The week leading up to Friday, September 24, 2011 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.
I think when you are immersed in a medical field you are always projecting symptoms of the diseases you work with onto your children. Some common symptoms of leukemia are bruising and a rash called petechiae. My four-year-old daughter, 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.
Even though I work in the field, as a parent you don’t expect cancer. You expect strep throat, stomach bugs, broken bones and stitches. You cannot ever imagine that someone will tell you your child has cancer. Then you have to call your parents and older children in the middle of the night actually say it out loud. Hailey has leukemia. 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.
It is hard to believe it has been almost two years since Hailey’s diagnosis. Hailey has handled her treatment remarkably well. She is in the last phase of her treatment called long term maintenance. She has had little side effects and a great attitude. In fact, she LOVES coming to the hospital for her lumbar punctures with chemotherapy. The nurses, doctors and other staff who take care of her are her friends. Hailey is scheduled to ring her last chemo bell this November. Are we excited? Absolutely, but we are also scared. There will always be an element of fear in the back of our minds.
Cancer is the leading cause of death in children under the age of 15. Every day in the United States, 32 children are diagnosed with cancer and 4 children will lose their fight. The survival rate for leukemia is excellent now compared to several decades ago, but there is still a long way to go in regards to other childhood cancers. Even if children come out of treatment with little side effects, long term effects can still show up into adulthood. The late effects of cancer and treatment could involve the heart, lungs, bones, teeth, eyes, growth, puberty, learning, memory, emotional well-being and fertility. Treatment can also lead to secondary cancers. Hailey will always be under my watchful eye.
September is Childhood Cancer Awareness month. Please wear gold to support the warriors and heroes that are kids fighting cancer.
*The photo above shows Hailey during treatment (left) and her now (right).
Denise Ell is a Molecular Specialist in the Molecular Genetics Laboratory at Nationwide Children’s Hospital. Her main responsibilities currently include coordinating, preparing and distributing pediatric and adult cancer samples banked at NCH to investigators for research.
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