By Alex Taylor
Hi! My name is Alex, and I am a single mom to my almost 4-year-old daughter, Tinslee. We discovered Tinslee has Fanconi anemia (FA) the same day we first learned about the condition. At her two-year check-up, her pediatrician recommended blood work because Tinslee hadn’t been growing as expected. This led to a referral to the Hematology Oncology department at Children’s Mercy Kansas City. After months of testing, we received the diagnosis.
Initially, we had no warning signs apart from her being very petite. The diagnosis brought an overwhelming mix of shock, disbelief, and heartbreak. I made the mistake of Googling FA, and what I found shattered me. I spent the first two days in tears, questioning why this was happening to my daughter. I wondered why children get sick and turned to prayer, hoping to find solace in a bigger picture. Although I had never been very religious, I needed something to hold onto.
It took me weeks to come to terms with the fact that there were no easy answers. I couldn’t change the past or the diagnosis, so I focused on educating myself and becoming Tinslee’s biggest advocate. We underwent all the necessary tests, scans, and procedures, and spent a year going in for lab work and check-ups.
One day, I was added to the Fanconi Cancer Foundation (FCF) support group on Facebook. Finally, I had a community of people who understood our journey. They encouraged me to seek a second opinion. Although we had been receiving care at Children’s Mercy Kansas City, they didn’t have an FA specialist. The closest specialist was in Cincinnati, so we drove 10 hours straight for Tinslee’s appointment. We left feeling encouraged and empowered.
Tinslee is now preparing for a bone marrow transplant in Cincinnati. We don’t know when it will happen, but we are confident she will receive the best care possible. While I still have moments of random tears or anger at the world for the hand my daughter was dealt, I find strength in the support of our family, friends, and community. Together, we will make it through.
