‘She’s helping people believe’: Fort Worth girl with 1-in-a-million cancer needs liver
The 6-year-old in pink furry socks shuffles across her family’s hardwood floors in pursuit of her siblings, her clean-shaven head the only sign of the so-called 1-in-a-million cancer inside her liver.
Adriana Nixon’s older sister, 9-year-old Alana Nixon, and her younger brother, 5-year-old LeeAndrew Nixon Jr., are playing the bad guys on the run. She’s the cop.
She heaves a Nerf gun bigger than her arms as she chases them through their front room, also known as the playroom, running past shelves of her Lego sets, a table of arts and crafts supplies and piles of books. They run down a hallway to the back room, where their parents, Andrea Pederson, 39, and LeeAndrew Nixon, 35, have on the evening news. They run to the front again.
Adriana, clad in a black and purple T-shirt bearing a cancer ribbon and the message “Not going down without a fight,” drops to the floor. She reloads foam darts into her Nerf gun before springing to her feet.
“I’m evil!” she shouts into the air. But her smile, revealing her missing two front teeth, gives her away.
She has said she would like to be a police officer one day, and in the morning she would get her chance. The next day, Jan. 7, she was set to become an honorary Fort Worth police officer in a ceremony at the department headquarters.
It’s far from the only attention she’s received over the past several months, from the trip to Legoland in Florida through Make-A-Wish to the celebrities she’s gotten to meet like former Texas Ranger Derek Holland, who invited her to a game at Wrigley Field in Chicago. She has a Facebook page, #AdrianaStrong, where her parents share weekly updates to more than 3,000 followers.
But in simple moments of play around the home, when she’s being an ordinary 6-year-old free from the concerns of cancer, it can be easy for her family to only see Adriana, not the girl with the mystifying diagnosis.
It can be easy to forget how much their day-to-day lives have been changed by circumstances they never thought they would have to face.
In June of last year, Adriana felt a sharp pain in her stomach that wouldn’t go away, and she and her parents went through repeated ER visits, doctors’ appointments and misdiagnoses until they learned the hard truth. She had hepatocellular carcinoma, or HCC, in her liver.
St. Jude Children’s Research Hospital estimates less than 1 in a million children are diagnosed with HCC. Without factors like alcohol use or chronic hepatitis to point to, the development of the disease in a child like Adriana can defy any easy explanation.
If the tumor, like hers, can’t be operated on, the only cure is to replace the liver. That begins with getting onto a transplant list, which can only happen when doctors determine the cancer hasn’t spread.
Since late November, Andrea and LeeAndrew have allowed the Star-Telegram to follow their journey as they tried to get Adriana listed while she received chemotherapy and about a dozen other medications to fend off the cancer. Doctors at Cook Children’s Medical Center in Fort Worth have told them there’s no “road map” with this disease, no proven plan of treatment. So they go into each week unsure what to expect but prepared for any possibility.
The goal has been getting Adriana to a point where she could pass an evaluation performed by liver transplant specialists at Children’s Medical Center Dallas. This would be her second evaluation, after she was denied last summer because giving her a liver transplant was deemed too big a risk.
Andrea and LeeAndrew have tried to shoulder the stress of this situation for Adriana, telling her only what she needs to know so she can be the same kid they’ve always known. Their goofy yet compassionate 6-year-old, who says she wants to be a police officer not only so she can arrest her little brother but also so she can “help sick kids like me.”
“We don’t want cancer to win or take precious moments away from her,” Andrea said while watching her kids play cops and robbers that night in January.
‘Smiley’
Alana, the first child Andrea and LeeAndrew had together, had said she wanted a little sister for as long as they could remember. They wanted to give her one.
The couple met about six years before they had Alana when a mutual friend set them up on a blind date. They hit it off immediately, according to Andrea, but she knew he was going to be a good partner when she saw him becoming a father to her three boys — ages 23, 21 and 14 — from her previous relationship.
When she got pregnant with Adriana, they were happy to be able to bring a sister home to Alana.
Andrea had one question for the doctors when she was delivered.
“She was like, ‘Is it a girl?’” LeeAndrew remembered with a laugh.
“Making sure,” Andrea said.
She was a perfectly healthy baby who had a big personality, slightly “bossy” and full of energy, always wanting to keep up with her older sister, Andrea said. It didn’t take long for a nickname to stick: “Smiley.”
Her proud mother is quick to point out how Adriana grew into an advanced student at Lowery Road Elementary School who also made the all-star team her first season playing softball. Adriana says it’s her favorite because of the home runs — and she even got one once.
There was no sign she was anything but a normal 6-year-old girl until a car ride almost nine months ago.
“We were going to give people popcorn,” Adriana still remembers.
She was riding in the backseat of Andrea’s SUV, bags of popcorn piled high behind her. They were driving from home to home, giving the bags to people who had ordered them from her brother’s basketball team.
