It takes just seconds for this tiny 4-year-old to capture your heart.
Perhaps it's because she spouts comments you'd never expect to hear from little kid.
But then, Audrey Hughes is no ordinary 4-year-old girl. Audrey wrapped up a year—well, 54 weeks actually—of chemotherapy treatments earlier this summer, after her diagnosis at age 3 with stage 4 rhabdomyosarcoma. It's a long word for a disease in which malignant cancer cells form in muscle tissues.
It wasn't the first bout with a difficult health issue for the Gilbert girl. She was born with a tethered spinal cord and spina bifida, which resulted in surgery when she was 10 weeks old. She had a second surgery last summer to remove a tumor from her spinal cord. Because that tumor was determined to be cancerous, she began radiation and chemotherapy treatments.
Unbelievable news was delivered to Audrey and her family in early July after an imaging scan showed no more visible signs of cancer.
Audrey's mom, Melissa, points out that a cancer-free declaration can't come for five years once treatment stops. That means Audrey will continue to undergo scans several times a year until she's 9.
Frequent visits to medical providers don't seem to bother Audrey.
Born Nov. 14, 2011, at Banner Desert Medical Center in Mesa, she immediately went to Cardon Children's Medical Center, Melissa said. Surgery soon followed.
The Hugheses went home after surgery "and all was good," Audrey's dad, Ira, said. They had a normal infant daughter. But, then he and Melissa observed Audrey's development regressing and a trip to the doctor resulted in the discovery of the tumor.
On June 16, 2015, Audrey had surgery to remove that tumor, and prepared to begin the year of treatments which she just completed.
"It was a scary time," Ira said.
Rare disease, diagnosis
It's believed that Audrey is just the fifth documented case in the world of rhabdomyosarcoma on a spinal cord, Ira said.
"It's not hugely common," he said, and when it is present it's "usually a soft tissue cancer in the arms or legs."
Dr. Erlyn Smith, a pediatric hematology and oncology physician at Cardon, said the incidence of this cancer in children in the 0 to 4 age group is 4 in 1 million. Just 3.5 percent of all cancer cases in kids age 0 to 14 are rhabdomyosarcoma, Smith said.
"The diagnosis was rare and the location was rare," Smith said.
Melissa describes the days after the diagnosis and surgery as feeling like she'd been hit by a car.
"Then you go into survival mode, and figure out how to take care of everything," including her son, Cole, now 8.
"It was overwhelming," Melissa said. She credits her daughter for everyone's success in the ordeal.
"It was Audrey's "spirit and attitude that got us this far."
Essentially, Audrey has been in and out of the hospital on a regular basis since the tumor was removed, Melissa said.
She and Ira developed a routine in which one of them would stay 24 hours at the hospital while the other was home with Cole and then they'd trade off. Melissa's parents live in Chandler and Cole spent plenty of time with his grandparents, too.
Melissa became a stay-at-home mom after Audrey was born. Ira works from home and said his employer made many accommodations that let him follow a flexible work schedule.
For two months, all four family members lived in Houston while Audrey underwent proton radiation at MD Anderson Cancer Center. It's different from the more traditional photon radiation in that the positively charged parts of the atom (protons) release their energy only after traveling a certain distance and cause little damage to the tissues they pass through. They kill cells at the end of their path, but not along the way.
They chose MD Anderson, Ira said, because "only two hospitals in the U.S. are doing proton" radiation. The other is in San Diego.
Audrey's entire brain and spine had to be treated, he said. Proton treatment also came with better odds of his daughter not losing her sight or hearing or developing additional spinal issues.
"Her entire brain had to be radiated in case there was a cell in the wrong place," he said.
Finding humor in odd places
The Hughes family spent lots of time at Cardon Children's Medical Center in Mesa during Audrey's illness. Audrey found she and several nurses share a similar, goofy sense of humor. So, they'd play tricks on each other all of the time.
Audrey loves bugs and rodents, especially realistic-looking plastic and rubber bugs. She found ways to strategically place plastic bugs around the hospital in attempts to spook the staff. They'd get right back at her, and it helped her "get happy," her mom said.
She taped fake roaches to blood orders, pulled a rubber rat around with a piece of fishing line and hid bugs in bathrooms.
"The nurses have definitely become family," Melissa said.
Smith agreed.
"Audrey was a frequent flyer in the hospital, so she got 'in' with the hospital staff," she said.
Audrey has "a lot of energy," Smith said. "She barely stayed in her room. She rode her tricycle everywhere on the seventh floor, going super fast with her dad chasing her down the hall."
She also displays her oddball sense of humor.
"Do you know why it rains?," Audrey asks. "The angels are peeing in the clouds."
Audrey went so far as to help coax other kids out of their shells, Smith said. "Audrey—she can just deal with everyone and everything and not make a big deal out of it," Smith said, "and her parents make it work."
Speaking honestly, Ira said for most of the last year his family "hadn't been preparing" for the day Audrey would come home with a "clean scan."
"I was preparing to bury my daughter," he said.
But, she came home and the family "sat back and asked what's next," he said.
It's life, he and Melissa said.
Now, the family has to "figure out what normal is," Ira said. "We're all trying to find our spot and how to co-exist together. It's all from a different reference point."
Audrey is psyched to enroll in kindergarten in about a year and may still attend preschool this year, Melissa said.
In the meantime, she ventures outside to see the 30 chickens, two alpacas, nine or so sheep and two goats that the family has on their acreage.
She'll likely soon help Melissa tend to the small garden mostly because both Audrey and Cole love fresh vegetables.
She and Cole play together, like any other siblings. He shares her fondness for rubber rats and bugs.
"It's one foot in front of the other," every day, Melissa said. And, realizing that "the little, petty stuff doesn't matter."
All of the Hugheses want to help spread awareness of childhood cancer. September is Childhood Cancer Awareness Month.
Ira says families face similar difficult situations every day and if sharing his story helps them, he'll keep doing so. He blogs regularly about Audrey's journey at audreynoelle.com.
— Contact reporter Shelley Ridenour at 480-898-6533 or [email protected].
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