When Work Hits Home: Hailey’s Leukemia Story

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
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. Denise is a mom of four children, Gage (19), Max (18), Megan (8) and Hailey (6). Hailey was diagnosed with acute lymphoblastic leukemia on September 24, 2011 and is a patient of Dr. Olshefski. Denise lives in Blacklick with her husband, Jim.

5 thoughts on “When Work Hits Home: Hailey’s Leukemia Story

  1. Diana Ellis on said:

    I remember the day you told me…I cried so hard! I have know this beautiful little girls since she was months old and this can’t be happening to her…we have kept her in our daily prayers since Sept 2011…look how far she has come! We love you guys and will continue to spread awareness about Pediatric Cancer xoxo Diana and Jared

  2. Hi Denise,

    We met you a year into this journey. I remember hearing that Hailey was going to be in Trevor’s class, and how amazing the teachers were helping the kids understand about hand sanitizer and washing their hands properly throughout the day. In my mind, the environment at the school couldn’t have been better.

    Hailey’s an adorable and sweet little girl. We will keep Hailey and all of you in our prayers until she rings the bell in November and beyond!

    All the best,
    Jenny

  3. Thank you for this article. I can certainly relate to not knowing the symptoms in our children. I thought that perhaps my 30 year old son had an ear infection, or maybe diabetes. A blood pressure issue? I was shocked when he received the diagnosis of AML. I later wondered why we parents don’t know symptoms of Leukemia. Why are there not public service announcements on television like there other for breast cancer, heart attacks ? Maybe it could warn us that if our children look extremely pale, they need to see a doctor immediately. I felt terrible – as his mom- that I hadn’t known how very sick he was. He is in remission now and we are grateful for each day!

  4. Lisa Evers on said:

    I remember when she was a preemie!! I can’t believe how big she is now! I am glad I happened across this article :)

Leave a Reply

Your email address will not be published. Required fields are marked *