Another chance to ‘enjoy happy’ after Wichita toddler comes home from hospital

Over the next 12 months, at one west Wichita home, the focus will be on the pleasures of life that often go unnoticed.

Deep belly laughs.

Bright, wide smiles.

Toddling around coffee tables.

Stirring cookie dough together.

Cuddling and dancing to favorite songs.

It has been what some people would call a “bumpy ride” for Ryan and Brynne Mulloy. Their daughter, who turned 2 in November, has spent nearly half her life in hospitals.

Eevie Elouise Mulloy was diagnosed shortly after birth with congenital acute lymphoblastic leukemia, a rare childhood blood cancer that affects 1 in 5 million newborns and has a devastatingly low survival rate. She was 6 months old before she got to go home with her parents for the first time.

Her latest hospital stay – 2 1/2 months at the Children’s Hospital of Philadelphia – was feared to be her last by her father, a Wichita police officer, and her mother, a post-doctoral fellow at the University of Kansas School of Medicine-Wichita.

But despite numerous setbacks, Eevie has returned home. And her parents say that has led to a change in philosophy.

The Mulloys say Eevie’s illness has made them “day-to-day” people. They dream about the long term, they say, but they focus their lives on “just trying to enjoy happy” for now.

“I think we’ve been afraid to enjoy happy for so long,” Brynne Mulloy said. “You know, there’s always questions in our heads about what’s going to happen next.”

The goal for 2016 is “to try a little harder to just enjoy feeling good and to not worry so much,” she said. “To not crowd out the happy with what may or may not be.”

Eevie had managed to make it through intensive chemotherapy for the congenital leukemia and finally was considered cancer-free in 2015. But she wasn’t thriving.

In August, Eevie’s parents noticed a mysterious rash spreading across her petite body. It persisted. Eevie lost weight. She was lethargic. Her immune system weakened.

Doctors didn’t know why.

“All of my instincts – I could feel her light was going out,” Brynne Mulloy said recently, remembering when Eevie fell inexplicably ill over the summer.

The Mulloys said that after a short stay at Wichita’s Wesley Medical Center, Eevie was transferred to Philadelphia. There, different, “horrific” possible diagnoses for the rash and lethargy came from pediatric doctors each week: mite bites; a genetic skin disorder; cystic fibrosis; a second cancer; other debilitating diseases.

Eevie also suffered two dangerous infections during her stay, her father said.

It left the couple wondering whether their only child would die.

“It kind of felt like waking up and seeing your child out in the middle of the road and begging cars to swerve and not hit her,” Brynne Mulloy said.

“It just felt like we were constantly watching something horrible come right at her.”

Ultimately, the doctors in Philadelphia told the Mulloys their daughter has severe combined immunodeficiency. It’s also known as the bubble boy syndrome.

Essentially, Eevie’s body is attacking itself.

The harsh chemotherapy to treat the congenital leukemia was the cause, Ryan Mulloy said.

“The chemo wiped her immune system out so bad,” he said. “Part of it grew back, but not fully. So she has some of her immune system, but it’s attacking her own cells and is not functioning properly.”

The diagnosis means Eevie’s environment needs to stay germ-free until her body either regenerates the missing blood cells on its own or she receives a bone marrow transplant. The Mulloys say they have already undergone donor testing.

They will know whether Eevie needs a transplant in three months.

On Dec. 22, after more than two months in Philadelphia – a stretch that included her second birthday – Eevie was discharged. Ryan and Brynne Mulloy say their daughter’s own persistence got her home in time for the holidays.

It was like she didn’t want to miss it, they said.

“It’s sheer bliss. It’s the same home, but it’s such a completely different home with her back in it,” Brynne Mulloy said.

Ryan Mulloy broke in, a catch in his voice. “It’s like we have another chance with Eevie all over again.”

This story was originally published January 3, 2016 at 11:40 AM with the headline "Another chance to ‘enjoy happy’ after Wichita toddler comes home from hospital."