Music from the Disney movie “Moana” and the sound of children’s laughter wafted through the fellowship hall of Bay Leaf Baptist Church. Pizza boxes were stacked high, and a cake with pink, purple and blue icing read, “We love you, Avery!”
Five-year-old Avery Neill had a lot to celebrate. She had finished 30 rounds of radiation that shrunk the inoperable brain tumor that could take her life by the end of the year.
“She rocked it,” Emily Neill, Avery’s mother, said of the daily trips to Duke Hospital in Durham.
The Neill family of Raleigh invited relatives, friends and even Avery’s oncologist to the end-of-radiation party Feb. 17. Some people wore Hawaiian shirts in honor of the “Moana” theme, but many more wore T-shirts that read, “Be Brave, My Heart, Have Courage, My Soul.”
The shirts are sold on a Facebook group called “Bravery For Avery” that has more than 48,000 members – family, friends and strangers who are cheering for Avery every step of the way.
The party marked a milestone, but Avery’s medical journey continues. The family is going to the Children’s National Medical Center in Washington, D.C., to work with a team that specializes in the kind of rare brain tumor afflicting Avery. They hope to slow the progression of the disease with a combination of chemotherapy drugs while allowing Avery to enjoy being a kid who likes to play with her twin sister, Bekah, and her 3-year-old brother, James.
Avery was diagnosed in December with diffuse intrinsic pontine glioma, commonly called DIPG. About 300 children are diagnosed each year, most between the ages of 5 and 10, when dramatic brain development takes place.
The tumors, which have no known environmental or genetic cause, carry a bleak prognosis: Children with the disease typically live nine to 12 months after they are diagnosed.
Emily Neill, a neonatal intensive care nurse at WakeMed’s main campus in Raleigh, noticed in October that Avery had developed a crooked smile and had stopped fully blinking her left eye. She figured it was a tic and that her little girl would be fine, but it bothered her.
“Even as a nurse, I had a brain tumor in the back of my mind,” she said. “It concerned me more than anyone.”
She pushed to have Avery referred to a neurologist. Avery had an MRI on Dec. 14, and the family received the devastating diagnosis the next day.
“They told me not to Google it,” Emily Neill said, noting that three oncologists and a social worker were there to meet with her and her husband, Andy Neill. “You know the news isn’t going to be good.”
Doctors in Washington, D.C., did a biopsy of Avery’s tumor, and the family returned home on Christmas Eve, just in time to go to church.
“Jesus has a plan in all of this,” Emily Neill said. “It all kind of fell into place. It was a bittersweet Christmas.”
Dr. Dan Landi, Avery’s oncologist at Duke, went to the party with his wife and their 3-year-old twin boys. He said Avery’s condition “is probably the worst brain tumor.”
“This was something very bad,” he said. “We had a very honest discussion with Emily and Andy. The best part of my job is working with families who celebrate good times. They understand things aren’t going to stay good.”
Now that radiation treatments are over, Landi said, “the next month will be really good for her.”
The Neills will leave Saturday to spend a week at Disney World, a trip courtesy of Make-A-Wish Eastern North Carolina. They plan to take two more vacations before Avery begins chemotherapy in late March.
More than anything, they want to make the most of these precious months.
“We need to make this year count,” Emily Neill said.
‘I looked in my Bible’
Andy and Emily Neill, both 31, started dating four days after they graduated from Enloe High School in Raleigh, where they were both in the band. They stayed together as Andy went to N.C. State University and Emily headed to UNC-Greensboro.
They finished college in the spring of 2008 and were married that October. Emily started her career as a nurse, and Andy is now an engineer with Hipp Engineering & Consulting in Raleigh.
The couple were thrilled when they found out they were having twins. But the girls had to overcome medical issues from the start. Avery and Bekah were born nine weeks early and spent the first six weeks of their lives in the neonatal intensive care unit where their mother works. Avery weighed 2 pounds, 9 ounces.
“She and her sister grew into spunky young ladies who are best friends!” according to the Facebook group. “Bekah is the brainy one. Avery is the motherly, nurturing one.”
Bekah doesn’t always understand that her sister is sick. To her, some one who’s sick has a cough or a runny nose.
“So we’ve explained you know, Avery has a boo-boo in her head,” Emily Neill said. “We can’t fix her boo-boo.”
Avery is spending a lot of time these days in hospitals and doctors’ offices, where she can easily recite her date of birth – 6/2/2012. She also knows how to spell her whole name, Avery Ann Neill.
