In September of 2009, sweet Lila was diagnosed with inoperable brain cancer at the age of 18 months. The doctors believe it is likely that it developed in utero. It was diagnosed as a multi-focal, Grade 2 astrocytoma.
Shortly after her diagnosis, Lila had a craniotomy to biopsy the tumor. She began the first of 10 rounds of very intense chemotherapy treatments. Lila had chemo for three days in a row every four weeks for eight hours. This treatment went on for a year.
We were fortunate because Lila’s cancer responded to treatment. Her treatment regimen provided results and stability during the first challenging year. When Lila takes a break from treatment, her brain cancer typically responds by growing and changing which always forces us to look at another treatment option.
Since her diagnosis, Lila has been on six different chemo regimens. Regimens have varied in the way they are administered (oral or infusion), type (traditional or trial), side effects and duration. In her six-year battle, Lila has had only two short 3-month breaks from treatment. That is 66 months of chemotherapy. We are grateful for every last minute of these 6 years.
We have been fortunate to see first hand how ground-breaking research in the pediatric brain cancer field gives survivors time and hope.
Lila has been on a trial drug for the past 18 months. We have been the benefactors of these innovative new treatments and therapies that LBF seeks to support. Her experiences push us harder and fuel our fire to continue the battle.
Throughout it all, Lila continues to grow, develop and thrive. She is amazing to watch. Children and adults are drawn to her. She has so many friends and followers everywhere she goes.
This fall, Lila will enter first grade. She loves school. She loves socializing and learning. She does, however, face learning and physical struggles that are undoubtedly due to cancer and the chemotherapies she has endured. These chemotherapies that have shrunk and stabilized her cancer have also harmed her. Pediatric cancer treatments have many unknown and long-term side effects. That is why we are striving to do better – we have to be able to cure cancer without poisoning the bodies of our children. This is LBF’s purpose.
An inoperable brain tumor like Lila’s means a life-long journey. Our hope is that the cancer cells in her brain become inactive. This is what we pray for everyday. At this time, the only measure we have to rely on to tell us if the cancer is active is an MRI, which in Lila’s case is not a completely accurate one. There is so much innovative research in the pipeline and so much more waiting to be funded. This is why we started The Lilabean Foundation for Pediatric Brain Cancer Research.
We would like to express our deepest gratitude for the support and prayers over the years. Please continue to pray for Lila and all of the children who are faced with this devastating disease and please continue to support LBF. We know it takes an army. Lila’s Army!