Faith, Hope and Cancer

By Carolyn Koncal Breinich

Carolyn's life changed the moment she heard the words, "You have leukemia."

This is Carolyn's story of being diagnosed with cancer as a teenager, surviving treatment, and then navigating life afterward. She survived a major medical mistake, experienced miracles, discovered the healing power of dolphins, lost friends, fumbled her way throug

• Language: English
• Publisher: Bell Asteri Publishing & Enterprises, LLC
• Release date: Mar 28, 2024
• ISBN: 9781957604480

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Praise for

Faith, Hope and Cancer

Going through childhood cancer is a very unique and challenging experience, and it has certainly shaped the author's life and path. Carolyn does an excellent job of sharing about her story with childhood cancer in a very honest, vulnerable and accessible way. I love her story of how she found blessing amidst a time that would otherwise not feel so blessed. She talks about how she found spiritual hope, which is a pretty profound takeaway. This book is really good, and so is her life and perspective. I highly recommend this.

~ Chris Lawrence, Founder and Executive Director of Hope Has Arrived

Carolyn's ability to pull you into her story makes it feel almost like you're watching a movie on television. Her story is filled with pain, sickness, humor, and most of all, inspiration. She touches on every aspect of what cancer is like for a kid, from enduring constant needle pricks to losing her hair to the torment of treatments. She touches on family life and what this journey is like for parents and siblings and even extended family. And she dives into the realities kids at this age deal with where their peers are concerned.

~ Dana-Susan Crews, Author and Childhood Cancer Advocate

Faith, Hope and Cancer

Carolyn Koncal Breinich

Foreword by

Frederick B. Ruymann, M.D.

Professor Emeritus of Pediatrics

The Ohio State Medical School

Contents

Author’s Note

The Meaning Behind the Cover Design

Dedication

Acknowledgements

Foreword

Preface

Chapter 1 – Miracles Do Happen

Chapter 2 – The C Word

Chapter 3 – Initial Hospitalization

Chapter 4 – Staff Who Just Don’t Get It

Chapter 5 –Treatment

Chapter 6 – God Works In Mysterious Ways

Chapter 7 – Control

Chapter 8 – Family

Chapter 9 – Friendships

Chapter 10 – School

Chapter 11 – Transition of Care

Chapter 12 – The Happiest Place On on Earth

Chapter 13 – Dolphins

Chapter 14 – Bald Is Beautiful

Chapter 15 - Walking Away

Chapter 16 - Velvet

Chapter 17 – Death

Chapter 18 – Depression

Chapter 19 – Faith

Chapter 20 – Power  of Prayer

Chapter 21 – Trusting God

Chapter 22 – Being A Survivor

Chapter 23 – The C Word…Again

Chapter 24 – Advocacy and Awareness

Chapter 25 – Love Life, Live Life, Cherish Every Moment

Chapter 26 - My Cancerversary

About the Author

Faith, Hope and Cancer

30th Cancerversary Edition

Copyright ©2024 by Carolyn Koncal Breinich

Book design copyright ©2024 by Bell Asteri Publishing

Author: Carolyn Koncal Breinich

Cover Art by Michelle Johns Shaw

Contributing editors: Meredith Tennant and Judith Schwartz

All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means - for example, electronic, photocopy, recording - without the prior written permission of the publisher. The only exception is a brief quotation in printed reviews.

The opinions expressed by the author are not necessarily those of Bell Asteri Publishing & Enterprises, LLC.

Published by Bell Asteri Publishing & Enterprises, LLC

209 West 2nd Street #177

Fort Worth TX 76102

www.bellasteri.com

Published in the United States of America

ISBN:  978-1-957604-51-0 (hardback)

ISBN: 978-1-957604-49-7 (paperback)

ISBN:  978-1-957604-48-0 (electronic book)

Author’s Note:

This book is a memoir. It reflects the author’s present recollections of experiences over time. Occasionally, dialogue consistent with the character or nature of the person speaking has been supplemented. All persons within are actual individuals; there are no composite characters. The names of some individuals have been changed to respect their privacy.

The Meaning Behind the Cover Design

The cross on the cover was inspired by my Grandpa Johns in collaboration with my Uncle Mike, both of whom were Cemetery Memorial Architects. It is based on a drawing my grandfather did in 1980, the year I was born.  My cousin Michelle, a Memorial Designer,  followed our grandfather and her father’s profession. She designed the cover for me, perfectly capturing the image I envisioned for the cover, even adding her special touch.

The cross represents faith. 

The dolphins represent hope.

The orange ribbon represents leukemia.

The gold ribbon represents childhood cancer.

This book is dedicated to Linda Waugh.

