Just days before Grace Emery died of cancer, she was living out her dreams.
On the wings of a foundation for kids with cancer, Grace, her mom and a team of medical staff took a corporate jet to New York City on Friday, June 29 to knock off two of three items on Grace’s bucket list: See a Broadway musical and meet Buddy Valastro, the host of TLC’s “Cake Boss” reality show.
After seeing “Wicked” and visiting Valastro’s set, Grace got autographs, free pastries and a whole lot of swag. She got back home at 3 p.m. Saturday, flopped into bed and slept for three hours. At midnight, she asked to go to the hospital.
“They moved her right upstairs,” said Grace’s mom, Linell Pierce. “About 30 hours after we got home, she passed away.”
Grace Emery, a Milton High School junior, was 17. She died July 1.
Family, friends and her medical team remember Grace as a fearless, curious girl who had very few “poor me” moments despite her diagnosis of neuroblastoma, a tumorous cancer that took refuge near her spine.
She didn’t make it to school every day, and she eventually had to give up field hockey and theater but not before pushing herself, sometimes beyond her limit.
“She would do everything,” remembers Paul Curtiss, MHS drama teacher. “’Til the minute she died, she was doing everything she possibly could.”
In 2002, 7-year-old Grace was enrolled in summer soccer when she began getting severe pain in her tailbone. Sometimes warm showers would help, but the pain worsened.
A round of tests later, and Grace was referred to the pediatric oncology unit at Fletcher Allen Health Care in Burlington. She was diagnosed with neuroblastoma on her 8th birthday, Oct. 5.
Doctors removed about 80 percent of the tumor, but Grace still underwent chemotherapy, radiation, and, later, stem cell therapy in Boston. The result of the latter was “the worst Hollywood version of what you could expect,” said Mike Campbell, Grace’s stepfather: Her lips were scabbed over, and her eyes were totally bloodshot. Black spots dotted Grace’s tiny body.
“One tear just came down her cheek, and she just said, ‘Sorry,’” Campbell recalled. “The last thing she had to do was apologize to any of us.”
Unselfishness was a hallmark of Grace’s personality.
Grace was Jennifer Dawson’s first patient as a child life specialist at Vermont Children’s Hospital in Burlington. Dawson’s job, basically, is to make the hospital “not scary” for kids with cancer. She recalled Grace telling her she was fine and that other children, especially the infants, needed Dawson’s attention more.
“No matter how lost things were in her world, there was always someone she was worried about,” Dawson said. “We kind of learned that whatever trouble you have … there’s always someone worse than you around the corner.”
And sometimes it seemed like Grace would pull through. Each time Grace got a clear test, Pierce would start counting toward five years, a benchmark used to estimate survival. Then she’d have to restart the clock.
“That’s what’s really hard about cancer … You are lulled into thinking if you do the best that you can and everything you’re supposed to do, things are going to be OK in the end. And cancer’s not that way all,” Pierce said. “It gets the upper hand every time.”
When things looked bad for Grace, the Make-A-Wish Foundation was called in and made over Grace’s room to look like a flower shop. Each wall was painted a different bright color.
But Grace really wanted a playhouse. So Campbell sold his Mazda Miata sports car, bought a kit and got to work.
Billy Sawyer, who built Pierce and Campbell’s home, chipped in, as did their neighbors, the Knights and Morses and many community members. A cadre of Pierce’s former students (she’s an MHS social studies teacher) donated building materials, siding and labor. Campbell worked from dawn until 11 p.m. to finish.
The result is a little girl’s dream house: The gray and purple, Victorian-style home is complete with a play kitchen, desk, couch and TV with working cable. This summer, it will be moved to Camp Ta-Kum-Ta, the So. Hero camp for cancer patients or survivors age 7 to 17.
“We made sure she understood this was going to be a legacy,” Campbell said.
As Grace got sicker, she spent more time at home and the hospital and less at school. This only increased her greatest fear about dying: that she would be forgotten.
Ted Kessler, director and founder of Camp Ta-Kum-Ta, promised Grace that would never happen.
“Just mention her name, and you’ll get a story immediately,” he said.
Kessler shared two of his favorites: Grace was apprehensive about her first camp week but was immediately hooked. Her second year, Grace told Kessler that one day, she’d take his job as director.
Kessler was also Grace’s date for the camp prom – that is, until her last year, when she took one of her peers. Kessler liked to joke, “She threw me away for a younger man.” Grace would put her hand on her hip and laugh at every retelling.
“She never threw me away,” Kessler said last week. “I’ll never forget her.”
Curtiss, the drama teacher, and Michaela Halnon, one of Grace’s friends, remember Grace never letting her illness get in the way.
Both recalled Grace’s performance in the one-act “Rimers of Eldritch” as a freshman. Milton Drama’s rendition made it to New Englands, held in Falmouth, Maine that year, and Grace played Eva, the victim of an attempted rape.
Grace, Michaela and another friend took a Broadway dance workshop before the show, and Grace felt sick afterward. But after a nap, the show went on, and later, the school’s theater director, Dede Waite, told Grace she was the best performer the whole day.
Grace took AP classes and played field hockey, once stopping another player twice her size. She was the Children’s Miracle Network ambassador and met then-President George W. Bush.
She went to Milton’s prom this year, despite being in a wheelchair. She was the last to leave. She attended the American Cancer Society’s Relay for Life and stayed well past midnight with “Grace’s Gaggle,” the team Michaela organized.
And then there was her trip to New York, when she fulfilled all but one of her last wishes: getting a dragonfly tattoo. The flying insects were good luck charms for Grace, and she had one hanging from her infusion pole at the hospital, said Dawson, who has seen an abundance of them since Grace’s death.
Curtiss wasn’t surprised to hear that Grace’s last days were spent having fun.
“That, in essence, is Grace: Live life to the fullest until you can’t,” he said.
Life without Grace
Three weeks after Grace died, Linell Pierce was still in shock. Speaking in her cozy living room the last week of July, Pierce said it felt like Grace was just away at camp or was visiting her father.
Pierce still hadn’t sorted through Grace’s things or gone in her daughter’s room. She’s only read a few sympathy cards. The mother who spent all but one night in the hospital with her daughter isn’t sure what life should be like now.
Community members have said they want to remember Grace through awards or scholarships, but both Pierce and Michaela will try another tactic.
“Individual memories are what’s going to keep her memory alive, not necessarily dedicating things to her,” Michaela said. “That has its place and everything, but I don’t think she’s worried people would forget her name; I think she’s worried people would forget who she was.”
So Pierce encourages people to share their stories about Grace. Whether they see a dragonfly or eat a soft pretzel – one of Grace’s favorite foods – Pierce wants to hear about it. She’d already received two such messages. And there’s 17 years’ worth of stories to retell.
Pierce plans to return to teaching this fall, but both she and Michaela know school won’t be the same without Grace.
“I think it will be about her,” Michaela said. “I think this year, she’ll still be here in essence.”