WEST DES MOINES, Iowa –To say Lucy and Jake Sandeen are proud of their daughter Elayna would be an understatement. "Elayna was pure joy," said her dad Jake.
Her mom added, "She was also the happiest baby and kid we knew until she was five and she had stomach pain and we took her to the ER."
Doctors found a Wilms tumor in her kidney. She had 10 months of chemotherapy, radiation, and surgeries.
"We celebrated remission. We enjoyed remission for a little while. And then we were devastated to find out that even though her kind of Wilms tumor we originally thought had a 94% success rate for survival that we were in the unlucky group that relapsed," said Lucy Sandeen.
It was even harder to fight the cancer the second time around. But, Team Elayna found a distraction through fluttering.
"Fluttering is a super fun way to raise awareness about pediatric cancer research and to fundraise for Unravel Pediatric Cancer," said Lucy.
Fluttering takes place every September during Childhood Cancer Awareness month, and it was something Elayna looked forward to.
She and her parents would sneak onto someone’s lawn to leave dragonflies, an Unravel Pediatric Cancer sign, and an envelope on the doorstep. Inside the envelope is information and a request to donate to Unravel Pediatric Cancer, which funds research. If they donate, they get to pick the next home to be fluttered.
In a video from 2015, Elayna said, "They're helping us raise money to help us fund research to a cure and someday there will be a cure."
"She believed wholly with her whole hear that doctors and scientists were working around the clock, according to her, to find better treatments and a cure for childhood cancer,” said her mom.
“And she believed it would happen in time for her," added Lucy.
Elayna died August 22, 2018.
This month, her parents continue to flutter. They go to a new house every day, carrying Elayna's bear Buttercup in their arms and her memory in their hearts.
"It can happen to anybody and we truly need more funding for research. There are scientists and doctors that are waiting that are ready with information that want to do trials. And, it's too late for Elayna, but someone else's little soulmate can be saved," said Lucy.
The Sandeen’s goal is to raise at least $3,000 for Unravel Pediatric Cancer. You can find Elayna’s fluttering fundraising page on Unravel Pediatric Cancer’s website.