The parents said goodbye to their daughter. Seconds later, they realized something shocking. On July 4, Casey and Ben Daggett of Fairport, New York, took an emotional photo of their five year old daughter, Zoe, fast asleep in the their laps. They didn’t know then that it would be the last photo they’d ever take of their little girl. We were noticing that her fingers were turning bluer and she was getting more pale, Casey tells People of her daughter.
We had the nurses come and visit in the morning and we were just sitting with her. They knew that she was getting closer to death, so we sat there with her and held on to her. We all just sat with her and waited. The Daggers have shared updates on Zoe’s health via their Zoe’s Fight Facebook page. Casey says she was committed to sharing the good photos and the bad photos and that she wanted to share the peaceful photo to give others hope.
A five year old girl full of life and love who just graduated from kindergarten, died of brain cancer in Fairport, New York, on Wednesday. Zoe Catherine Daggett died at 417 PM on the 4 July 1, day shy of two years since she first had symptoms of a brain tumor. We’ve had two years to prepare for this, but it’s never enough, said Zoe’s mom, Casey Daggett. Zoe spent her last day held by her parents, Cassie 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. Zoe 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 conditions 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, Zoe never stopped moving. She loved going to her grandparents’dairy farm, fishing, feeding cows and going to school at Brooks Hill Elementary School in Fairport Central School District. Zoe was a tornado, a runner and a snuggler who loved everyone, Tasty 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 sound waves of Zoe’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 dead, silent, and she just starts singing Twinkle, Twinkle, Little Star in the middle of a giant packed Church.
That was Zoe. Her diagnosis came in July 2016, she’d fallen at a park and limp for a few days, but she had no broken bones and appeared okay. About a week later, she lost mobility in her hand, prompting a trip to the emergency room. That’s when doctors found the tumor. Zoe had a diffuse intrinsic pontine glioma tumor, a rare brain cancer that mostly impacts children ages four to ten.
That was a rough phone call, Ben said. Zoe 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 less than a 1% 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 June’s Research Hospital website.
Dipg starts with a brain stem and has a low survival rate. From then on, Zoe’s Journal was chronicled on Caring Bridge and Facebook pages. Her story was followed by over 6000 people on the Zoe’s Fight Facebook page updating loved ones individual about Zoe’s journey was overwhelming at first, so Casey set up the pages, eventually writing updates about both the bad and 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. Zoe Daggett dies of cancer at the age five.
Zoe met many princesses before she died in July of 2018. The day of Zoe’s death on Wednesday was captured, too, in the posted Photo Zoe 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’ve considered changing Zoe’s Fight page to Zoe’s Light, a place to give back and do what Zoe would do.
The only thing that makes sense right now, Casey said, is to help others, even when we can’t help ourselves. Zoe had a bucket list. She was a cheerleader in Fairport, attended camps, met all the Disney princesses she could and rode into Batmobile. Her parents said she loved traveling and visited Amsterdam, Germany, France, London, California, Florida, Washington, DC 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 Zoe, Casey said. We made sure that she saw everything she wanted to see because she wasn’t going to be able to do it when she got older. In her last days at her Brooksville graduation, Zoe said, When I grow up, I want to be a makeup girl. Zoe was well supported by her school’s community, Casey said. Teachers would give her gifts, and they attended the Beat Brain Cancer Five K Run 1 mile walk in early June, where the race donated all proceeds to Zoe.
Teachers came to visit her during her last days. Our Fairport family is deeply saddened by the loss of Zoe. Our thoughts and prayers go out to her family during this extremely difficult time, said a statement from the Fairport Central School District. Fighting for more time, they took Zoe’s fight to Germany. The family looked for medical options in New York City, London and in Germany.
Doctors in Rochester told them they weren’t options here for treatment trials, but they would help the Daggers research other treatments around the world that might work or improve Zoe’s life, Casey said. The Daggettz found the IOZK clinic and moved to Cologne, Germany, in October 2016 for immunotherapy treatment under Dr. Stefan van Ghoul. The clinic works to focus on how the immune system can be active 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. Zoe was 100% symptom free, off steroids and back to being a normal four year old, Casey said. We believe it slowed down, helped her to be able to stay who she was. Eventually, the therapy in Germany didn’t work anymore, and the family moved back to Fairport, where Zoe went to preschool. While in Fairport, she was looked after by doctors at Strong Memorial Hospital and Gala Sana Children’s Hospital, which the family praised.
They appreciated the straightforward approach and honesty it gave them. Both Casey and Bendigo tattooed the voice pattern of their daughter Zoe, saying, I love you and the line, not today. Five year old Zoe died of a rare form of cancer. You have a boo boo in your head, Ben would tell her. But Zoe 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 3 hours, Ben said. We made everything into a game so it was less scary, he said. If Zoe had to get a shot, it’s the pokey 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. 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’d be upset she missed the fun, Ben said. If she had a side effect of cancer that she didn’t like, Ben would explain.
It’s not your fault, and then she’d be okay 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. Zoe’s Ashes will travel the world, Casey said they plan to take them across the globe, including Paris. Calling hours will be twelve to 04:00 p.m.
At Richard H. Keenan Funeral Home at Pittsburgh Palmyra Road in Parrington. 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. Zoe 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. People with a brain tumor tend to have blurred double or peripheral vision because of the tumor pushing down on the nerves. Brain tumor surgery takes a lot of people’s bodies as well.
Without it, a lot of people end up having speech difficulties and even worse seizures. These are the discomforts that become a constant part of their lives. To minimize the cons, brain tumor surgery and other forms of treatment need to be pursued while there’s still time. Brain tumors are the most common solid tumors in children. Approximately 4000 children and adolescents in the US are diagnosed with primary brain tumors each year.