Cole’s Story: The Lucky Ones

September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.  

By Michelle Zenie

On May 15, 2001, our family welcomed our second child, Aidan. For one week, we had a perfect little family of mom, dad, baby, and big brother, Cole. When Aidan was a week old, Cole (age 3) came down with viral symptoms – fever, fatigue, vomiting, lack of appetite. After three days of this, we took him along to the pediatrician for Aidan’s 10-day checkup.

The pediatrician was very concerned about how pale Cole was, some bruising we hadn’t noticed, and about the size of his liver and spleen. He did blood work right there in the office and sent it off. He never mentioned leukemia until he called later that evening (you know it’s not good when the pediatrician calls at 8pm!) and told us to head immediately to Yale Children’s Hospital (about an hour from our home in Connecticut). We went thinking we would be there overnight and ended up coming home over a week later.

Cole was diagnosed with standard risk, pre B-cell Acute Lymphocytic Leukemia (the “good” kind of childhood cancer). He endured 2 1/2 years of chemotherapy, including insertion and removal of his port, many spinal taps and bone marrow aspirations, daily oral chemotherapy, routine and emergency hospitalizations. He raged on steroids, ate 10 pounds of mashed potatoes at a sitting, battled chicken pox because of an unvaccinated classmate, stopped walking for a period of time due to muscle atrophy and balance problems, and missed a chunk of childhood. Thankfully, he is now a physically healthy 16 year-old. However, he deals with anxiety and some processing issues that are most likely the result of his leukemia experience.

September Cole1

Despite these challenges, we are the lucky ones. But we remember those days as if they were yesterday and we know not everyone who battles this monster is so lucky.

Which brings us to my story…the story of a mom who would always consider herself a “cancer mom” despite the battle being “over.” After an eight-year, much-needed “break” from pediatric cancer (mostly because I was dealing with my mom’s, then brother’s, then mother-in-law’s cancers), I started volunteering with our local pediatric cancer support organization, The Pediatric Cancer Foundation of the Lehigh Valley.

It was a great feeling to be able to do something positive for families going through the same experience I had gone through, especially since I knew how much that type of support would have meant to me at the time. In January 2014, I got the amazing blessing and opportunity to join PCFLV as Executive Director. Every day, I get to make a difference in the lives of local children with cancer and their families, as well as survivors and bereaved families. It is sometimes heartbreaking, but always heartwarming.

Pediatric cancer is real.  It is not rare. It is in my community and in yours. Probably more than you realize. It does not always look like a bald-headed, sick child. It might even be the kid running alongside your own on the soccer field. And you might even be standing next to a cancer mom in line at the grocery store. And even those “normal” looking children and families are fighting battles you can’t imagine. So reach out, be aware, and find out what you can do to help today!

Michelle Zenie is Executive Director of The Pediatric Cancer Foundation of the Lehigh Valley in Pennsylvania.  PCFLV is running their own series of childhood cancer stories from their local area called 30 Days, 30 Stories.  Read them HERE.  Or visit their Facebook community HERE.  

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