Nearly two years ago, little Zoey Daggett was diagnosed with a devastating, inoperable form of brain tumor called DIPG. Her parents, Casey and Ben, knew from the beginning that she only had months or years to live, and that when it came time to let her go, they would do so in the privacy of their own home.
And so, when Zoey passed away at 5 years old on July 4 — after years of treatment and many prayers — that’s exactly what happened. She passed in the familiar space of her own home and in the loving arms of her mom and dad.
“We wanted her to pass at home,” Casey tells Babble. “We made that decision a long time ago that this was where it needed to be. We had home care nurses who would come every other week, then once she was getting worse it was every week, and the last week it was every day until she passed.”
In those final, difficult hours, one of the nurses who had come to care for Zoey asked Casey and Ben if they would like her to take a photo of them holding and comforting Zoey.
“Susan, our nurse asked if she could take the photo,” Casey shares. “She said some families like to have a photo to remember these moments, and I asked Ben and we both said yes.”
This moving photo — of Casey and Ben embracing Zoey’s small, sweet self as they look at her with a mix of raw pain and love — has come to mean so much to the grieving parents. And now, the photo is going viral because of its honest and loving depiction of the experience of losing a child to cancer.
This isn’t the first time Casey and Ben have shared the most intimate and difficult moments of Zoey’s cancer journey with the world. They run a Facebook page called Zoey’s Fight, where they’ve chronicled Zoey’s treatments, as well as the ups and downs of the past two years.
“I shared every photo, good and bad, to show our reality, because it is what it is,” says Casey, adding that she has a lot of private photos that she didn’t post, but that this last photo of Zoey felt like something important enough to share with the world.
“I knew I would print it and have it forever some day and people would see it in our house, so I thought I wanted to share our emotion with the world because it’s what we’ve done all along,” she says.
Casey adds that the photo was taken around 11:30 in the morning the day that Zoey passed. The nurses had been called back to the Daggetts’ home, because they knew that things were not going well and progressing quickly.
“Her lips and fingers were turning blue,” Casey shares. “Ben was holding her and I was rubbing her legs, we had Disney songs playing in the backgrounds on Pandora and we were just talking to her. Telling her how much we love her, how things will be OK, how we will be ok and how it is OK today to let go to be pain free to see our families who are in heaven. We were both crying and just talking to her.”
Casey and Ben didn’t know it at the time, but this would be the last photo taken of them and Zoey. Zoey died later that day, at 4:17 PM. Casey says that she didn’t realize how meaningful the photo would become in that moment, but that she’s glad she agreed to be photographed, and that she even ended up using the photo at Zoey’s funeral this past week.
“I shared it after her passing when we had the funeral and viewing arrangements, not knowing at all that this would happen,” she explains.
Besides memorializing their daughter’s short, but vibrant life, the Daggetts hope that sharing these real and intimate photos will ultimately help raise awareness of DIPG, an aggressive type of childhood cancer that currently has an extremely low survival rate. Like many childhood cancers, DIPG is severely underfunded, and in need of more research and treatment options.
“The research is starting to get better because more families are donating the tumors,” Casey explains, “but only $500 a year really goes to the NCI from the government and everything else is from private donations which isn’t a lot. It affects small children and takes lives very quickly in a very painful way. There is no name for a parent who has lost a child because of how horrible it truly is.”
Losing a child is something that is hard for most of us to imagine or even think about, but the reality is that cancers like DIPG are affecting far too many children, and something needs to be done so that doctors can work on saving their lives. Until then, what parents of children battling this disease can hope for is the kind of gentle, humane, and loving care that sweet Zoey was given in her final days — and the meaningful memories of their precious children that will last forever.