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. Today’s guest blogger has used pseudonyms for both she and her son.
By Leah Richards
When my son Matt was just twenty months old and learning to walk, he fell hard and ripped his brow open on the corner of a table in our family room. As I was coming down the stairs I heard my husband scream and then there was that pause, the silence every parent fears right before their child gasps and pulls enough air into their tiny lungs to let out a wail. “What happened,” I asked my husband, “weren’t you watching him?” “Of course.” he replied, “he just tripped over his own feet and fell.”
We drove to the local ER while I applied a bloody washcloth to staunch the blood that would not stop flowing. The ER doctor refused to stitch up my son as he said the skin had torn open like a ripe cantaloupe and the scar would be disfiguring without the help of a professional. We drove twenty miles to a different hospital and waited two hours soaked and sticky, covered in our baby’s blood for a plastic surgeon to repair my son’s brow.
For weeks I could not let go of the idea that my son’s face would never be the same again. That in a brief moment when I was not there to catch him and break his fall he had become damaged and the the scar was a constant reminder of my inability as a parent to protect him from what life was just waiting to dole out. Today you can’t even see the scar. The plastic surgeon did some excellent work.
There were other accidents as Matt grew and the nicks and grooves of a life well lived worked themselves into his skin and left their marks. A fall he took running on a pool deck left his tongue split down the middle like a snake’s, so deep and jagged that the ER doctors were forced to suture it back together with stitches that eventually dissolved on their own. There was a tumble from his bike when he was six after I had warned him again and again to slow down, that he was a new rider and that he was being a daredevil. He took six stitches in his chin and once again I was left unsettled and fearful, an ugly feeling deep in my gut that somehow I was failing at this parenting gig.
Each time Matt was hurt it was a shock to my system. However, with time, each wound healed and the scars became nothing more than a story I could tell at Thanksgiving dinner or share with friends over lunch. The scars provided closure, a literal sealing of a story that was terrifying in the moment, but could be laughed about as the years went on. My son’s scars meant that scary things happen to kids sometimes, but in the end everything turns out just fine.
The cancer first appeared in Matt’s neck. He was just 13 in 2009 when he was diagnosed. The mass was huge like a golf ball shaped bump that sat atop his collarbone pushing up and out from the ribbed neck of his Beatles t-shirt. In order to determine what kind of cancer it was the doctor told me they had to do a biopsy and excise a piece of the cancerous lymph nodes from his neck. I remember begging the surgeon to try and keep the cut small, as I knew a scar across the side of his neck would be a constant reminder of the cancer. He promised to try his best but when he sought me out after the surgery he avoided my eyes. The nodes were so large and so difficult to retrieve that my son now had a 4-inch scar across his neck. It was so deep and so wide that they had to insert a drain tube that twisted down and filled a plastic bulb with pink fluid that a nurse would empty and measure.
They cut into his tender skin again just a few days later to insert the port-a-cath that would be used to send the chemotherapy into his blood stream to try and cure the lymphoma that had invaded his body. They used it to draw blood and check his counts and to add pints of blood when his hemoglobin levels dropped so low his lips turned white and his skin grew cold. Now there was a lump in his neck with a long line of black stitches threading through his fair skin and a small mound protruding from his chest where the port pushed out like a thick coat button. I was filled with chronic fear and desperation as the illness marked my child’s body with deep, red surgical slashes.
The scars were just the beginning and soon the time came for radiation treatments, which would give my son the best chance of survival. The techs dipped needles into thick blue ink and dotted a constellation of tattoos across his neck and torso so they would know exactly where to send the beams of cancer killing heat. The marks are permanent and trace the path of destruction the cancer took inside Matt’s body through places I had never heard of before, mediastinum, axillary, supraclavicular. I know their names now as well as I know my own.
This is what we are left with four years after my son survived the treatment that would ultimately cure his cancer and save his life.
He is tall and strong, intelligent and wise, serious, and at the same time hysterically funny. His scars have healed beautifully and the tattoos have faded and become covered somewhat by the light dusting of hair on his chest. These marks should be the end of the story as scars are in a sense closures.
A wound is opened and then it is sealed shut and in time you can attempt to forget that it is there. But the scars of pediatric cancer tell a different story. These scars offer the tale of a family broken, their innocence and thinly veiled belief that life will treat them with some kindness is shattered and their life narrative is forever altered.
Cancer laughs at the belief that a parent has control over what will happen to her child and the scars, instead of providing a happy ending, constantly highlight the uncertainty of life and asks, “what if?” It is in this very uncertainty that we, the parents of kids with cancer, pick up the pieces of the shattered narrative, try to shake off the dust, and do our best to write new life stories.
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Mary Tyler Mom 