A 5-year-old girl, full of life and love who just graduated from kindergarten, died of brain cancer in Fairport, N.Y. on Wednesday.
Zoey Catherine Daggett died at 4:17 p.m. on the Fourth of July, one day shy of two years since she first had symptoms of her brain tumor.
“We’ve had two years to prepare for this but it’s never — it’s never enough,” said Zoey’s mom, Caseby Daggett.
Zoey spent her last day held by her parents Casey and Ben Daggett, listening to stories and music. They put on one of her favorite movies, Harry Potter and the Prisoner of Azkaban.
“Midway through the movie that was it,” Ben said.
Zoey had been declining in health each day since June 27. "It was probably a month ago we kind of figured out that the radiation wasn't working anymore," Ben said. Her condition worsened and her parents opened up their house to community members, family and friends on June 30 about 50 people came to visit her in her last days.
”She was a ball of fun,” Casey said.
Before her diagnosis, Zoey never stopped moving. She loved going to her grandparents' dairy farm, fishing, feeding cows and going to school at Brooks Hill Elementary School in the Fairport Central School District. Zoey was a tornado, a runner and a snuggler who loved everyone, Casey said. She liked superheroes, unicorns, princesses and going to breweries with her parents. She wanted to go everywhere with them.
She's always with them. They carry soundwaves of Zoey's voice tattooed on their arms. The waves say "I love you" and "not today," a line from the show Game of Thrones. They explained: "What do you say to the god of death? You say, 'Not today.'"
“She was just this tiny little person that brought light to every single room and every single occasion," Casey said. "I remember, we were at Christmas Eve Mass once, it’s dead silent and she just starts singing "Twinkle, Twinkle, Little Star" in the middle of a giant, packed church." That was Zoey.
Her diagnosis came in July 2016. She had fallen at a park and limped for a few days, but she had no broken bones and appeared OK. About a week later she lost mobility in her hand, prompting a trip to the emergency room. That’s when doctors found the tumor.
Zoey had a diffuse intrinsic pontine glioma (DIPG) tumor, a rare brain cancer that mostly impacts children ages 4 to 10. "That was a rough phone call," Ben said.
Zoey lived beyond original expectations.
“I didn't know about this until we were diagnosed, and then you realize there's other kids in our area that have it,” Casey said. “DIPG is not curable at all and has a less than 1 percent chance of survival.”
The tumor grows rapidly and can take away abilities such as walking, talking, swallowing, eyesight and eventually the ability to breathe.
According to information on St. Jude's Research Hospital's website, DIPG starts in the brain stem and has a low survival rate.
Updating loved ones individually about Zoey’s journey was overwhelming at first, so Casey set up the pages. Eventually writing updates about both the bad and the good became cathartic.
“It was helpful and therapeutic for me to write all of it out there and let everyone know what we’re going through," Casey said.
The day of Zoey's death on Wednesday was captured, too.
In the posted photo, Zoey is in her father's lap and held by her mom.
“Right now I don't need the photo,” Ben said. They have her last days memorized, though one day they might need it.
They're considering changing "Zoeys fight" page to "Zoeys light" a place to give back and do what Zoey would do. The only thing that makes sense right now, Casey said, is to “help others even when we can't help ourselves.”
In her short life, Zoey surely lived
Zoey had a bucket list. She was a cheerleader in Fairport, attended camps, met all the Disney princesses she could and rode in a Batmobile, her parents said.
She loved traveling and visited Amsterdam; Germany; France; London; California; Florida; Washington, D.C.; and New York City. She saw Paris on Thanksgiving while the family lived overseas for treatments and she always wanted to go back.
“We traveled the world for Zo," Casey said. “We made sure that she saw everything that she wanted to see, because she wasn't going to be able to when she got older.”
In her last days, at her Brooks Hill graduation, Zoey said "when I grow up I want to be a makeup girl." Zoey was well supported by her school's community, Casey said. Teachers would give her gifts and they attended the Beat Brain Cancer 5K run one-mile walk in early June, where the race donated all proceeds to Zoey. Teachers came to visit her during her last days.
"Our Fairport family is deeply saddened by the loss of Zoey. Our thoughts and prayers go out to her family during this extremely difficult time," said a statement from the Fairport Central School District.
Fairport to Germany
Fighting for more time, they took Zoey’s fight to Germany.The family looked for medical options in New York City, London and in Germany.
Doctors in Rochester told them there weren't options here for treatment trials but they would help the Daggetts research other treatments around the world that might work or improve Zoey's life, Casey said.
The Daggetts found the IOZK Clinic and moved to Cologne, Germany in October 2016 for immunotherapy treatment under Dr. Stefaan Van Gool. The clinic works to focus on how the immune system can be activated against cancer.
“If we didn't go to Germany there was nothing else available for us in the States,” Casey said.
While they were there only a few months, all three of them loved Germany.
“Zoey was 100 percent symptom-free, off steroids and back to being a normal 4-year-old," Casey said. “We believe it slowed it down ... helped her be able to stay who she was.”
Eventually, the therapy in Germany didn’t work anymore and the family moved back to Fairport, where Zoey went to preschool.
While in Fairport she was looked after by doctors at Strong Memorial Hospital and Golisano Children's Hospital, which the family praised. They appreciated the straightforward approach and honesty it gave them.
Zoey didn’t care about the brain tumor
“You have a boo-boo in your head,” Ben would tell her, but Zoey didn't care.
She would run down the halls in the hospitals and enjoyed getting popsicles from the hospital staff.
In Rochester, they were in the hospital "every other Thursday for about two to three hours," Ben said. "We made everything into a game so it was less scary," he said. If Zoey had to get a shot it's the "pokie one" or if she was sedated "it was the silly juice because it made her feel silly."
“She loved getting MRIs and getting sedated," Casey said. "The kid was a nut, she’s like 'I get silly juice today,’" and then would yell "yes" in excitement.
If she was too sedated to remember a hospital visit, she would be upset she missed the fun, Ben said. If she had a side effect of cancer that she didn't like, Ben said he would explain "it's not your fault," and then she'd be OK with it, he said.
Her little body was tough. She had gone through more rounds of radiation than many had heard of — four complete rounds. Most kids don't get through two or three, her parents said. Doing a fifth round of radiation would have been like "adding salt to the ocean," Ben said, as the tumor wasn't going to stop.
She loved life regardless of her "brain boo-boo."
Zoey’s ashes will travel the world. Casey said they plan to take them across the globe, including Paris.
'Black is not my color,' Zoey would say
Calling hours will be at 12 to 4 p.m. Sunday at Richard H. Keenan Funeral home on Pittsford Palmyra road in Perinton.
The funeral will be at 11:30 a.m. Monday at St. John of Rochester.
Attendees are asked to not wear black and instead dress in bright colors. Zoey didn't like wearing black. To support the family, in lieu of flowers they wish that you give back to the community and make someone else smile.
A GoFundMe that has been operating for more than 20 months has raised almost $37,000 for the family as they tackle costly medical bills.
Follow Meghan Finnerty on Twitter: @Finnerty_Meghan