Linda was my angel here on earth. God placed her in my life and without her grit and determination, I may not be alive. She knew something was wrong and fought to get the tests I needed to prove there was a medical mistake. She is now one of my guardian angels in Heaven. I am grateful I had the opportunity to say thank you and share the chapter I wrote about her before she passed away from her own fight with cancer in 2020.

Acknowledgments

I would like to thank first and foremost my husband, Lee. You believed in me enough to allow me to pursue my dreams and gave me the opportunity to write this book. To my parents for always being there for me and supporting me every step of the way. To my doctors and nurses at Children’s Hospital, thank you for saving my life. To all the patients I worked with over the years, I will never forget you. To my Fred Astaire family, you welcomed me with open arms and showed me how to live again. To Gena for helping me face my fears and giving me the motivation and strength to finish this book. I want to thank God most of all, because without God, I wouldn’t have been able to do any of this and I also thank Him for creating a path of good in my life.

FOREWORD

by Frederick B. Ruymann, M.D.

Professor Emeritus of Pediatrics

The Ohio State Medical School

    Seventy years ago, acute lymphocytic leukemia (ALL) was uniformly fatal. In the 1960’s clinical trials in the United States with steroids and VINCA Alkaloids were able to achieve temporary remissions, and subsequent trials with additional chemotherapy resulted in longer remissions and eventually cures. Thanks to the thousands of patients in institutions throughout the United States who participated in these studies, survival rates in ALL upward of 85% have been achieved. Exciting advances with immunotherapy, such as chimeric antigen receptor T-cells have provided hope for patients with relapsed disease. Challenges remain: molecular profiling has identified subtypes of ALL that continue to have inferior outcomes, (our Hematology/Oncology/Bone Marrow Transplant section hired the first two molecular scientists at Nationwide Children’s Hospital), improvements in the treatment of patients with relapsed disease still need to be made, and late effects of chemotherapy can affect physical and mental well being for many years after treatment.

    The emotional and psychological mayhem caused by a cancer diagnosis in a child can have a devastating impact on families in a way that affects care providers as well. Both atWalter Reed Army Medical Center and Nationwide Children’s Hospital I have tried to soften the trauma of childhood malignancy by organizing mutual outings including patients and their care providers. One of our nurse practitioners, Carla Hughes was an inspirational leader in developing and planning our Hem-Camp at Nationwide Children’s Hospital in Columbus, OH, and she also developed and annual T-shirt design contest which was an innovative facet of these yearly meetings. It was very meaningful and humanizing for our patients to see their care providers away from the hospital camping, fishing, and sharing. While walking through the hospital on my way to Hem-Camp wearing jeans and a T-shirt, one of my nurses was startled and said, Why, Dr. Ruymann you’re wearing clothes! Quickly realizing the surprise and meaning of her exclamation, we had a good laugh. That remark expresses the importance and meaning of Hem-Camp. The absence of a whitecoat provides permission and freedom for our patients to see us an ordinary folks. For us as care providers it was refreshing as well. This book’s author, Carolyn Koncal Breinich, was an enthusiastic and faithful survivor participant which might be highlighted by firing water balloons at Dr. Ruymann’s tent or putting mounds of Styrofoam peanuts in his sleeping bag. The entire treatment team of administrators, chaplains, secretaries, nurses, aides, laboratory personnel, as well as physicians were encouraged to participate in Hem-Camp. To personally learn that I had cancer only underlined the importance of periodic moments of fellowship and joy in God’s world.

    Nonetheless, there were many agonizing times as well, as not all our patients survived despite great creativity, effort, and prayer. Having a faithful spouse or trusted colleague helped make persevering possible.

One might ask who are the heroes?  I believe that our patients and their parents who have trusted us to care for their precious children are the real hero’s. Indeed, this responsibility is a sacred experience of trust and caring buoyed by faith, love, and hope.

PREFACE

I consider January 25, the day I was diagnosed with cancer, as my second birthday, my day to celebrate life and thank God for what He has given me. Some choose to celebrate the day they went into remission, and some don’t celebrate at all. I celebrate my diagnosis day because if that day had never happened, I wouldn’t be here sharing my story. I wrote my first cancerversary email in 2001, to celebrate my seventh year of being a childhood cancer survivor. I was about to turn 21 and I felt the need to go out into the world and share my good news. I wanted to celebrate life, God’s plan for me, the mysterious ways in which He works, and most importantly, remind others to celebrate their lives. Email and the internet were becoming more popular, and I had a way to share my good news with a wide range of people who had been with me throughout my journey. Every year since then, I have continued to write a cancerversary email on that day.

Over the years, the list of people who receive my email has grown, and many have encouraged me to write a book. I have always known that sharing my story could provide hope or inspire others, but I never considered myself a writer. Until now. I am a firm believer that everything happens for a reason. This book is no exception.