“I know how to do Ann because I looked in my Bible,” she said.
For radiation, Avery had to be sedated for every treatment – five days a week for six weeks.
“It’s good to have the radiation over with,” Andy Neill said. “Every morning, she asked, ‘Do I have to go to the hospital?’ And finally we got to say no. She was excited, and we’re all excited. She seems to be doing all right. She was having a blast riding her bike ... in the warm weather.”
Emily Neill said she cried for three days when she found out what was wrong with her little girl. But she tries to maintain a new sense of normal. The family eats dinner together, and plays together. She cut way back on her hours at the hospital, and she hasn’t had to cook a meal since Avery’s diagnosis because so many people have stepped in to help.
Andy Neill’s employer has hired a housecleaning service for the family.
This summer, Avery and Bekah might start kindergarten at Brassfield Elementary School, where their father attended.
Searching for a cure
Andy and Emily Neill are “absolutely” hoping for a medical breakthrough. For now, they focus on dealing with the symptoms: Avery wears bright purple glasses to correct her double vision caused by the tumor pressing on her brain stem.
Little progress has been made with DIPG tumors since astronaut Neil Armstrong’s daughter was diagnosed in the 1960s. But Landi, the Duke oncologist, said he is optimistic about the research and medical trials that are taking place. In recent years, doctors have started doing biopsies of the tumors, which can be tricky because the masses grow on the brain stem.
Although radiation can shrink the tumors, they usually continue to grow. Clinical trials have shown that common chemotherapy drugs, gene therapy and some other treatments don’t help.
Researchers around the world are trying to better understand the disease so they can develop new treatments and find a cure.
“You have to start somewhere,” Landi said of the research. “It’s sad. Of course it is. But our clinic is not a place for pity. It’s about action in a positive direction.”
The Neills are trying to remain positive and hopeful. The family has pulled together now more than ever.
“We’ve always been close,” said Don Willett, Emily Neill’s father. “This has made us become closer. Both families have done everything we can. Andy and Emily, they’re just a tremendous family. You couldn’t ask for any better people. And Avery and Bekah are our grandchildren, but they feel like our daughters.”
A story of courage
“Moana” tells the story of a teenage girl who sails across the ocean and overcomes hurdles to save her people and find out who she really is.
Avery and Bekah have watched the movie so many times their parents have lost count. They like the catchy music, the island costumes. They don’t realize it, but they are a lot like the brave main character who sets out on an incredible journey.
Calli McIntyre, a friend of the Neill family, sang “How Far I’ll Go,” the film’s theme song, during Avery’s party. Avery gripped her sister’s hand, and together they mouthed the words of the song: “If I go there’s just no telling how far I’ll go.”
As the party-goers walked through an array of bubbles – one of Avery’s favorite things – they found some 55 members of the N.C. State University pep band in the church gymnasium, playing the school’s fight song and also the “Moana” song.
Make-A-Wish Eastern North Carolina invited the band. “We are so glad we could be a part of this,” said Paul Garcia, director of bands for N.C. State.
Make-A-Wish also announced the trip to Disney, although Avery and Bekah had already figured out that surprise.
“We cannot tell Avery how proud we are of her, what she has accomplished, what she will accomplish, and what God will accomplish,” family friend Amanda Bailey told the crowd at the party.
Emily Neill started “Bravery For Avery” on Facebook to update family and friends on her daughter’s condition. She never expected it to gain thousands of members, including parents of children with DIPG tumors.
“People all over the world have heard her story. It is uplifting to me,” Emily Neill said. “How many 5-year-olds do this many people know about? Avery has a big testimony, and has reached so many people.”
The family is gathering a team to participate in Ella’s Race in Raleigh on March 24, which benefits The Cure Starts Now and the Pediatric Brain Tumor Foundation. Emily Neill has connected with Ella’s mother, Renae Newmiller, a strong local advocate for brain tumor research. Ella was diagnosed with DIPG in 2008 and died in 2012.
With the future uncertain, the Neills are now in the business of making memories.
“It feels so far away from us now,” Emily Neill said of the prognosis. “In six months, she could be incapacitated, or not here.”
Bekah, however, has other ideas about Avery.
“I think she’s fine,” she told her mother. “She’ll be fine.”
Susan Shinn Turner is a correspondent for The News & Observer. Email her at firstname.lastname@example.org.