Profile: Just Breathe
Battered by cystic fibrosis, Las Vegan Alexa Ciancimino battles for air with a little help from family and (sometimes famous) friends
Snowflakes blanket car hoods like powdered sugar on this frosty evening in the gated Red Rock community where the Ciancimino clan resides. Papa Ken grills boneless, free-range chicken breasts as mama Michelle tosses an organic green salad and simmers the quinoa. Siblings Kevin and Leah fiddle with their iPhones as the fireplace flickers. At 7:30, 24-year-old Alexa arrives, dispensing toasty bear hugs. She’s the one everybody’s been waiting for, the life of the party whose life has been anything but a party. You’d never guess from her smile and radiant personality that Alexa has been fighting for air since she was diagnosed with cystic fibrosis, a pulmonary disease, shortly after her second birthday.
“She had a serious symptom when she was 2,” Ken recalls. “A rectal prolapse — that was the red flag. Part of CF is bad digestion, acute constipation. One morning, she was straining to poop and pushed a section of her intestines out her butt.” Dad’s graphic depiction doesn’t faze anyone. This family is completely unfiltered. They express themselves openly, honestly. “This was a glaring symptom of pancreatic insufficiency,” Michelle adds. “The body’s not getting its enzymes from the pancreas into the intestines to break down food. They did a sweat test on her, and she was diagnosed with CF. They measured the amount of salt on her skin, and they knew. Devastating news because at that time, life expectancy for CF was mid 20s. It’s up to 36 now. The research and treatment continue to improve.” Since that day, the healthcare siege has been constant, relentless, expensive — but also, at times, fun.
“The medical maintenance began immediately with two lunch treatments per day,” Ken says. “We had these small rubber cups, used to call ’em bongos. Alexa would do her nebulizers (inhaling devices), and we’d do the bongos. We’d lay her on the floor, beat on her chest, beat on her back, put her up on our legs and ankles, beat on her sides, you know, play bongos, for 20 minutes. It was like playtime. She didn’t know how sick she was, watching Sesame Street in her footsie pajamas.”
Ken earned his undergrad degree at Rutgers. Michelle went to Seton Hall Law School, where Ken then received his MBA. They married in 1990, and Alexa was born in New Jersey in April 1994. At age 7, Alexa showed physical signs it was time to relocate. “She had a propensity for mold, which caused mucus to build up in her lungs,” Ken says. “One of my oldest friends is rock guitarist Ricky Medlocke, from Blackfoot and Lynyrd Skynyrd. He has bronchiectasis, a nongenetic form of CF that overproduces mucus. He lost a lung … (he) advised us to either get to the beach or to the desert. I couldn’t afford the Jersey Shore back then. So being that I was working with musicians and entertainers, Las Vegas was the call. New Year’s Eve 2001, three months after 9/11, I moved my music management/consulting business (here).”
Things were okay for Alexa for a few years, until her freshman year of high school. “I started suffering from this chronic cough. The following year, in 10th grade, my doctor put me on IV antibiotics for the first time. I’d stay on ’em for three weeks, get off, and a couple days later, start coughing again. I’d also developed these horrible allergies. My numbers were off-the-chart bad. I was completely out of whack. High school was really tough, I was sick all the time. Missed a lot of classes. ... CF is weird, it changes, morphs into different ailments. I don’t have that chronic coughing and allergy issue anymore, but I’ve got other stuff.”
Alexa’s life ebbs and flows like any other twentysomething’s, only with a couple of daily priorities that require absolute vigilance. “My everyday treatment is pretty intense,” she says. Like a treatment vest made especially for CF patients. Imagine doing this daily: “I put the vest part on for 30 minutes. It squeezes and shakes you, moving the mucus out of the bronchial tubes so you can cough it up. Every five minutes, it’ll turn off and you have to change the settings. Vibration gets harder and faster. This and the nebulizer I do twice a day, every day. … I inhale four different medicines every morning. … In the middle of the day before I work out, I do just the nebulizer to open my airwaves. I like Pilates and indoor cycling for cardio but have to take two Advil before because my lungs hurt.”
Thanks to Dad’s business, Alexa has several famous “uncles,” such Deep Purple’s Glenn Hughes, Twisted Sister’s Dee Snider (a Vegas resident), and Rock ’n’ Roll Hall of Famer Steven Tyler. And despite her health challenges, she’s landed a couple of interesting gigs. In 2017, as personal assistant for Aerosmith manager Larry Rudolph, she was tasked to do research for Steven Tyler, who was studying to become an ordained minister. “Larry wanted Steven to marry him and his fianceé, Jennifer,” she recalls. “So I went online and studied about marriage certificates and ordination. I also booked travel, ran errands, took the dogs to the groomers, stuff like that. It was a cool job.” When Alexa was 12, another loving “uncle,” Barry Manilow, hosted two CF benefits on her behalf. He even brought her onstage to duet on “I Can’t Smile Without You.” “My dad has sent that YouTube clip to a thousand people,” she laughs.
As the family goes about its business — Michelle and Alexa manage an essential oil business, Leah is a hostess at Honey Salt, Kevin graduates from UNLV in May, and Ken is helping secure many of those high-profile Strip residencies — Alexa is taking life one breath at a time.
“I have 40 percent lung function right now,” she says. “It’s hard to have a social life with this disease. I wasn’t really mindful when I was younger, mostly frustrated, angry, and depressed at being sick all the time. I never went out. When I got older, part of maturing was that I truly began to understand CF and all its components. There’s nothing like feeling better. Good enough to, like, go out to a movie. I am interested in seeing the first ever CF-themed motion picture, Five Feet Apart, which is opening this month. I really liked The Fault in Our Stars and Me, Earl and the Dying Girl. Hollywood is good at raising awareness on important life-and-death issues. Right?”
A Hollywood happy ending, like finding a cure, would be sweet, too.