Never Once

Diagnosed with Ewings Sarcoma when I was 8 years old in 1978, I am now 36 years out from that diagnosis, 36 years beyond the cure, 36 years of hope, fullness of life, and future. In addition, I am an almost 6 & ½ year survivor of heart transplantation performed in April 2008.
My lived experience has been laden with trials, yet tempered with great love and concern on the part of my family, friends, friends of their friends, and even people unknown to me, strangers. Never once have I ever walked alone.
I'd like to share with you a letter that I wrote to my mother who walked alongside me throughout my bout with childhood cancer, then actively sought to educate me about the risks my treatments posed to my future health and wellbeing.

“Dearest Mom,

How do I, an independent young adult, married with a family of my own, in these days we never imagined we would have, even begin to express to you the gratitude that will forever reside in my heart to you and for you? To be honest with you, I'm not convince to do so is even possible.

No mom enters into motherhood thinking that her son or daughter will develop cancer as a child, yet when I was that child, you rose to the occasion no matter what was thrown your way.

Mom, I had no idea that day at Children's in Pittsburgh that we were walking onto a battlefield to engage in a fight for my very life. It was a firestorm of information in a langauge unknown to me, information that must have been excruciately painful for you to hear as it was applied to flesh of your flesh and bone of your bone: your blue eyed, blonde haired little girl.

You were so poised as I watched, your mind set upon asking questions and securing answers. Your tenacity was stunning as you would not relent until a satisfacory answer was given. What a blessing that you could speak medical speak with the best of them because you were one of them. This time, however, you were mom, first; nurse, second as you came alongside of me advocating for my needs, answering my questions, requesting pain medication when I was hurting so badly I wouldn't breathe, swallow, much less cough, and the list goes on and on. You even managed to turn the hopsital laundry service upside down until FROG had been found and returned to me on a mid-December day.

Having studied me for almost 9 years, you knew that I would cope best by being prepared AHEAD of time, yet not TOO far in advance. You were ALWAYS right on time. You knew that just one blindside would destroy my ability to trust you and dad as well as my team of doctors; you knew that trust would be essential, especially if I were to die; therefore, you guarded my heart and my ability to trust by speaking the truth in ways that I could understand.

You always made treatment days fun with waiting room picnics, double solitaire, checkers, cross-stitching and guessing games right out of the gate with my very first cycle. I remember the night before my first appointment, you sat down on my bed to ask me if I though my medicines would have color, and if so, what color would the next morning bring: clear, yellow, or red? Clearly, you knew some had color!

You made the unknown known and tolerable for me as you began almost immediately to teach me the proper names of each medicine as we learned what to expect upon our return home after each appointment which usually meant 12 hours of nausea and vomiting without reprieve in a day when Zofran was only someone's wildest imagination.

You also knew that I would withdraw and die if I was isolated and kept from being with my friends or making new friends along the way. I remember the in pencil planning calendar because ink no longer applied as everything was subject to change. I remember treatment dates going on first and everything else taking backseat to the priority of getting rid of my tumor.

The next items added included my dad's travel schedule, brother's sixth grade school and activity schedule, then at home tutoring, school visits once a week, and play time for me with friends at our house. I still remember your awesome craft box and wondering if it was my magnetic personality or you and your box that drew my friends in each and every week.

You maintained your expectations of me. You expected normal things from me. You expected me to learn my spelling words and to be prepared for my spelling tests every Thursday. You expected me to read and know my multiplication tables. You expected me do my chores. You expected me to be kind even when I didn't feel like it. You expected me to love my brother even though I didn't like him. You expected a respectful attitude at all times. You showed me that I wasn't the center of the universe encouraging me to be mindul of others. Yet, you extended grace to me when grace was much needed.

Bottom Line: you expected me to live and you breathed that belief into me every day.

Finally, you understood that I wasn't going to be bold with my new found baldness, yet I would be too self conscious for a wig. Your solution: scarves. Thank you for respecting me as a person while seeking to protect and preserve my dignity; I trust that you will not be offended when I tell you that in retrospect, I SO wish I had been bold: oh well!

With the end of treatment serving as my first significant milestone, there were many more to follow though we couldn't see it at the time. We were too busy holding our breath, you and dad more so than me, but days turned into months; months, years; and years, decades.

I graduated from high school (25 years ago: anniversaries most run from, but moments I savor), then nursing school, and ultimately, graduate school. There were first dates, boyfriends, Friday night football games, dances, and homecomings. There was college, more boyfriends, football, campus events with a little studying thrown in for good measure.

There was, and still is, marriage, then the son I was never supposed to carry much less birth and the joy of being able to stay at home with him, a gift in ways I would come to realize 5 short years later when my heart failed and my life was threatened once again.

Now, almost 6 and ½ years later with my heart-brand-new, I have joyed in first days of school, birthday parties, Formula 1, soccer and football games, trips to Disney, Legoland, Hawaii, and my personal favorite, summers in Pennsylvania with son, your grandson, in tow; a grandson, you may not have been able to envision in the 1978. Nevertheless, a hope you held close for me.

Mom, I believe you were chosen, indeed called, to be my mom for such a time as when cancer would enter my life, when suriving would become a reality, and when life would be threatened once again. You were custom made for me; my every need, you not only anticipated, but you also provided. You were fitted for me unlike any other, uniquely designed to come alongside of me, to steady me, to calm me, to comfort me, to advocate for me, to above all love me.

Thank you for ensuring that my root system was deep and wide, capable of sustaining life, rich and full and strong enough to face the challenges of surviving survivorship.

Thank you, too, for the provision of wings; wings that would take flight as I believed I was more than capable of being independent in life and in owning my health and wellbeing. Thank you for being selfless in letting me go when I know everything within you wanted to hold me tight.

Thank you for establishing a bond-unbreakable between us.

Thank you for being my quieter, my woman of distinguished valor and strength of mind amidst grave danger, my quiet hero: my mom.

Thank you for making sure that NEVER once did I ever walk alone.

I love you: always...

Stephie