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What September Means to Me: by Melinda Marchiano

goldribbonby Melinda Marchiano, Childhood Cancer Advocate

 

September is a slow and mesmerizing free-fall.  It is a sobering, coming down from the carefree adrenaline of summer, and the distant hope of a season not quite yet arrived.   It promises two things—a somber end to summer’s sweet extroversion, and the commencement of a season marked by a period of comforting investment in one’s own heart.  Spirit’s fire settles.  Passionate flames retreat, tucking their energy into the folds of a quieting soul.  They hold within them the elation of the summer, and the bitter parting from what they knew could not last forever.  Yet their amber glow pulses with the hope of a time to come, a time where they reignite and fill their intended purpose, and light their predestined corner of the world.  To me, September is a recharging of the soul—recognition of what has come to pass, and the settling into a hopeful incubation for the work that lies on the horizon.

 

Within the world of childhood cancer, the same holds true.  September—slowly painting more and more of this country gold—is truly a time of recognition and rekindling.  And while it may seem that childhood cancer advocates across the nation wait with baited breath for the sun to set on the last day of August, it has been my deep involvement with the many movements of Childhood Cancer Awareness Month that has given me the understanding that this singular month is by no means the main event.   I have been given the great honor of knowing individuals who have dedicated their lives to the fight against childhood cancer.  These are moms and dads whose children were given a 0% chance of survival, friends determined to help their financially devastated neighbor, and nurses who simply couldn’t separate their heart from their work.  These are researchers who remain hopeful with the lift of each test tube, and those whose innate, human need to give was simply claimed by an army of brave, bald, beautiful children.  I am in the category most predictable in nature—I stand with the hundreds of thousands of childhood cancer survivors who “couldn’t turn away”.  I stand with the group that was funneled straight from their last dosage of chemo or radiation appointment into the world of advocacy, where you simultaneously process and solidify “your story” and suddenly find yourself at silverware-clinking, alcohol-induced donation-driven fundraisers.  Like many patients, survivors, and families affected by childhood cancer, as the world of advocacy found me, the looming question of why began to receive an answer.  Each day, it was more and more not simply a necessary act of “giving back”, but the need to do something with a life course that was so unique and so challenging that the perspective it had given must not simply sit and rot on the shelf of an ordinary, nine to five life.

 

It is in this world of tremendous passion and purpose that I have encountered those who must do something each day.  To them, every month is Childhood Cancer Awareness month.  And every day is a chance to take one step forward or, at the very least, keep pushing back.  The work comes in many forms, and I have been touched by the breadth of tangible, experience-driven generosity shown by individuals and organizations within the community.  Perhaps it is a mother whose child was devastated by hair loss custom-making thousands of hats, or a survivor ravaged by late effects advocating for less toxic treatments, or maybe a man who once met a small boy with cancer and, after realizing the duration of his pain, decided to bike across the nation to raise money for research.

 

These people are a unique breed of heroes.  They are the ones who don’t look away, despite the utter horror of childhood cancer.  They are the ones who wake up and think about how they can make a difference for a child who is somewhere, lying in a hospital bed, never imagining life would arrive at this point, but surely hoping the next moment arrives.  They fight for them.  They fight for me.  At 13, I became one of those bald-headed, stare-inducing, voiceless children.  And it took six months of chemotherapy and radiation, five years of intensive recovery, and nine years in the world of advocacy for me to understand the hearts of childhood cancer advocates and consequently, what September truly means.

 

In no way is September a “quiet” month for these people.  No, in fact, it is often the busiest, most exhaustive month of the entire year.  Yet amidst gold-spattered events and relentless social media campaigns, there is a moment where the advocate stops and takes a deep breath—he or she sees a bald child in the foreground of the Capitol, holding a sign reading “I am worth more than 4%”.  He or she sees a thriving, vibrant survivor speak the words, “that experimental trial saved my life”.  We as advocates take a moment each September to stop—in this momentary suspension of time, we remember why we do what we do.  We reflect gratefully on the progress made, and are simultaneously humbled by the mountain of work that lies before us.  And so in the dizzying blur of what most may think is the “main event” of the year, we find ourselves very much in a free-fall—a sobering, motivating free-fall that stokes the very embers of our soul and reminds us all why we do what we do.          

 


 

melindamarchiano2Melinda Marchiano is a recent graduate of Pepperdine University with a BA in Creative Writing. She was deeply involved with the university’s dance company as a director, choreographer, and dancer. Melinda reg­ularly brings her message of hope to others as an inspirational speaker through keynote addresses, small groups and special speaker events. Melinda has trav­eled over 7,000 miles, through 28 states, and visited 15 children’s hospitals in what she named the Children’s Hospitals Hope Tour. Following this tour, she has continued her efforts—visiting patients, giving presentations at hospitals, and speaking with the media to raise awareness for childhood cancer. Melinda generously gives her time out of her passion to help others who are fighting cancer. She hosted the powerful childhood cancer documentary, The Truth 365, and speaks for multiple cancer organizations as well as various church, support, business, and school groups. Recently, she was named an ambassador for ccThrive, an organization working to help childhood cancer survivors not simply survive their disease, but thrive.  Melinda currently resides in Los Angeles, CA and is principle dancer with Cantinas Dance Project.  She is excited to dance, choreograph, and write, all while continuing to advocate for children with cancer.   Her ultimate goal is remind others of beauty and hope through all that she creates.

 


 

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