In 2016, my husband gave me the greatest gift: the gift to quit my job and follow my dream. For the first two weeks after I quit my job, the words just flowed. In a short period of time, I had the first rough draft of this book written. Then it came to a screeching halt. I hadn’t prepared myself for the emotions that came along with the memories. For a year, I wanted to work on the book but was too afraid to face the emotions again. Then I heard a former classmate had been diagnosed with breast cancer. I had to reach out to her. I knew the words in my book could offer her hope. Her diagnosis gave me the courage to open my book and start rereading some of the chapters. I was pleasantly surprised that even though the memories were there, the accompanying emotion had decreased. I was not only able to help her and her family, but I was able to move forward and finish writing my story. As I continued to write, I realized that my story is God’s story too. A story of His faithfulness, grace, and glory.

My journey wasn’t an easy one. I survived before the internet connected people and before organizations existed to help survivors. I want to show you how having faith in something greater and hope for a better future changed my life, and how it can and will get you through the hard times.

Life will always have its ups and downs, but it is how we respond to the highs and lows that shape us into who we are. Those who read this book will laugh, cry, and be inspired. You will gain a perspective on what a child (or anyone) diagnosed with cancer goes through. You will see how hope and faith are important keys to survival. Even though my journey wasn’t always easy, I would do it all over again, knowing I am here now, sharing it with you.

Chapter 1

Miracles Do Happen

Everyone has a defining moment in their life, a moment that changes the course of their life. I was 13 when I first experienced that feeling and my life changed. Up until then, I lived what I considered a normal life. I grew up in the suburbs, the youngest of three, without a care in the world. I dreamt of becoming a veterinarian, getting married, having two children and many dogs. I was happy living the life my parents provided me. Nothing prepared me for the path my life was about to take.

In November 1993, I was in the eighth grade at basketball practice. That night, I was kneed in the back while guarding a teammate. I immediately felt a sharp pain in my lower back and asked my coach if I could get some water and sit down. I walked to the drinking fountain and then sat on the bleachers waiting for practice to be over. When my mom picked me up, I told her what happened and about the pain. My parents assumed I had just pulled a muscle. I ended up staying home from school the next day because the pain was still there. I just couldn’t get comfortable.

A week later, my parents took me to see our family doctor to determine if there was internal damage since I was not getting better and continued to feel a sharp pain in my back. He took X-rays, but nothing showed up, so rest, heat, and aspirin were recommended.

For the next month, I dealt with the pain the best way I could. I didn’t swallow pills, so my parents crushed over-the-counter pain medication and I mixed it with a spoonful of sugar (Mary Poppins was wrong: a spoonful of sugar does not make the medicine go down). Crushed medicine tastes horrible, but because it was the same color as sugar, I only took a quarter of the crushed medication with the sugar. I didn’t tell anyone what I was doing. I didn’t want my parents to worry, so I pretended to feel better. I thought the pain was temporary and I could just live with it. Boy, was I wrong.

In December, I began sleeping in a recliner in our family room because I couldn’t lie down. It hurt too much to lie flat on a bed. When I was home, I lived in that chair. It was the only place I had some comfort, although the pain was still present. One night I felt better and decided to try sleeping in my bed. Big mistake. The pain escalated and I couldn’t sit up and get out of bed. Instead, I slowly rolled and then used the edge of the bed to stand. I knew something was wrong. I knew this wasn’t normal, and I also knew no one could tell me why I was in so much pain.

After playing in one scrimmage basketball game, I realized I had to quit the team. I knew I wasn’t going to be able to play. The pain was too severe. I had been playing basketball since the fourth grade; I didn’t want to give it up. I didn’t want the pain to win, but it did. I sat on my parents’ bed, picked up the phone, and called the coach. As we talked, I think he understood why I felt the need to quit, but I knew my teammates wouldn’t.

Basketball was the first thing I had to give up. A couple of weeks later, as I was helping my mom set up Secret Santa (the Christmas activity she organized for kids to shop for their family during school), the pain in my back hurt so bad I was in tears and just wanted to go home. Since my mom was in charge, she couldn’t leave to take me home, so I was stuck at school in unbearable pain and couldn’t do anything about it. Good thing God had other plans. Mr. Tonti, one of our neighbors and a coach at the school, happened to come down to the gym where we were setting up. I believe God sent him there so he could take me home. He was there so I didn’t have to sit in pain waiting for my mom to finish. I was heartbroken leaving and not being able to help with Secret Santa. It was a Christmas tradition and something I had been a part of since I was four years old. I didn’t feel I had a choice; the pain was now controlling my life.