All of a sudden she could feel her heart pounding inside her chest.
She told her mother, who took off for the emergency room, alarmed. Adriana had already told her parents she felt pain in her abdomen. Doctors at the hospital reassured her, however, it appeared to be a stomach virus — Adriana could go home and rest.
But the pain didn’t go away, and she developed new symptoms.
Her stomach swelled into a hard, round ball. She started losing weight rapidly in her arms, shoulders, legs. She became uncharacteristically weak, only wanting to sleep.
Still, when they took her to the ER or their personal physician at Cook Children’s, they were told stomach virus. Maybe constipation.
By the fifth time they brought her in, medical staff wouldn’t let them leave until they could figure out what was wrong.
The doctors were straightforward when, days later, they told the family she had cancer. Two weeks after that, they knew it was HCC.
The feeling of shock — that this all feels like a bad dream — didn’t go away. “It tingles you every day, every step, every minute,” LeeAndrew said.
Adriana was diagnosed with a form of cancer so rare there is little known about why it develops in children and why it is so resistant to chemotherapy.
“You’re in a state of just being numb,” Andrea said.
‘It’s not anyone’s fault that this happened’
Experts who spoke with the Star-Telegram say HCC is seen so rarely in children there’s far less research on the cancer compared to others — fewer studies conducted, trials offered and records kept about cases across the U.S.
Dr. Cynthia Herzog, a rare tumors specialist at MD Anderson Cancer Center in Houston, said, “There’s just so few cases in children it’s hard to make advances.”
Maybe 100 children across the U.S. are diagnosed with liver cancer every year, and 60 percent or likely more of those cases involve the more common hepatoblastoma, she said. She’s only seen five to 10 cases of children with HCC during her 27-year career at MD Anderson, considered one of the top cancer centers in the U.S.
Dr. Amber D’Souza of St. Jude Children’s Research Hospital said there are a number of underlying genetic disorders that could causes cirrhosis of the liver and eventually HCC. But a lot of times doctors can never determine the root cause.
“We really try to stress that it’s no one’s fault that this happened,” said D’Souza, a pediatric oncologist. “It is not the kid’s fault. It is not the parents’ fault. It is not the grandparents’ fault, the neighbor’s fault — it’s nobody’s fault that this happened.”
Andrea and LeeAndrew said perhaps the hardest part of learning they have a child with HCC is feeling as if they’re alone, with no one to turn to whom they can ask for advice.
They have instead had to rely on each other, Andrea said.
LeeAndrew will step in if she’s ever feeling “overwhelmed” or like she “can’t handle things,” she said. She can do the same for him.
Finding a path with no road map
Most children who are diagnosed with cancer spend around 10 days in Cook Children’s Medical Center so they can get started on their treatment before returning home. Adriana had to be admitted for 50 days.
She began chemotherapy and had several scans, but the part of her stay with the biggest implications for her future came when she and her parents went to Children’s Medical Center Dallas, with its pediatric transplant department that coordinates with Cook’s. She would have to take more tests while her parents met with doctors, surgeons, social workers.
Many of their conversations revolved around what would happen after the transplant, so they allowed themselves to feel hope.
But a doctor told them calmly and directly Adriana wouldn’t be listed.
A letter explained the reasoning. Andrea has never read it.
“It’s very heartbreaking because it’s also, in a way, based on their opinion. Because they say it’s too risky, but at the same time, everything is a risk,” she said. “Chemo is a risk. Surgery’s a risk. Just because she has cancer it’s a risk that she could have a secondary cancer.”
When she and LeeAndrew went home, upset about the decision, they didn’t initially realize Adriana would be able to come in for a second evaluation. All they felt was rejection.
But they set out together on their new normal.
The cancer “affects every aspect of your life,” Andrea said.
LeeAndrew, who did contracted professional flooring work, stopped working so he could take care of Adriana full-time. Andrea, meanwhile, kept working in the technology department of the Everman Independent School District so they could continue earning a salary, and her grandparents moved in to help out.
Andrea and LeeAndrew try to both take Adriana to her weekly clinic at Cook’s, where doctors draw blood to determine if she needs more chemotherapy. When she undergoes her 21-day chemo cycles, she receives multiple six-hour treatments of medication through a port inserted underneath the skin above her heart.
LeeAndrew is responsible for making sure she takes all her medication — the chemotherapy pills to fight the cancer, appetite stimulants to get her to eat, vitamins to boost her immune system.
Andrea updates a list on her iPhone each day documenting every step of Adriana’s journey and also posts regularly to the Facebook page. She signs her posts with the hashtag #KnowHerName, she said, because “she matters” and “her situation matters.”
And she reads all the comments from the people who have been inspired by her daughter.
“I think it’s just her,” Andrea said of Adriana’s impact. “She’s helping people believe.”
