Lily Early, 14, Leukemia
Responses provided by both Lily and her mom, Tracey Early
How would you explain leukemia to a child?
Leukemia is a blood cancer. It is the most common childhood cancer. Shortly after Lily's third birthday, she complained of knee pain and spiked a fever. It seemed like a routine toddler virus, but a week later, our world turned upside down when our vibrant daughter was diagnosed with cancer and faced 26 months of chemotherapy. Though terrified, we were so grateful to have a path, however challenging, to save her... and we knew she would fight to get back to her bright world and friends she loved. She was quickly nicknamed hurricane Lily at the clinic!
What do you want the world to know about leukemia?
I want the world to know that even if it seems scary, leukemia is beatable. One of the most painful parts of Lily's Leukemia treatment was the looming long term isolation from her beloved friends and many of the simple joys of childhood. Pediatric cancer patients are unable to participate in regular childhood activities because their immune systems are compromised as a result of treatment. Such immunodeficiency often renders these children unable to have close contact with other children and/or exposure to many public settings, such as schools, playgrounds, etc. We were so grateful to be able to facilitate normalized day-to-day childhood experiences for Lily in our home through the help of our amazing friends and support network. We were able to make sure she had lifelines and moments of joy to look forward to outside of the hospital and clinic visits. Her experiences dancing, singing, painting and connecting with Teachers and Mentors were infusions of positive energy that fueled her for the grueling fight she had to win. They also gave her opportunities to be creative, intellectually stimulated and socially engaged. The impact of these everyday moments was so meaningful, we have created a nonprofit called Riprap Friends to provide these experiences for other pediatric cancer patients. The name “Riprap Friends'' comes from the word for a stone wall used to armor shorelines against water erosion. Riprap's work provides a metaphorical armor for pediatric cancer patients and their families against some of the often overlooked erosive characteristics of that disease: social, creative, and emotional isolation that can be a severe impediment to full recovery. We understand that a child’s well being depends on a variety of important factors, and among those factors is the child’s ability to be creative, intellectually stimulated, socially engaged, to have the opportunity to make meaningful choices in his or her day-to-day life, and most importantly, to have the support of family and friends during their medical treatment. Riprap intends to facilitate all of these things in the name of bettering the overall health of childhood cancer patients.
What does it feel like to live with leukemia?
I don't remember much but I feel really grateful to have survived and still be here today.
What brings you joy?
A lot of things bring me joy. Some of those things are iced coffee, sports, surfing, shopping, reading and most importantly my friends and family.
I think Lily feels empowered by her triumph over leukemia. She has grown into a resilient, determined and deeply empathetic young woman. She has faced extraordinary challenges as a result of her treatment (in addition to the actual illness and grueling treatment itself), but she takes it in stride with an optimistic perspective and inspiring strength.