My daughter Lucy was 3 years old when she was diagnosed with High Risk Neuroblastoma in 2009. She was a perfectly normal little girl, until that day. She endured multiple rounds of powerful cocktails of chemotherapy, a treatment that while hoping to give her life was also poisoning her. As a nurse, I would look at the IV bags as they slowly dripped and then flowed into my daughter’s body.
It was terrifying but there were no other options since decades-old chemo is still the standard of treatment for children battling cancer, the number one disease killer of children in the U.S. Lucy was one of more than 13,000 children diagnosed every year and was now part of the ranks of tens of thousands of children who are actively battling cancer on any given day in the U.S. To some she was a statistic, but to me she was and is everything. I’m not sure why, then, so little money and awareness is directed towards childhood cancer.
Lucy’s third round of chemo was vicious. It left her without the energy to hold her head up for more than a few minutes at a time. For more than 10 days after that week-long round of chemo ended, she was listless and just a shadow of her former self. It felt like a lifetime as I willed her back to the land of the living. It is a gut wrenching, out-of-body experience to watch your once full-of-life 3-year-old become a shell of her former self. Pale skin, sunken eyes, bald head, and the scars from incisions from surgeries and bone marrow aspirations… I shed a thousand tears when she wasn’t looking.
In the fog of treatment, I remember going to a grocery store during this time and noticing all the children who were out and about. They were riding their bikes, running, laughing and doing all the things that kids should be doing. All the things that Lucy and 13,000 other children should be doing. Kids should not be sitting in hospital rooms with poison pumping through their veins. Kids should not die from a disease that could be cured if we only addressed the problem by funding more research. Something like cancer doesn’t get better on its own. It doesn’t magically disappear. You have to work at it. Together.
After Lucy finished her 2.5 years of treatment, and made it through her first harrowing year of scans without cancer being detected in her body, I decided I needed to do something to try and make a difference. I wanted to raise awareness about how little money is directed towards pediatric cancer from the government and from drug companies. I wanted people to know that the disease classified as an “orphan disease” actually had faces and families behind it like Lucy’s. I wanted to raise money to help fund research that would hopefully save the children I knew who were still fighting this ugly and ruthless disease. I wanted to make all the angels proud knowing that they had inspired me and so many others into action. I wanted a cure.
I talked with fellow cancer parents about starting an organization called Lucy’s Light to raise awareness and funds for pediatric cancer. Many of them had been involved in different organizations already and had some good information for me. I received Gretchen Witt’s name from my friend Robin who I had met while our girls were in treatment together. She told me that Gretchen had started Cookies for Kids’ Cancer and would be willing to offer her guidance. I then talked with another friend, Carmen, who I met during our kids’ treatment. She told me something that made everything kind of click in my brain. She said that Gretchen had once said to her that we need to band together.
Instead of having hundreds of different pediatric cancer foundations, we need to group the energy to make the biggest impact. And this totally made sense to me. The voices needed to come together so that they could be heard. I checked out the Cookies for Kids’ Cancer website and loved the fact that it was not about one cancer or one child. I loved hearing from Gretchen that they make every dollar count. It didn’t take long for me to decide that Lucy’s Light would team up with Cookies and donate all money raised to this amazing organization.
My first event was a Dodge Ball tournament. It was a lot of work, but nothing compared to the treatment Lucy had endured. Lucy and her light inspired me and kept me strong. And with her light guiding the way, we had an incredible tournament that far exceeded my expectations. We’re already planning the next tournament and as equally important, we have shined a light on the needs surrounding this awful disease that preys on children in our community.
When our children are born, we worry about so many things to make sure they are safe. Cancer is not something any parent should have to worry about or any child have to suffer through.
Hillary Waldeisen, Mom of Lucy, now 7, and showing no evidence of cancer
Founder of Lucy’s Light and Supporter of Cookies for Kids’ Cancer