Figueroa’s fight

About a month before her wedding, Devann Hawley of Winchester found herself waiting in an Indianapolis hospital room.

She’d noticed weeks before that her 7-year-old daughter, Bella Figueroa, had developed pale skin, bruising and fatigue. She and doctors suspected leukemia, but they couldn’t find cancer cells.

They had been waiting weeks for an official diagnosis. Hawley recalled wishing her future husband, Lance, could be in hospital with her that day, but coronavirus restrictions only allowed one family member inside at a time.

“I wanted to crumble and never get back up, and now I had to do it by myself?” she said.

Doctors diagnosed Bella with aplastic anemia, a rare blood disorder that occurs when blood marrow fails to produce enough blood cells and platelets for the body to function normally. She underwent weeks of chemotherapy, months of platelet and blood transfusions, and a bone marrow transplant.

Now, more than 12 months following her diagnosis, Bella is recovering from the chronic condition that kills 70% of untreated people within a year.

She’s one of the children featured for Friday’s No One Fights Alone Benefit, a fundraiser hosted by Portland’s The 615 music venue.



Testing

In April 2020, Bella developed petechiae, or bruising resembling small, red dots.

“It started out with just like the bruising, she was very fatigued, short of breath, that kind of stuff,” recalled Hawley. “Any time she’d cry or get in the shower, she had bruising.”

Hawley initially dismissed her concerns about Bella’s bruising. After looking at pictures following dinner one evening, though, she noticed her daughter’s complexion had drastically paled along with dark circles developing under her eyes.

Bella, a normally energetic child, also began to take naps in the playroom. And, at one point, she told her mother every time she’d yawn, she couldn’t breathe.

That’s when Hawley decided to take Bella to a medical professional.

“I left work,” said Vicki Everhart, Bella’s grandmother, remembering getting the call from Hawley that they were headed to Peyton Manning Children’s Hospital of Indianapolis because the doctor suspected leukemia. “I was a mess.”

After testing, Bella showed no signs of cancer. It took weeks for doctors to determine the cause of her symptoms: aplastic anemia.

“Basically her bone marrow just stopped working,” Hawley explained. “There’s no rhyme or reason for aplastic anemia, it’s just a rare condition that happens … Her body just kind of forgot how to work.”

Bella was also diagnosed with Shwachman-Diamond syndrome, a gene mutation that can affect the bone marrow, pancreas and skeletal system. (Other than the gene mutation, Hawley said, she shows no symptoms of the syndrome.)



Treatment

Doctors started Bella on horse antithymocyte globulin, an antibody infusion derived from horses and used as therapy for aplastic anemia patients’ cells. Even with the treatment, Bella was still receiving weekly platelet and blood transfusions and making two or three trips to the hospital in Indianapolis each week.

Bella was transferred in January to Cincinnati Children’s Hospital Medical Center for several weeks of chemotherapy. On Feb. 25, she began a bone marrow transplant. Unlike organ transplants, Hawley said, bone marrow cells are pumped into the recipient. Afterward, nurses celebrated Bella’s “re-birth day” as her new cells adjusted to her body.

The road to recovery wasn’t easy, Hawley noted. She and Bella spent about four months in Cincinnati. Much of that time they spent living in a hotel.

Hawley spent weekdays with Bella, and Bella’s father, Oscar Figueroa, stayed with her on the weekends while Hawley would go home to be with her husband and 2-year-old daughter.

Bella needed to stay within 20 minutes of the hospital for about 100 days after the transplant in the event her condition worsened.

“(She) wasn’t the same little girl that went in there,” Everhart said. “She had no energy. She could walk from the couch to the bed and she had to take a nap. That was hard.”

Her new cells were still weak, meaning she would be immunocompromised for about nine to 12 months following the procedure. Hawley likened her daughter’s new cells to those of an infant’s.

“It’s like having a newborn all over again,” Hawley said.



Today

Bella and her mother returned to their home in Randolph County at the beginning of June. Since then, Hawley said she’s been doing well. In her current state, Bella takes medicine twice a day and wears a N95 face mask around others. She spends most of her time at home and is currently taking virtual classes with hopes to return to in-person learning in January.

Hawley, 27, returned to work at SLAY Beauty Lounge in July. She’s also about seven months pregnant.

The other child featured in this year’s No One Fights Alone benefit is 12-year-old Skyler Esparza of Portland. He underwent treatment earlier this year for acute myeloid leukemia. Skyler’s father, Tony, works with Everhart at Ardagh Glass Manufacturing Plant in Dunkirk. They bonded through Bella and Skyler’s diagnoses, and Tony later connected Bella’s family to Tim and Cindy Morris of The 615.

The third No One Fights Alone benefit will run from 6:15 to 10:15 p.m. Friday. There will be live music performed by the John Beatrice band of Farmland and a silent auction with funds going toward the Hawley and Esparza families. Food will be provided.