Raelyn Cutberg was just four years old battling a rare form of childhood cancer when she saw snow for the first time. Her disease was aggressive, treatments were brutal and there was scarcely time for her to be a kid. But for just a few hours one warm Texas day, the pains from her sickness melted away when a band of volunteers filled her front yard with 10,000 pounds of snow.
It was all part of an effort by Operation Snowstorm, a group that focuses on brightening the final days of children with terminal cancer by giving them a play day in the snow.
Ed Newby, who owns an air-conditioning business, thought up the idea after meeting Raelyn’s parents at a fundraiser in 2014. After days of trying to figure out how he could do something special for Raelyn he finally found an idea that stuck.
“As an AC company we make it cold inside..lets make it cold outside,” Ed says.
Operation Snowstorm has served more than 40 terminally-ill children since 2014. The children, who are lovingly called “snow warriors,” are from all parts of Houston. The non-profit gets referrals from hospitals, children’s hospice groups or social media and within days mobilizes a team to bring snow to each child’s home. An ice vendor trucks in 10,000 pounds of ice to the child’s location. Ed then uses specialized farm equipment to shave the ice into snow and blasts it in thick layers across a front yard or parking lot. Volunteers bring snow shovels, snowball makers, winter gloves and buckets for kids to make snowmen. Ed’s own children serve snow cones. A professional photographer documents the entire day and gifts the photos to the children and their families.
“You can’t make them feel any better,” Ed says. “You can’t make them well. So you come in at the end of life and you make the effort to make it just a little bit better than what it is.”
The days offer a fresh relief to families whose lives are consumed with doctor’s visits and cancer treatments. Most kids are apprehensive at first. They’re unsure about the snow, weak from rounds of chemotherapy. Some are able to move about while others are in wheelchairs or need support to sit up. After a bit of coaxing, they’re often tossing around snowballs and smiling.
Ed remembers Raelyn giggling and smiling for the first time in weeks. She ate snow cones after days of eating nothing. Ed pulled her around on top of a trash can lid he’d fashioned into a makeshift snow sled.
“There’s no doctors. No needles. Just kids being kids,” he says.
Raelyn’s parents later made a special photo book with pictures of her snow day. They carried it with them to the rest of her treatments as a reminder of her happiest final moments.
For most families the snow day offers a last chance to be together and make a happy memory before a child dies of cancer.
“You get to have a day where the family is there and you’re not worried about cancer. You’re not worried about treatment,” says Barry Heslop, a parent whose son, Creighton, received a snow day just days before passing away. Barry - who has since been diagnosed with cancer himself - is now a board member for Operation Snowstorm. He helps out on snow days and often shares his story with other parents who have children with cancer.
For Ed, the work is just as personal. He attends the funerals of snow warriors who’ve passed away and keeps their photos hung around his home. After each snow day he saves a snow shovel marked with the name of the snow warrior. He has a collection of more than 40 in his garage as a reminder of their lives. He hopes one day to grow the group and offer more snow days to kids in other cities.
“If you want a better world to live in you have to create it,” Ed says. “You have to make it the best place that it can be.”
