WEST DES MOINES, Iowa –It's been a little more than a year since a West Des Moines couple lost their only child to cancer. Now, they're trying to make sure other families don't feel the heartbreaking pain.
Elayna Sandeen loved princesses when she was little. "She was all bows and dresses,” said Mom Lucy Sandeen.
Then it was Pokemon and Harry Potter. Lucy said, “Elayna was amazing. She was beautiful, smart, and funny. She was our little soulmate.”
She was healthy too, until one day she wasn't. “We thought a UTI or appendicitis would be the worst thing,” said Dad Jake Sandeen.
“I remember telling him, be prepared because they may need to put in an IV. It will be really traumatic for her,” added Lucy. “And then to find out what was coming was so much worse."
Elayna was diagnosed with cancer, she had a Wilms tumor, when she was five. Her prognosis looked good. Jake said, “I remember the doctor telling me, you have every reason to believe that you`re going to walk her down the wedding aisle someday. I took a lot of comfort in that.”
They enjoyed nine months of remission, but the cancer returned. “The sad part is, once we relapsed, our treatment path wasn`t clear anymore. There was no obvious protocol to follow. That`s directly because of a lack of funding for pediatric cancer research,” said Lucy.
That's why the family started fluttering. It was something Elayna enjoyed doing to raise money for Unravel Pediatric Cancer. Lucy explained the process saying, “They move a set of dragonflies and stakes from house to house. So, you start with one house and they are given information in an envelope, and if they choose to make a donation to Unravel, they choose the next house that the dragonflies will flutter to.”
In a video, Elayna explained, "To help raise money to help scientists fund research to a cure and someday there will be a cure!"
Elayna died in August of 2018 at the age of nine. We weren`t parents of a child with cancer, until the moment that she did, obviously, but I mean, we were a very happy, normal family. She was so healthy. And, it can just happen to any child, and that is something we didn`t really, completely understand,” said Lucy.
This April, the family started an Iowa chapter of Unravel in Elayna’s memory. More than thirty families are fluttering in the area, raising money for scientists to find a cure. Lucy said, “We miss Elayna so much. She was our everything, and so we just to keep going in her memory now and in honor of all the other kids we know who are fighting and still have a chance at beating this.”
The second annual Childhood Cancer Awareness and Fundraiser Walk to benefit Unravel Iowa is Sunday, September 29th from 4 to 6 p.m. It's at Banner Lakes at Summerset State Park in Carlisle. There will be a family friendly walk, mini golf, face painting, henna art, and superheroes. The event is a free-will donation.
The first Unravel Iowa Gala will take place in April at the venue Bash in downtown Des Moines.