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Lilly Ibbotson

  • Neuroblastoma

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Lilly is a 4-year-old firecracker. She loves learning ABCs and counting. She is obsessed with colors and shapes too! Her favorite dinner is chicken. As an infant, Lilly was always sick, and was often misdiagnosed with a virus or asthma. One day her mother, Nicole, had a gut feeling that told her something wasn’t right. She rushed Lilly to the local ER when she was having difficulty breathing. The X-ray showed a large mass occupying 3/4 of her chest, and so she was sent to Children's Hospital of Philadelphia (CHOP) where she was diagnosed with neuroblastoma at a year and a half.

Unsuccessful removal surgery was attempted, and Lilly was so weak that she fell into a medically-induced coma for two weeks. When she woke, she had lost half her body weight, and had to learn to walk and eat again with physical and occupational therapies. A port had been placed but the tumor was dangerously close to her lungs and wrapped around vital parts. Emergency chemo started and continued throughout that summer. Lilly lost her hair, but never her smile.

Thankfully, chemo successfully shrunk the tumor about 50% and Lilly had a chance to recover for a few months. Lilly’s scans were stable during that time, but a growth was detected and Lilly suffered a relapse where surgery was required. Lilly’s lungs collapsed during that procedure and unfortunately all of the tumor could not be reached because it would have been a spinal surgery. Again, Lilly enjoyed some time off from the hospital, but most recently, Lilly’s doctors are concerned with an abnormality in her scans. Lilly will have to have another surgery to remove lumps in her back. To date, Lilly has endured countless pokes, monthly anesthesia, injections, transfusions, chemo and severe anxiety. But despite all she's endured, she remains strong.

Lilly’s mother Nicole has plans for Lilly to enjoy the summer after she crushes another bump in the road. She hopes that Lilly's scans will say no evidence of disease in the future, and that, years from now, she can tell Lilly how brave she was while celebrating survivor-ship.

Lilly is a tiny little girl who overcame and went through more trauma than most adults. She is a superhero!

Nicole wants others who may have recently received a cancer diagnosis to know it's very tough and the worst thing is you feel helpless, but your child needs you to be strong and they will be stronger. Smile! 

Quote from the family: “Lilly Strong. Fight like a kid!”

Information provided by Nicole Ibbotson, Lilly’s mother
Updated June 2019

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