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Butterfly Blog

The First Casualty

The first casualty of my son's cancer diagnosis was kisses. From the time he started giving kisses, he kissed on the lips. I loved it. I have so many pictures of him kissing me on the lips, kissing my husband on the lips, kissing grandparents on the lips--everyone. He was a lip kisser. I remember sitting in the hospital less than 24 hours after his diagnosis of Acute Lymphoblastic Leukemia, reading Childhood Leukemia, by Nancy Keene, and taking notes as nurses and doctors and oncologists talked to us. Everyone kept talking about this thing called ANC--Absolute Neutrophil Count. I had no idea what it was in those first days--I had no idea how important it would become in our lives, and how our entire existence for the first 364 days would be measured and ruled by his ANC. I was just figuring out that a low ANC was bad, and a high one was good. I was just figuring out that a low ANC meant that germs could make him sick, hospitalize him, even kill him. I didn't yet have the opportunity to absorb the absolute changes in our lives, from the obvious ones to the small, seemingly insignificant ones.

The first casualty, the first concrete shift in our lives that I could point to and say, "This. Cancer is changing this.", was an uneventful moment. I realized that I would have to train my son to stop kissing on the lips when, while sitting on his hospital bed with him during Induction, I absentmindedly offered him a bite of my banana, as I always did. It hit me that my germs were on that banana--bacteria from my mouth was on that banana. I could no longer offer him bites of my food from my fork, from my plate, from my cup. I could no longer share my water bottle with him. He had been my running partner since he was 16 months old and I first strapped him in our BOB Revolution for my first post partum run. Once every mile or two, I would stop to check on him. I would take a swig of water and then offer him some water. He always took it, and it was a small tradition that I didn't know I cherished until I knew it was gone. I would have to teach him to not kiss on the lips. For 28 months, I had taken for granted the sloppy, affectionate way parents shower their love on their children, and the slobbering, open-mouthed, enthusiastic, body, mind, and soul way toddlers, in particular, love their parents. I would have to train my loving, affectionate, kiss-on-the-mouth son to not do that. My husband and I would have to teach him that the moments that make up a life--those handshakes and high fives with the neighbor or the friendly lady in the elevator, the shared bites of food off a fork, kissing parents and grandparents hello, goodbye, and goodnight on the lips, the casual mingling of germs that comes from a life of loving--we would have to teach him that those moments are dangerous to him, and we would have to teach our son to not create or participate in those moments.

I said earlier that the changes in our lives ranged from glaringly obvious to small and seemingly insignificant and unimportant. My son has been in treatment for Very High Risk ALL for 18 months, and we have another 22 months to go. In the 18 months since diagnosis, I have found that it is those small, unimportant changes that are often the most heart wrenching. I resent not being able to share my water with my son when we run--by the time he is off treatment and I could, theoretically, share a Clean Kanteen with him again, he will be too big and old for me to push in the jog stroller. More than that, I resent that I have trained myself to turn my cheek at the last second when he comes in for a big lip kiss.

The casualties that come from a childhood cancer diagnosis are innumerable. Every aspect of life and existence changes. In the coming months, I'll be writing about my son's diagnosis, childhood cancer, and being a caregiver to a child with cancer. I hope to give voice to other parents who find themselves groping through their own child's disease, and I hope to give myself peace of mind and outlet by saying and talking about some of the things people just don't want to hear sometimes.

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