For two years, Gary and Charlene Parrish had their bags packed, ready to go on a 50-minute flight to Pennsylvania. They were waiting for a phone call from the Children’s Hospital of Pittsburgh telling them a liver was ready for their 14-year-old daughter, Brooke.
The call came at 10 p.m. Oct. 5. Two days later, Brooke underwent a 10-hour surgery and emerged with a new liver – and the possibility of a normal, healthy life.
Brooke is back in her family’s Rolesville home, recovering from the transplant doctors performed after she was diagnosed with hepatopulmonary syndrome, a rare liver disease that causes low blood-oxygen levels.
The Parrish family has done it all before – the doctor visits, the hospital stays, the uncertain moments.
In 2006, Brooke’s brother, Gregory, died of neurofibromatosis, a genetic disease that disturbs cell growth in the nervous system. He was 12.
The family hadn’t fully recovered, emotionally or financially, when Brooke got sick in 2012.
Although the transplant was a success, Brooke’s recovery will take time. She takes 10 medications every day, but eventually that number will be reduced to two. She could return to Rolesville High, where she is a freshman, as soon as February.
Now, Brooke’s neighbors are banding together to help the Parrish family pay for years of medical expenses for two children.
“The road is not over,” Charlene Parrish said.
“But the scariest part is over,” Gary Parrish added.
‘All over again’
Brooke caught a cold in 2012, and her low blood-oxygen levels landed her in the hospital.
She had always been quick to run out of breath and tire. It was especially obvious during softball practice, Gary Parrish said. Brooke was always the last of the girls to finish running a lap, and as practices went on, she couldn’t muster as much strength to throw the ball.
Doctors at UNC Hospitals ran tests to determine if she had a lung condition but were stumped when everything came back normal.
So they asked around the medical community, and eventually a doctor in Pittsburgh said he had seen the disease before.
The Parrish family made the nine-hour drive to Pittsburgh every three to six months for testing. Doctors quickly determined Brooke needed a transplant, and she went on the national transplant list, which typically has a year-long wait.
“When we found out it was a liver issue, we were devastated,” Charlene Parrish said. “Our hearts were broken because we were doing this all over again.”
Gregory’s disease caused tumors all over his body and damaged the optic nerve, leaving him blind. He underwent numerous treatments and surgeries.
The pain of losing their son was still so fresh, so raw, when the Parrish couple heard Brooke’s diagnosis.
“I was not losing another child,” Charlene Parrish said.
As Brooke waited for a liver, she went on with her life, making videos on her iPad and hanging out with friends at home. She didn’t ask many questions about what has happening.
“I didn’t really want to know,” she said.
Help from neighbors
A transplant can be financially devastating for any family. Although the Parrishes have health insurance, they were still dealing with medical expenses for Gregory, and the costs of travel and co-pays for Brooke added up quickly.
The family estimates they have spent at least $50,000 for medical expenses for Brooke and Gregory, including the cost of Gregory’s funeral.
“It’s an awful, astronomical amount of money,” Charlene Parrish said.
A liver transplant can cost about $600,000, according to the United Network for Organ Sharing. The Parrishes are unsure how much they will be responsible for paying.
Neighbors have joined together to raise more than $15,000 through the Children’s Organ Transplant Association, which provides financial assistance to families dealing with a transplant.
That money will help cover some of the bills.
Gary and Charlene Parrish had to take lots of time off work to deal with their children’s illnesses, making it tough to keep up with day-to-day expenses.
Coworkers donated paid time off to Gary, a mail carrier for the U.S. Postal Service. Charlene is almost out of leave at her job as a teacher assistant with the Wake County school system. She’s been asking coworkers throughout the entire county if they will donate time off.
Money aside, the family is realistic. Brooke’s body could reject the new liver at any time.
But they’re all looking forward to the day Brooke’s fingers won’t turn blue when she walks up the stairs and her oxygen levels are in a normal range.
“She’s never known what that feels like to be good,” Gary Parrish said.