I was diagnosed with B-cell acute lymphoblastic leukemia (B-cell ALL) in October 2020 at the age of 38. It was a shocking diagnosis. I started feeling bad in September with extreme fatigue and some body aches, nothing terribly alarming. I'm a busy wife and mom of two young kids (ages 2 and 8 at the time of diagnosis) with a full-time job and two new puppies. I figured I was just worn out from everything.
I had routine bloodwork scheduled for my annual physical. When my primary care doctor received the results, he called and asked me to go to the emergency room. So, if you learn anything from my story, routine physicals and labs are important! I am so grateful he took the results seriously and strongly urged me to go. After four days of testing, they confirmed the diagnosis and transferred me to Moffitt Cancer Center in Tampa, Florida. I was overwhelmed, scared, and missing my kids and my family, but when I got to Moffitt, I felt calm for the first time. I could tell they had a plan. While this was overwhelming to me, this was not their first rodeo. The first nurse I met was also a leukemia survivor--talk about meeting the right person at the right time. It was so helpful to hear his story and see him thriving now.
I went through three full rounds of hyper CVAD. I had many blood and platelet transfusions along the way. The goal was to get me to remission and proceed with a bone marrow transplant. My brother and sister were both found to be half matches, but they were able to find a complete match in the non-relative donor database. So, I had an allogeneic stem cell transplant in March of 2021. It was a rough recovery. The immediate aftermath and the first month or so after the transplant were tough. Even three months later when I finally got to go home, I was weak and still in recovery mode. But I am now 10 months post-transplant and feeling great.
I continued to work throughout most of my treatment and the transplant because I love my job and needed the distraction, but now I'm also cleared for some limited work travel again. I am forever grateful for the support of an amazing network of family and friends. They stepped up with resources, jokes, meals, and every fuzzy sock and blanket a girl could need while hanging at the hospital. I'm able to attend my daughter's soccer games again and keep up with my 3-year-old, basically getting into my “new normal." It may not look like what it did before diagnosis, but it feels great.
I am so grateful for the research that continues to make advancements in treatment. At my initial diagnosis, my team was a bit concerned about a genetic mutation they found in testing and ultimately changed up my treatment plan as a result. Additionally, reading the stories of survivors continues to inspire me every day. So, thank you to The Leukemia & Lymphoma Society (LLS) for continuing to fund these important advances in research, allowing clinical teams to find the best treatment for each patient, and for creating a network of caring and hope for patients, survivors, and families.
Sarah
B-cell acute lymphoblastic leukemia (B-cell ALL)
