We began noticing tiny things at first that something was not right with our then 3-year-old daughter. Ali appeared to have trouble focusing her eyes, her balance was off, and she became clumsy. After a couple incidents of falling and hurting herself, we took her to Teche Regional Medical Center in our hometown of Morgan City, Louisiana. While there, a physician examined Ali and thought maybe this was something she would grow out of. But, on the side of cautiousness, we were referred to Children’s Hospital in New Orleans, about one hour away. While there, the doctors ordered an MRI of Ali’s brain. This was December 27, 2007. Almost immediately, a physician was at our bedside with devastating news: Ali was diagnosed with pontine glioma, a tumor in the brain stem. The physician suggested radiation, which would buy time, but not a cure. We were told to go to Disney World and to do all the other things Ali dreamed of doing, because there is no cure for pontine glioma. She began radiation about a week after diagnosis. Our family stayed in New Orleans at the Hope Lodge, a home-away-from-home sponsored by the American Cancer Society. Daily radiation treatments and chemotherapy continued for 30 days.
We were then discharged home to live out Ali’s dreams of a Disney World trip, which we did in the spring of 2008. We also took her to the Global Wildlife Center in Folsum, Louisiana. We took her to the New Orleans Zoo and to the Audobon Aquarium. Ali loved animals, especially giraffes and alligators! To see Ali during this time, you would never know that she had cancer. She appeared healthy and beautiful and didn’t act as if she ever felt bad!
We took Ali to the Baton Rouge Zoo on August 23, 2008. She appeared to have trouble focusing her eyes to see the animals. Hurricane Gustav roared through Louisiana on September 1, 2008. By the next weekend, Ali’s symptoms had worsened. After a phone call to Dr. Singleton, Ali neurologist in New Orleans, we were ordered to bring Ali to Children’s Hospital in New Orleans for another MRI. On September 8, we were given the devastating news that Ali’s tumor had grown an d was now larger than its’ size at diagnosis. We were also told that there was nothing else that could be done to fight the monster in our little girl’s brain. One week later, Ali was no longer able to walk or get around on her own. She maintained her fighting spirit and continued fighting to communicate even after she became unable to speak. Hospice was brought in to provide support and medical management of Ali’s pain.
Ali Rose Aucoin earned her well-deserved angel wings on November 2, 2008 with her mommy, daddy, and family at her side.
Written by Jarrod Aucoin, Ali’s father.
Read the story ‘Making a Difference by Funding Diffuse Intrinsic Pontine Glioma, an Understudied Tumor‘.