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 Mindi Finch
Earworms. Those bits of music and lyrics that worm their way into your ear, then tunnel through your brain on an endless loop. For the next several moments, you can’t get it out of your head. You will eagerly seek out something to break the cycle. But what if these mind numbing tunes, normally like nails on a chalkboard, became a salve to your soul? An earworm can become a mantra, a touchstone, a glimmer of hope and an affirmation.
2009 was to be my year of change. Obama was sworn into office and change was sweeping the hearts of our nation. I had taken the first fragile steps on my way to significant “ch-ch-changes.” Little did I know what The Universe had up her sleeve for me. I am mom to three offspring. All my life my only solid goal was to be a mom. My last child arrived June 2005. Upon exiting the womb and finding himself in my arms, the newest of my brood gazed up at me with an expression one might find on an aged Buddhist monk. His body oozed serenity while his eyes sparkled with wisdom. This tiny spirit came to be known as Gregory.
Being the youngest of three, Gregory was exposed to and came down with all kinds of respiratory illnesses, common head colds. Considering how much he was exposed to with two older siblings, I never gave much thought to the frequency or severity of these illnesses. With each illness, fierce fevers would be followed by a week or so of coughing, a runny nose and sneezing. At 20 months old, we did have an unusual five day stay in the hospital when Gregory acquired Rotavirus, a gastrointestinal illness that results in severe dehydration. A few days of gut rest with IV fluids allowed his body to correct itself. So far, so good. When you are a parent, you expect to have at least one hospital admit with your kids, and I finally had mine with my third born. But then life quickly returned to the crazy, joyous and raucous chaos that we have always embraced.
Enter February 2009. A time that is frozen in my core. Gregory, once again, had a head cold. This time it lingered longer than I was comfortable with, and it was joined by two symptoms that struck terror in my heart from his time spent inpatient with Rotavirus: dehydration and lethargy. After a trip to his pediatrician, an afternoon in the ER and 48 hours in the hospital, I heard the words no parent ever thinks he/she will hear: “Your child has cancer.” My world was shattered with that brief four word sentence. My wise, light-filled and charming little three-year-old had cancer and would be enduring a treatment that kills 50% of the people who receive it. Gregory needed a bone marrow transplant. His only hope at survival and he needed it STAT. From this point forward we, started “livin’ on a prayer”.
As we endured this process, I wrote, Facebook’d, networked and found the childhood cancer community. Underpinning all this work, grief, fear, anxiety and tiny brilliantly-lit moments of joy, my spirit was echoed through music and lyrics. A sweep of my fingers across the keyboard allowed me to convey how things were in that moment, to family, friends and my expanding childhood cancer community at large. Without revealing the exact thoughts in my brain, I could express, work through, and cope with the raging emotions in my heart through a few lines of lyrics.
Gregory’s treatment progressed and we found ourselves in Seattle, Washington, at Seattle Children’s Hospital, beginning the arduous odyssey in an attempt to save his life. The idea of hope has always been a struggle for me. Without consciously acknowledging the idea of hope, my brain tentatively searched for a whisper of a future that included my youngest child. Gregory’s treatment would take him to the brink of death. His body would be pummeled with high-dose chemotherapy over a six day time frame in order to destroy every remaining cell of his existing bone marrow. His leukemia is genetically hard-wired into the DNA of his marrow. Complete annihilation was the goal. Only an infusion of donor bone marrow stem cells offered a glimmer of hope that would allow his body and spirit to stay with us for longer than his disease had proclaimed. These dire circumstances forced me to find hope through hoping for hope.
Family and friends, who understandably had no concept of what we were actually enduring, kept insisting that Gregory was going to be all right. It was the only way many could cope with the fears I was facing: by offering a societal platitude that did nothing to assuage my fear and anxiety, yet gave them a tool to confront our reality while protecting their own hearts. This sentiment wormed its way through my heart, traveled to my brain and sought out a connection that would link my emotions and my thoughts in a way that would give me permission to hope. Eventually, this connection revealed itself as an earworm. Every time someone would utter this idea, my head would default to Bob Marley’s lyrics in “Three Little Birds”: “Don’t worry ‘bout a thing / ‘cause every little thing gonna be all right”.
These hopeful and free words echoed through my brain during every chemo infusion. Through every acceleration in his body temperature. Through every moment when Gregory’s gut rebelled and tried to heave up the non-existent contents of his belly. Through every time I glanced at his shockingly beautiful bald head. Through every spasm of pain that erased the glimmer from his eyes. Through the days, weeks and months that his body rebelled against the brutality of our attempt to save his life.
“Don’t worry ‘bout a thing / ‘cause every little thing gonna be all right.”
Bob Marley’s earworm is a very welcome mantra that sits alongside those bone chilling words: “Your child has cancer.” Through these last four years, music and lyrics have continuously and faithfully been my boon companion. I find my life filled with solace, joy, remembrance and grief. Through events that bring thoughts, which trigger emotions, earworms have cradled my spirit. Allowing me to cope with the trajectory of my path that The Universe has placed me on.
Ironically, every little thing is all right. They are exactly what they are meant to be. For the time being, my “Three Little Birds” sleep soundly each night, after I’ve embraced each one goodnight. They are still with me, safe in our nest. Gregory has survived his diagnosis, yet with any traumatic event, I often find myself slipping into fear and anxiety. With much more frequency than I would like to admit. During those times, I plunge into my catalog of earworms and remind myself: “Don’t worry ‘bout a thing / every little thing gonna be all right.”
Grateful thanks to Mindi for sharing her story of finding hope. Mindi herself has a blog, MindiTheMagnificent, and every September publishes a post called, “What YOU Can Do to Support Childhood Cancer!” Please read her words and share in your circles.
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Mary Tyler Mom 