Beyond the Gold

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It was Christmas time 1978 and all I wanted was a Simon (you know the old-fashioned pattern game; it was all the rage in 1978); more than that though I wanted to be at home with my family. Everyone was at our house: EVERYONE! Up until that point in my life, such a gathering had never happened. What should have been a red flag to me was, in fact, joy at the soul level.

There was a tree to be decorated, stockings to be hung, and a star to be placed. There were pancakes to be eaten, presents to be opened, squabbles to be had, and snow to be packed into the most elaborate fort I’ve yet to see. There were Christmas cookies, hot chocolate, and chicken noodle soup. There was story time with our grammy. There was SO much fun to be had.

Oh yeah, there was one other detail of the day, I had just been diagnosed with cancer, Ewing’s Sarcoma. Yes, this was the Christmas that began the story of cancer in my life and the lives of my family, friends, and countless numbers of strangers.

The halls were not decked with gold ribbons. The halls were full of giggles, hide and go seek, board games, and expressions of love. Our house for all intents and purposes was brimming with joy; however, our joy was tempered with great concern, unknown, and uncertainty as childhood cancer had entered our lives, intruded upon our celebration, and preyed on our fears, our vulnerabilities reminding us to make the most of every moment, to stay above the fray, and to not borrow trouble from tomorrow.

Chemotherapy and radiation began post haste come the first of January as I was slated for 30 radiation treatments to my left chest wall (i.e. the tumor bed) alongside of 7 cycles of multi-agent chemotherapy, including Vincristine, Cytoxan, Doxorubicin,and Actinomycin-D as part of a dose limiting toxicity clinical trial to establish dosing guidelines. I called it the nuclear option: seriously!

I’m going to yada-yada-yada the two years that followed as I’m pretty sure you can guess how I spent most of my time, and pick up where the story gets really interesting: the End of Treatment.

To be quite candid with you, it didn’t phase me a bit; I was thrilled to be rid of treatment. My parents, on the other hand, didn’t seem to share my elation. Obviously, they knew WAY more than I did. Thankfully, they were wise and discerning with regard to what information I needed to know, and what was simply unnecessary given my age.

Days became weeks; weeks became months; months became years; years became decades which meant that everyone was giving themselves permission to begin to exhale.

I graduated from high school with honors going on to earn a Bachelor’s degree in Psychology from Furman University, a Bachelor’s of Nursing at Johns Hopkins University, and a Master’s degree in Nursing from the University of Florida. I married college sweetheart in 1994 and we welcomed our son into our family in the early 2000’s.

I practiced exclusively within the pediatric realm of cancer care establishing a wellness clinic for adult survivors of childhood cancer. You see, I have always had a well vision of myself, and I have not seen an oncologist since that last cycle of treatment. I have been diligent with my lifelong follow up; I am educated and equipped; I am mindful of my resources though should I ever have need for one again.

Mine is a childhood cancer story which carries inherent risks for late effects of the treatments that saved my life: recurrence, heart failure, restrictive lung disease, secondary malignancies, infertility, and peripheral neuropathies to name a few.

Thus far, I’ve experienced a beautiful pregnancy and daily enjoy our now teenage son; I live with chronic restrictive lung disease which means it will likely take me longer to get over a cold than you and I’ll never run a marathon; I have some minor (and I do mean minor to the tune of why am I even mentioning it) numbness and tingling to my fingertips and toes.

Lastly, my heart failed quite rapidly in April 2008 following an open heart procedure to repair my mitral and aortic heat valves. The surgery was a screaming success; however, my left ventricle (the ventricle responsible for delivering oxygen to the body) completely collapsed under the weight of the new pressure dynamics created within my heart.

Bottom line: I needed a heart transplant.

Within 3 days of arriving by air to the Cleveland Clinic in Cleveland, Ohio, an incredible family amidst the most catastrophic of all losses gifted their daughter’s heart to me. It has been almost 8 & 1/2 years, and her heart is like a drum that won’t stop beating reminding me with each beat that mine is a cancer story and her life is now an integral part of me, my story.

As we walk through Childhood Cancer Awareness Month, may we be mindful that it’s not about the gold ribbon and going gold, it’s about the children, their families, and their support networks coming alongside of one another amidst the good, the bad, and the unthinkable. Let’s take childhood cancer beyond the gold…



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