Layla was diagnosed with metastatic Ewing’s Sarcoma on February 4, 2016, after several months of unexplained abdominal pain and struggling to keep on weight. Layla had been tested for a host of diseases including Type 1 diabetes and Celiac Disease. By January, Layla was getting severe stomach and back pain that would wake her up in the middle of the night and was only relieved by heat. The night before a scheduled ultrasound, while in the tub trying to relieve her pain, her mother noticed a lump on her back. At the ultrasound the following morning, images of the lump were taken. Less than an hour later, the nightmare began for Layla’s entire family. Her pediatrician called and said that Layla was being admitted immediately to AI DuPont Children’s Hospital’s oncology floor to have a CT scan and an MRI. By noon the next day, it was confirmed that Layla had a large cancerous tumor on her 9th, 10th, and 11th ribs as well as twelve spots in her lungs. They weren’t sure yet, but the oncologist was fairly certain that it was Ewing’s Sarcoma, a very rare and very aggressive form of bone cancer. Her family was told not to look up any information about it until they knew for sure. When it was confirmed, and Layla was officially diagnosed, she was given a 30% chance of surviving five years. There is no cure for Ewing’s Sarcoma. There is a standard treatment that has a good response rate, but Ewing’s Sarcoma almost always comes back, and for relapse there is no protocol.
Layla was accepted into a clinical trial at the Children’s Hospital of Philadelphia that included 14 rounds of intense chemotherapy, a resection surgery to remove the remaining tumor and affected ribs, and eight days of whole lung radiation. She is still currently in the maintenance phase, which consists of an infusion of an experimental drug every three weeks. She will be completely finished with treatment in May of 2017, but as of her latest scans she has no signs of cancer! She will continue to have frequent CT scans and MRI’s for the rest of her life. The chemotherapy that Layla and so many other children have to endure causes many late effects. Layla is waiting on a neurological evaluation for short term memory problems as well as learning difficulties. She also now suffers from neuropathy in her legs and feet, which can cause pain and trouble walking.
Through all that Layla has endured, however, she has remained the shining light in her family. Her positivity and smile has helped carry her family through this difficult time. While facing the unimaginable, Layla began to use the mantra “No biggie!”, and shared this with her friends in the oncology ward. She hopes to inspire other kids to be brave and keep smiling.
Mascots for a Cure means so much to our family. Not only do they fight tirelessly to raise awareness for Childhood Cancer, they bring so much joy to children and their families all around the country. They give so much hope and to the Childhood Cancer community, and I have no doubt that they will continue to make a huge impact in the fight against Childhood Cancer.