Fort Worth girl with 1-in-a-million liver cancer feels ‘healed’ after transplant
Adriana Nixon was slightly annoyed when her father told her it was time to go get her new liver.
LeeAndrew Nixon got the call he and his wife, Andrea Pederson, had been waiting more than three weeks for on Feb. 27, one day before Adriana’s 7th birthday. She quickly grew agitated she would have to forego her long-planned party in exchange for more time at the hospital.
To her parents, though, this was a different kind of gift — the “gift of life” they had been praying for since their world was turned upside down in June 2019.
Doctors informed the Fort Worth couple the stomach pains and swelling their daughter had been experiencing were the result of stage 4 hepatocellular carcinoma, a form of pediatric cancer that researchers say occurs in less than 1 in a million children. The only available cure for Adriana was to replace the liver, which could only happen if and when doctors determined the cancer hadn’t spread. But even after that happened in early February, nothing was guaranteed.
Pederson, 39, happened to be in the emergency room with bad headaches on the day LeeAndrew, 36, got the call that they needed to be at Children’s Medical Center Dallas within the hour for her transplant operation. So he swung by the E.R. to pick her up and they headed out of town.
The couple, as grateful as they felt, were wracked with nerves on the car ride over. “You don’t know what to expect,” LeeAndrew told the Star-Telegram during a Zoom call on Wednesday. “You don’t know if we get there and then they tell us, ‘No, something went wrong.’”
After doctors and surgeons confirmed one last time through tests that her cancer hadn’t spread, she went into surgery.
Twelve hours later, Adriana was awake. And hungry.
“That’s the first thing she said: ‘Can I eat now?’” LeeAndrew recalled.
“Later that evening, we went into her room,” Pederson added. “She said that she felt healed and she felt like she had been there before.”
Staff at Children’s Medical Center told the family Adriana’s operation could be the only HCC transplant they will perform this year, Pederson said. The cancer is so rare across that little research is done into why it happens in otherwise healthy children like Adriana.
Her doctor in Dallas reported that her body accepted the new liver, and Pederson and LeeAndrew are hopeful it can last her for the rest of her life.
They knew Adriana would have to spend six months in isolation, even before the coronavirus pandemic, which has only strengthened their resolve to avoid going out and wear masks as often as possible. It’s been an emotional time for the entire family, which includes Adriana’s three older brothers and one little brother.
It has represented the end of one long journey and the beginning of a new one.
The Star-Telegram kept up with the family for a couple of months at the end of 2019, as Adriana was going through rigorous chemotherapy sessions and the family was waiting to hear that she could be listed for a liver. Now, not only does she have her liver, but a CT scan in June revealed there was no evidence of the disease.
There’s still a long road ahead for Adriana as she recovers from the “aftermaths of chemo,” as Pederson described it — from regaining her strength to adjusting to her new hearing aids due to permanent ear damage from the treatment. She continues to report to Children’s Medical Center and Cook Children’s Medical Center for regular check-ups.
“But we’re in a very beautiful place,” Pederson said on Wednesday.
LeeAndrew has learned over the past year that “having a kid with cancer — it’s the toughest thing in the world,” he said.
It affects not just one person, he said, but a whole family. And he knows their family still has a lot of healing to do.
“The good part about it is that Adriana made it to the point where she’s at,” LeeAndrew said. “It was a lot of stages we had to get through. It was a lot of us trying to stay happy.”
‘No words to describe how thankful we are’
Adriana still has moments she feels sad about all she has to do when she would rather just be a normal 7-year-old girl. On Wednesday, she didn’t feel like talking during a Zoom call with the Star-Telegram, pouting as she turned around and laid her clean-shaven head onto LeeAndrew’s shoulder.
The interview was interrupting her free time and — worse than that — her parents were using the very iPad she likes to play her games on.
Through this period of strict quarantine, she and her older sister, 9-year-old Alana Nixon, have kept busy by playing softball, riding their scooters and even attending a weekly online summer camp. Instructors give them arts and crafts activities to complete along with online games like a virtual hike.
“She’s been doing good,” Alana said of her younger sister.
The family feels grateful she has made it to this place that one year ago seemed so far away. All they know about the liver donor, Pederson said, is that it came from a boy her age who died. “He really is a superhero and there are no words to describe how thankful we are,” she said.
Moments before Adriana went into surgery on her birthday, someone came into their room to give them a gift from the family. The person, a caregiver for the family, presented them with a small stuffed bear with brown fur and a green bow. It was the boy’s “prayer bear,” Pederson said.
The toy is a symbol to them of the family’s sacrifice, and the life they were able to give their daughter.
Adriana sleeps with the bear every night.
“We keep this bear safe with us all the time,” LeeAndrew said.
This story was originally published July 16, 2020 at 8:03 AM.
