of Land Management firefighter and help out with the family’s newly acquired ice cream cart.
One of her greatest wishes is for a female golden retriever, who she will name Princess Poppy.
On how her life has changed, Lexus said, “It’s definitely made me more grateful for my surroundings and for every day things.”
She speaks without any anger, self-pity or fear. Her parents describe her as brave and strong and someone who’s always been willing to stand up for what she believes is right — no matter what anyone else thinks.
“She’s bullheaded,” said Travis. “But in a good way.”
Lexus said she never feared dying because she never really felt ill. And she refused to let those thoughts in her brain.
“If you look for things to be happy about — it really works,” she said. “You find things to be grateful for and don’t focus on the bad stuff.”
The Halones have a long list of people and organizations to which they are grateful. There have been friends, family, neighbors, churches, non-profits and others who have reached out and made things a little easier.
Nikki said she wants to bring more awareness to Ewing sarcoma and to the emotional and financial struggles families like hers face when confronted with a cancer diagnosis, especially for a child. To help with their expenses, she started a Go Fund Me account. They’ve raised about $1,500 of their $53,000 goal.