The week leading up to Friday, September 24, 2013 was just like any other week. I had recently completed a research project where I work in the Molecular Genetics Laboratory at Nationwide Children’s Hospital. We tested hundreds of pediatric acute lymphoblastic leukemia samples for the presence of mutations and deletions in genes thought to be present in patients who have a poor outcome. While our lab performs many clinical molecular genetics tests, most of my work experience has been focused in our Acute Lymphoblastic Leukemia (ALL) Reference Laboratory. That week I had been working with the incoming leukemia samples, processing and banking bone marrow and blood for future research. Our lab receives newly diagnosed, end of induction and relapsed leukemia samples from all over the country and some international sites. We are always busy.
Some common symptoms of leukemia are bruising and a rash called petechiae. My eight-year-old granddaughter, Hailey, had none of these symptoms, but she was very pale. One of her daycare teachers had said that she looked “transparent.” Hailey had her annual well check doctor’s visit that Friday. I was so sure that there was something wrong, so I asked for a complete blood count at her well check. That night Hailey was admitted to Nationwide Children’s with the diagnosis of ALL, the very type of leukemia I had spent all week processing.
I remember them taking Hailey to her room that first night, and I will never forget that moment of entering the Oncology unit. They pushed her wheelchair through the doors and Hailey and my husband walked right past the Oncology sign. I stopped. I could NOT go in there. I sat on the couch and sobbed. Our world had changed forever.
Those first few months were a whirlwind. When Hailey was discharged from the hospital that week she had bags of prescriptions. We left our house the week before thinking she was anemic, and we brought her home with cancer. She was immediately pulled from daycare and wouldn’t be able to return for almost a year. (That was the hardest part for her.) We bought hand sanitizer by the jugs and stocked up on masks. She was banned from large crowds, swimming in freshwater, playing in mud and sand boxes, reptiles, farms, birds and campfires. She couldn’t be around anyone who was sick or had been around someone who was sick. We learned had to navigate the many clinic appointments and watch for side effects. We learned about central lines and even at one point administered chemotherapy at home. Through all of this we also had to ensure that Hailey was not scared and find time for our other three children.
Now Hailey's condition is still deteriorating. Her parents and all the family members are raising money for her medical expenses. We hope that the kind friends here can help my granddaughter.