“Before Emily” and “After Emily” – A Mother’s Story

“Before Emily” and “After Emily” – A Mother’s Story

By Amy McKelvey

Amy McKelvey is a mother, CureSearch supporter and childhood cancer advocate. Her daughter, Emily, died just five months after her diagnosis of Acute Myeloid Leukemia (AML), on December 20, 2009 at age 17.

Before…

Emily with her mom AmyMy life now seems to be defined by “before Emily was ill” and “after Emily was gone.” It’s the measure of time whenever I think back on events, celebrations, memories, etc. Before her diagnosis, we were a typical, ordinary family of six. A second marriage for my husband Mark and me, we each brought two children to our blended family – Mark’s sons Caleb and Zach, and my two, Emily and Brendan. We were all happily busy with “life.” Emily cheered for her high school. Zach and Brendan were both involved with baseball and Caleb was away at college.

Emily was a counselor at a summer camp two weeks prior to her diagnosis. One week out of the year, the regular camp closes and during that week, the camp opens for children who have (or have had) cancer and their siblings. Normally, the special camp is staffed by its own counselors, physicians and volunteers, but that year, Emily wanted to stay and help. Emily called me and told me that she wasn’t sure why, but she really felt like she was supposed to be there. At the end of the conversation, she said “Oh, and by the way, my throat is REALLY sore, and my tonsils seem swollen.”

Emily at campWhen Emily returned home the following Friday, I took her to Urgent Care. The physician examined her and suspected that she had mono. Throughout the next week, she was tired and had such low energy that we ended up taking her to a physician while we were at the beach, and ultimately cut our vacation short and returned home to seek additional medical care. We walked into our physician’s office and an hour later we were told, “I’m sorry, but you have leukemia.” We were devastated and shocked as she had had a complete physical just months before and it was text-book perfect.

Facing Treatment as a Family

Emily began treatment the Friday after her diagnosis. She endured three rounds of aggressive chemotherapy and was hospitalized the entire five months. I took a leave of absence from my job and literally moved into the hospital with her, staying by her side night and day. I was virtually absent from Brendan’s life while Emily was in treatment. She was so vulnerable and subject to infection that visits from family and friends had to be carefully monitored. It was a very difficult time for all of us. We just all kept believing that Emily would pull through this and our family would return to the “before Emily was ill” timeline that so defines each of us today.

Sadly, Emily passed away on December 20, 2009. Just five months after her diagnosis, Emily was gone. The chemotherapy given to her to wipe out her cells to prepare for a bone marrow transplant caused irreversible liver damage and failure; there was nothing further that could be done.

After…

Before Emily’s diagnosis I would hear of parents who had lost a child and I would think that I could NEVER survive the loss of one of my children. But you do. And you do it through the grace that is given by God and faith and by unconditional love from family and friends. Even today, 10 years later, there are times when I am in complete and total shock that Emily is gone. It hits me at the obvious times like holidays and birthdays, but it also hits me hard at the odd times. Small things can trigger it-a memory, seeing a mother with her daughter shopping, a song on the radio, a favorite movie. I have also been blessed with some very vivid dreams that are so real and reassuring that I am convinced they are Emily’s way of letting me know that she is truly okay. While I know that she is where she needs absolutely nothing from me, I just miss being her Mom.

Now, I am busy with work and our children are grown. Mark and I are empty nesters. Brendan is almost 23 and just finished up college. Mark’s boys, Caleb and Zach, are doing well. Because of our experience, we all have a greater understanding of what is important in life and we don’t spend a lot of time worried about the things that don’t matter. We appreciate life and all of the blessings that we are given. It’s what Emily would want us to do.

As mothers, our instinct and duty is to “fix” things, to make them right. No matter how much I wanted to fix Emily, I couldn’t. Our job is to love our children, unconditionally and without fail. I know that I did that beyond a shadow of a doubt. But I couldn’t fix this. If your child is undergoing treatment now, know that you are not alone. Reach out to others for comfort and if someone offers to help, let them. This is a time when you can’t do it all, and people who care about you want to help.

Taking Action & Honoring Emily

In 2009, while Emily was going through treatment, her cheerleading squad participated in the local CureSearch Walk. That was the first time I became aware of CureSearch for Children’s Cancer. Our friends and family participated for the next couple of years and then, in 2011, I heard about the CureSearch Ultimate Hike. I completed my first hike in 2012. I was “all in” but never dreamed that I would become a repeat hiker and an advocate to promote the Ultimate Hike program and CureSearch. The people that I have met over the years were surely put in my path for a reason. I truly feel this is my calling and my way of giving back to those who may find themselves in my shoes.

I think most parents in this situation are desperate to do something profound to honor their children and carry on their legacy – to share their story, make something good out of something as devastating as losing their child. I know Emily would want me to do all of the things I am doing to make a difference in the pediatric cancer world. It allows me to share her story and to tell the world what an awesome young woman she was. I feel her pushing me to do the things that I do. Even in her absence from this earth, she’s still working her magic.

For 30 years, CureSearch for Children’s Cancer has worked tirelessly to accelerate the development of new, less-toxic children’s cancer treatments, including treatments for the cancer that took Emily’s life – Acute Myeloid Leukemia (AML). Learn more about the progress we are making thanks to the support of volunteers and advocates like Amy McKelvey.

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