Name: Audrey
Age and Date of Diagnosis: Currently 7 years old. Diagnosed at 12 months – 11/12/2015
Diagnosis: Primary HLH
Location of Treatment: Cincinnati Children’s Hospital
Child’s Interests: Horseback Riding, Swimming, Reading
Our daughter, Audrey, was diagnosed with HLH on November 12th, 2015, only 11 days after her first birthday. I will never forget holding Audrey in the hospital room while she slept on my chest and hearing them say that she had 7 of the 8 markers for HLH and just being in complete shock. I just kept thinking, "Is this really happening? How did we get here? What is going to happen to our sweet little girl? Is she going to get to celebrate another birthday?" I just couldn't and can't imagine my life without her and suddenly we were talking about this terrible disease that has just awful survival rates and all of the poison and procedures that would be needed to save her life. She just looked so tiny and so innocent lying there with me, how could something so awful want to hurt someone so perfect?
Everything about Audrey's illness was challenging. Her immune system was severely compromised so we were no longer able to take her out in public. My husband stopped going into the office for fear of bringing home any germs and I stopped working completely to take care of our child. Audrey went from being a happy, healthy little girl to suddenly needing chemo treatments, blood and platelet transfusions, surgical procedures and LOTS of medications.
Audrey received her bone marrow transplant on February 25th, 2016…a day my husband and I will never forget. We were excited and hopeful but we were also very scared and nervous. At 7:56pm Audrey received 193mLs of the most wonderful stranger’s stem cells and saved my daughter’s life. Audrey slept through the procedure but I remember holding her in the hospital bed and watching the cells enter her body through the IV and just thinking what an absolute miracle it was. How could something that looked so simple be so life-changing?
The days following the transplant were really tough. Audrey was very sick from the medications needed prior to the transplant and we were very anxious to find out if her body accepted the cells. But, just 12 days later, we were told that it had worked; our girl was going to be OK! Audrey spent 35 days in the hospital and we lived in Cincinnati for a little more than 6 months but on June 4th we were told that we could return to our home in Vienna. And today, almost six years post-transplant, I am happy to say that Audrey is doing extremely well. She is a smart, caring, kind, funny, outgoing, active little girl with lots of opinions and even more smiles and laughs.
There’s no way to really explain what something like this does to a family but we’ve become resilient, understanding, strong, brave and, most of all, we have learned to just take life one day at a time. We value every single second we get to spend with our little girl and feel very lucky that we are able to say that our story has a happy ending.
