When Tragedy Becomes Triumph … A Call to Give Back
This month marks two years ago that my life was turned completely upside down in a way I never imagined possible. With one PET scan and oncologist appointment, my husband Taylor and I were facing his untimely death. We were in our mid 30’s with three daughters ages 11, 6 and 6 months. Prior to this day, a tumor had been found in his bladder, biopsy done, results given and now we were seated across from an oncologist to get the results of a PET scan. Describing the feelings that go along with waiting for scan results is nearly impossible. Anyone who has had the misfortune of entering the cancer world can attest to the sheer panic and possibilities which run through your mind during this time. On this day, the worst possibility became a reality for my family.
Results, Treatment Plan & A Second Opinion
The results of the scan were less than ideal. The oncologist informed my husband and I that the cancer had spread throughout his chest and lungs making his disease treatable but not curable. The prognosis given was 2 years to live at most, and the doctor insisted my husband begin the strongest IV chemotherapy possible immediately. Receiving this type of news is indescribable. We were left speechless. We made the drive home and immersed ourselves back into the routines of daily life as a young couple with children; however, we also began the fight for my husband’s life. We made phone calls, researched online, and spoke to everyone we knew who had connections in the cancer world. By the grace of God, we had a pathology review done at Memorial Sloan in New York and we made appointments at MD Anderson. Ultimately, we decided to seek out an opinion from MD Anderson Cancer Center before beginning chemotherapy. This decision was not easy as we went against our local doctor’s orders. This decision would come to be the one that saved my husband’s life.
Misdiagnosis
The story is long and complex, but the gist of it is that my husband had a very rare cancer. He is very much alive today and completely cured! The original diagnosis and prognosis given on that dreaded day were completely incorrect. The type of tumor he had is one that occurs in less than one in a million people making it extremely difficult to diagnosis. The other activity which showed up on the PET scan was not cancer. We would come to know these things over the following several months as we made many trips from Baton Rouge to Houston to get answers at a cancer specialty center. As his caregiver, I spent a number of hours driving and waiting which gave me plenty of time to think. One thought ran through my mind loud and clear on every visit … What about the people with rare disease who do not get the right diagnosis? I knew I had to help those individuals. These events led to my decision to start the nonprofit Garage 10. I remain forever grateful to my amazing friend, Kasey Gary, who agreed to take the ride with me into the nonprofit world.
Garage 10
Garage 10 is the name of the parking garage we used on every trip to MD Anderson. Our mission at Garage 10 is to provide financial gifts to individuals with rare disease who are traveling to receive care. Financial gifts can be used to assist with costs of food, airfare, hotel rooms or gas. These expenses are not covered by health insurance, leaving a huge financial burden on families affected by rare disease. When affected by rare disease, it is imperative to get treatment from an expert on your disease which often means traveling out of state.
Please take time to learn more about our mission and the wonderful things we are doing at garage10br.com. February 28th is Rare Disease Awareness Day, and we are fundraising all month long to assist individuals with rare disease. You may make a tax-deductible donation on our website. If you or someone you know are facing a rare disease, please fill out an application for a financial gift. We would love to help you.
About Ashley
Ashley is originally from Thibodaux, La. She moved to Baton Rouge in 2005 to attend graduate school at LSU where she received a master’s degree in social work. She has been married to her wonderful husband, Taylor, for 15 years and they have 3 daughters Raegan (13), Julia (8) and Sadie (2 going on 20). Ashley worked as a social worker in the medical field for 10 years before taking a break to be a stay at home mom. Life took a very unexpected turn when her husband was diagnosed with cancer in 2019 which fueled her passion for rare disease awareness. She is co-founder of the non-profit Garage 10. Ashley loves family, faith, friends, date nights, coffee creamer, waterskiing and quiet moments amongst the business of life.