‘A brave one’
In December, doctors told LeeAndrew and Andrea that Adriana would need surgery to remove lymph nodes from around her liver to be tested for cancer. If the results were positive, that would mean the disease had spread, and she wouldn’t even get a second evaluation.
At this point, she had undergone five rounds of chemotherapy. The upcoming surgery meant she would need more so she could be ready.
The medication feels “tingly” when it’s pumping into her veins, and it can leave her tired or nauseous days later, but Adriana said it doesn’t bother her too much. She also doesn’t mind when the doctors have to draw blood, or give her a Neulasta shot, or put her into a large and loud piece of equipment like an MRI machine.
Her main concerns, on her good days, aren’t unlike those of any typical 6-year-old girl.
She wants to play with her Legos or her dolls, goof around with her siblings, turn boring situations into fun ones.
On a day before Christmas, she was sitting upright in a red bandana in her hospital bed at Cook’s, exhausted after a chemo session. She was working on a gingerbread man, adding peppermints for eyes, an M&M smile and Kit-Kats — her favorite candy — for arms. She then squeezed a half-empty tube of sugary icing onto its feet with all her might.
She clenched her teeth, letting out an umph.
“That’s how you get your strength back,” LeeAndrew, seated in a nearby chair, told her.
Adriana says she doesn’t mind her occasional home at the hospital. She likes looking to see if her favorite service dog, a “lazy” golden retriever named Chanel, is there so she can pet her. She likes methodically putting together Lego sets made up of thousands of pieces, which can take her a couple days to complete.
Alana is often at the hospital playing Minecraft on the Xbox with her, and she can recall a lot of the things Adriana can’t — the medications she doesn’t like, the times she has felt low and persevered.
On one occasion, she had to go to the ER because she couldn’t stop vomiting. The feeding tube in her nose, which gives her nutrients when she can’t eat, ripped out.
“She’s a brave one,” Alana told the Star-Telegram during one visit. “She is a special little kid, and when I found out she has cancer, I was really worried.”
For Christmas, the sisters each received a silver necklace with a half-heart on the end, each one part of a whole. The inscriptions on both read, “Best Friends.”
Adriana also got one more Christmas present: With her big surgery fast approaching, she didn’t have to take chemo for the first time in five months. And she could be home for New Year’s.
About a week before her surgery, a dream of hers came true when she was sworn in as an officer at the Fort Worth Police Department headquarters in a navy uniform, cowboy hat and boots. She and Alana were treated to a surprise helicopter tour of the city over TCU, the Fort Worth Zoo, overlapping interstates.
“That’s all we need — we need her to have fun every day,” LeeAndrew told media gathered at the event. “Try to keep a smile on her face.”
The surgery went as expected and, two days after that, the surgeon came into their room to tell them the cancer hadn’t spread.
There were hugs and shouts of joy, Andrea remembers.
Adriana had a shot at her cure.
Adriana’s cure
Adriana sat with her parents in a conference room inside Children’s Medical Center Dallas, the same place where she was denied a liver months earlier.
The surgeon told them how Adriana’s name had come up several times since August and how they were encouraged by the results of the surgery.
Andrea, though she felt nervous, believed Adriana would be listed. Her hope was grounded in facts this time, like that her tumor had shrunk and that the cancer hadn’t spread.
“We had more information,” she said. “We were more prepared than last time.”
For three days — Jan. 29, 30 and 31 — Adriana had labs drawn and underwent tests. Andrea was under the impression they wouldn’t find out the results until later in February, so when they left the hospital, they prepared to go on their planned trip to Los Angeles. It’s on a list of places Adriana has wanted to visit.
Andrea’s phone rang as they stood in line at DFW International Airport waiting to board the plane. The familiar number on the caller ID let her know the call was from the hospital.
LeeAndrew leaned in close to the phone.
They both heard the good news: Adriana could be listed for a liver. They started yelling in the crowded airport.
“Everybody was looking at us,” Andrea said. “After I got off the phone, I was still in shock — a good shock not a bad shock.”
During their trip, they went to the Staples Center, where Adriana wrote a message to Lakers legend Kobe Bryant days after his sudden death. They went to a pop-up store for LOL Surprise!, a brand of miniature big-eyed dolls Adriana loves.
On the beach outside the Santa Monica Pier, a friend of Andrea’s picked up a rock and etched a message into the sand for Adriana to pose next to: “Adriana Nixon. Listed.”
Her parents don’t know when they will get a call saying it’s Adriana’s time to get a liver. She will have to undergo more tests to make sure she’s still in good condition.
But they’re ready for that next step, their bags already packed.
Andrea feels like everything that’s happened so far has only been part of her daughter’s journey.
Getting a liver — that will be the next part.
“That’s like a whole new chapter, I guess you could say,” she said. “That’s part two.”
This story was originally published February 9, 2020 at 6:00 AM.
