Lucy’s Legacy

November 21, 2023
4 mins read

Turning lemons into lemonade stands and funding for childhood cancer

Words by Kerry Speckman

Cancer is the leading cause of death by disease in children past infancy in the U.S.

Let that sink in for a minute. Then consider this.

The federal government allocates billions of dollars each year to the National Cancer Institute (NCI) and National Institute of Health (NIH) for cancer research. Among the 2 million Americans who are diagnosed with cancer each year are thousands of children diagnosed with pediatric (or childhood) cancer. And to those children, the U.S. government designates less than 4% of all of its cancer research funding. Even more shocking, not to mention heartbreaking, is the fact that approximately 1 in 285 children in America with be diagnosed with cancer before their 20th birthday.

Jordan and Jessica Donmoyer had no idea about these statistics back in 2020 —until their daughter became one of them.

In February, just before the COVID-19 pandemic hit, Lucy, who was 4 at the time, wasn’t acting like her bubbly self. She also had a lingering fever. After multiple trips to her pediatrician and the ER and lots of tests, Lucy was found to be anemic. By this time, however, she also complained about pain in her back and hip. After more testing, it was revealed Lucy had a large mass in her abdomen, specifically, an aggressive neuroblastoma, a type of cancer that forms in the adrenal glands, neck, chest and spinal cord. By the time it is finally diagnosed, it’s usually already metastasized. For children with high-risk neuroblastoma, like Lucy, the 5-year relative survival rate is around 50%. Devastating news at any age, but for a 4-year-old, it was almost unfathomable.

Taking care of Lucy — and her little sister Charlotte — was obviously the Donmoyers’ priority, but they also wanted to do something to help other families and children with pediatric cancer, who were going through the same devastating experience. The first year after Lucy’s diagnosis Jessica promoted Pediatric Cancer Awareness Month by posting statistics and other information on social media every day in September. The following year the couple knew they were ready to take on a bigger project. 

Inspired by Alex’s Lemonade Stand Foundation for Childhood Cancer, a non-profit that spreads awareness, raises funds for research and supports families affected by childhood cancer,  Jessica suggested setting up their own lemonade stand to benefit childhood cancer research and having family and friends do the same. Jordan did some research, and Lucy’s Lemonade Stand was born. 

“We didn’t really know what to expect,” Jordan said of the first event which included 22 lemonade stands. “But we were ecstatic when the money started rolling in, and [we] ended up raising $22,000. We were blown away.” They donated the money to Fourth and Gold, a Jacksonville-based non-profit that seeks to “find and fund the most promising research that will lead to more humane cures for childhood cancer.” The charity was started in 2020 by Erin Tracy, a pediatric oncology nurse at Wolfson Children’s Hospital (and one of Lucy’s favorite nurses).

“[That year] I had two special kids that I was really close with who were both in remission from leukemia, who died a week apart,” Tracy said. “And that’s when I really sat down and I was like, I can’t do this anymore.” After several weeks, however, she realized she needed to do more.

Finding out the dismal rate at which childhood cancer research is funded was bad enough. But working as a pediatric oncology nurse, she also knew the horrors of what pediatric cancer patients go through. “Any side effect that you can think of, these kids have experienced because the treatment is made for adults. It’s not made for 50-pound little girls,” she said

The reason there’s no specific protocol for children with cancer, she said, isn’t a matter of money but a matter of priorities. “It’s because children aren’t profitable. They’re not in society making money. They’re not holding jobs. If you lose a child, of course the family is affected and the community may be affected, but the money-making world is not affected. The pharmaceutical world is not affected,” she explained. “The National Institute of Health will tell you childhood cancer is rare and that’s why they don’t seek out more drugs, but it’s not rare: 43 kids a day get diagnosed with cancer. That’s a school bus of kids.”

The Donmoyers learned this, too, only making them more determined to raise money to fund pediatric cancer research, which they did big time. Year 2 of Lucy’s Lemonade Stand had 60+ locations across the country, as well as Italy. The results were even more astonishing as the stands, along with sponsorships, raised $92,000. And just before presenting the check to Fourth and Gold, a magical thing happened … another $8,000 came in at the last minute, bringing the total to $100,000, which was the exact amount of the research project the organization was hoping to fund.

Sadly, Lucy wasn’t able to witness the miracle for herself. She passed away _. But Jordan knows she’d be ecstatic. “Lucy was very, very passionate about helping raise money so kids wouldn’t have to go through what she did,” he said. “She would have been amazed at how everything turned out.”

Jessica summed it up best when she wrote in a post on the family’s #LUCYSTRONG Facebook page after Lucy’s passing:

“Life without Lucy is unreal, unfair, and is still unfathomable even though it has continued in the days and weeks that it has been that she has passed. As much as I miss everything about Lucy, I am at peace knowing that she is looking down from Heaven and watching over us. … She leaves behind a legacy that we will continue to uphold and work to keep her spirit alive forever.”

 

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