I continued going to school despite the constant pain. My mom suspected the weight of carrying my books around all day might be the cause of my pain. At the time, my class had to carry all our books with us as we were not allowed to go to our lockers between classes. So, Mom weighed my book bag. She couldn’t believe it. I was carrying around 45 pounds of books. She talked to my teachers and they made accommodations for me. I was allowed to keep my books in the classroom, eliminating the need for me to carry them from class to class. I was also given an extra set of books to keep at home, so I didn’t need to carry anything home either.

This was the beginning of feeling set apart from my classmates. They didn’t understand why I received special treatment. They didn’t understand how severe my back pain was. All they knew was what I told them: I had a sharp, stabbing pain that moved to different parts of my back. One minute it would be in my upper back, the next minute in my lower back or in the middle. Then, I overheard a friend say, Real pain doesn’t move. It was at that moment I realized they thought I was faking. I couldn’t understand why they thought this, and unfortunately, I had no way to prove the pain was real.

Even my siblings didn’t believe the pain was real, or at least they didn’t believe the pain was as intense as I claimed. Being the youngest, my sister and brother viewed me as the baby of the family, the one who would cry to get what I wanted. Over the course of the month, my brother, Steven, went on with his life. He was a junior in high school and had other things to worry about. His younger sister getting kneed in the back at basketball practice and having back pain wasn’t one of them. Theresa, my sister, was a freshman in college, lived two hours away, and had no idea what I was experiencing. She came home from college for Christmas break to see me sleeping in a chair. I can only assume she thought my parents were babying me once again.

One day, when the three of us were upstairs, they pushed me into the wall to see if the pain was real. I fell backwards hitting my back on the doorknob of the clothes chute. I cried because of the pain it caused, but more importantly, I cried because I had no way to prove to anyone what I was going through. I just wanted people to believe me.

I tried to act normal because I wanted to feel normal. I wanted to feel included. What my family and friends didn’t know was that I was hiding how bad it actually hurt. It hurt to laugh, sneeze, move quickly, sit on the bus, sit in the car, and sleep in a bed. Everything I did caused me pain, pain I wouldn’t wish on my worst enemy. I never knew where the pain would be, and I never knew how intense it was going to be. The pain could go from a deep, aching pain to a sharp, stabbing pain at any minute. I took one day at a time and did the best I could.

I had countless X-rays, none of which showed anything wrong. Some suspected I had inherited a bad back since my dad and other relatives had bad backs. My parents just figured it was an undetected slipped disc or growing pains. I knew what I was going through wasn’t growing pains.

Come Christmas, all I wanted was a day without pain. Our family tradition was to wake up Christmas morning, open presents, eat cookies, and drive two hours to see our grandparents. I loved Christmas. It was and continues to be my favorite time of the year, but I was not looking forward to this particular Christmas. It hurt to be in a car for just 10 minutes, let alone two hours. The seats were uncomfortable and each time the car went over a bump, I felt a sharp, stabbing pain in my back. The only thing I prayed for was a day without pain. I didn’t care what Santa brought me; I was just tired of hurting.

Christmas morning, I got my first miracle: I woke up without pain. For the first time in two months, I could move freely. I could sit on the ground. I could twist and turn. I thanked God for the greatest gift I could have been given. I opened my presents with my family, ate cookies, and survived the two-hour drive to see my grandparents without pain. Christmas morning, I learned miracles do happen.

Chapter 2

The C Word

Sadly, the pain didn’t stay away for long. On New Year’s Eve, I was at my best friend Samantha’s (Sam) house celebrating. We spent the day together, and I did my best to have a good time even though I was miserable. The intensity of the pain started to become more consistent. I wondered why my pain had returned, if I would ever know the cause, and if something was seriously wrong with me. I was afraid the sharp, stabbing pain was here to stay. I did my best to hide how I felt. I did my best to cope. I wanted to be normal. I wanted to have fun with my best friend. I sat there shifting my weight while we played games, watched TV, and took pictures of one another with the Polaroid camera she got for Christmas. No matter what I did, I couldn’t find a comfortable position.

Just before midnight, the pain got so unbearable, I called my parents to come get me because I knew I wouldn’t be able to sleep on the floor at Sam’s house. I’m sure she was mad at me for leaving, but I just couldn’t stay. I felt horrible for letting her down. As much as I did not want it to, the pain ruled my life. Looking back at the picture she took of me that day, so pale and thin, I wondered how no one realized I was sick.

For the next couple of weeks, the pain continued to control my life, people continued to have their doubts, and I just lived with it. Then on January 12, everything changed again. At the end of math class, I reached under my desk to get something out of my book bag and couldn’t get up again. I was stuck hunched over. I tried sitting up, but I couldn’t. I couldn’t straighten my back. It was the most intense and excruciating pain I had felt. It felt as if someone had stuck a screwdriver in my spine, preventing me from