Andy was diagnosed with bladder cancer when he was 15 months old and has been cancer-free since 1989. Passionate about issues related to justice and equity, Andy is an educator who lives in Indianapolis, Indiana with his wife Brittany and dog CJ.

Andy Seibert

I remember the sensation like it was yesterday. The adrenaline was coursing through my body as I swooshed down a slope in southern Michigan, downhill skiing for the first time. I was 13 years old, in the seventh grade, on a ski trip with friends that were part of our school’s German club. As I reflect almost 20 years later about why this moment remains one of my most vivid memories from childhood, two things come to mind. The rush, the feeling of being alive, that accompanied learning how to ski was undeniable, but the more powerful emotion that I recall feeling was gratitude. In that moment, surrounded by friends and experiencing something close to pure joy, I clearly remember being filled with a new depth of appreciation and love for my mom.

My mom, Rin, and I have many things in common, from shared interests to our mutual love for back scratches and sports. In the midst of all of the things that tie us together, it’s been what many would consider the most challenging shared experience a mother and son can have — facing and surviving cancer – that has been a defining feature of our relationship and ultimately one of the most overwhelming blessings of life.

My mom was diagnosed with breast cancer in 1986, right after my first birthday. As a 33-year-old mom of two boys under 4, I can’t imagine the fear and stress she must have felt and I am blown away when I think about the depth of strength and grace it must have taken to go through treatment. After a year of quality care and radiation treatments, she was cancer-free. To celebrate, my parents decided to take my brother, Chris, and I to Disney World. Shortly before we were scheduled to go on the trip, I had a check-up with our doctor. During the visit, blood was found in my urine and led to the ultimate discovery of rhabdomysarcoma, a very rare type of bladder cancer. Because of the uncommon nature of this specific type of cancer, my parents had to work with doctors at Children’s Memorial Hospital in Chicago through various approaches to my treatment until, after over a year, a preferred treatment path became clear. After two-plus years of intense chemotherapy and radiation, I emerged cancer-free and both my mom and I have lived that way for the past 29 years.

Being so young, I don’t have any memories from my treatment; however, I know that my mom and dad spent endless hours shuttling back and forth to the hospital, and lived through the inevitable stress and trauma that go along with having a child face cancer treatment. Despite how challenging this had to have been for my parents, the stories they have always shared with me from this period are characterized by love and hope. My parents’ community and church rallied behind them and provided support for me and my brother. Family and friends generously gave their time, money and literally their blood to ensure that I had a chance to live. And more than anything, their faith sustained our family and delivered us another miracle.

Over the years, my mom has spent countless days with me at follow-up doctor appointments. The hours driving to Chicago or waiting in lobbies have often been when we have had some of our most meaningful conversations. We’ve had serious discussions that have ranged from the uncertainties of potential long-term effects of my treatment to major life decisions about career and starting a family. We’ve had hilarious experiences, like the time we got locked in a stairwell at Northwestern Hospital, and always find ourselves laughing. More than anything, these moments have underscored how powerful the bond of our shared experience of having cancer is, and how much it has strengthened and deepened our relationship and friendship.

As a mom, wife, leader and friend, she is always finding ways to invest in others. One of the most powerful things I’ve observed her do consistently over the years is step up when friends or family find themselves going through cancer treatment or providing care for their loved ones facing cancer. I’ve always reflected that part of what drives my mom to live this way is that she experienced the impact of others selflessly pouring into her, both during her cancer treatment and mine. Her example sets the bar and motivates me to always give more, focus on others and not be afraid to step up and support others facing cancer or other challenges.

I felt a new depth of gratitude for my mom in that moment on the ski slopes because I realized I was only able to experience the intensity of skiing for the first time because of her fierce perseverance and unconditional love. Over the years, as I’ve experienced more memorable moments, I’ve often found myself in these instances filled with the same, powerful gratitude for my mom. No one would ever wish that a mother and son would have to share the experience of having cancer. However, for me, this common part of our lives has been the ultimate gift, deepening our friendship and strengthening an already-unbreakable bond.

Articles

In the midst of all of the things that tie us together, it’s been what many would consider the most challenging shared experience a mother and son can have – facing and surviving cancer – that has been a defining feature of our relationship and ultimately one of the most overwhelming blessings of life.

Survivorship's Gift to a Mother and Son

Karen Kinahan, D.N.P., APN, FNP-BC, and Andy Seibert - PHOTOS BY ANNIE HILL

ON A COLD JANUARY day in 1987, only one week after completing her own radiation treatment for breast cancer, my mom went to change my diaper and knew that something was wrong. After several appointments in the following weeks, I was diagnosed at 15 months old with rhabdomyosarcoma of the bladder, which at the time was a very rare form of cancer. Shortly after my diagnosis, I began treatment at Children’s Memorial Hospital in Chicago.

Being so young at the outset of my diagnosis, I obviously have very little firsthand recollection of the journey and numerous challenges that my family and I went through on the path to being cancer-free. However, through the years, as my parents have shared stories and details of the agony, trauma and ultimately the joy that were consequences of my diagnosis, one thing that constantly stands out is how blessed I was to have the support and care of many phenomenal doctors and nurses. During the three years of my treatment and the countless follow-up visits over the past 28 years, one person in particular has been a special and constant force of love, support and reassurance for my family.

In 1987, Karen Kinahan was a young nurse who had recently graduated from Valparaiso University. My mom worked at the university and formed an instant connection with Karen. Something that was immediately evident to my family was that Karen was an exceptional nurse who loved children genuinely, and went above and beyond to be a source of encouragement in the midst of challenging treatment. Karen always took the time to support not only the patient but also the entire family who were impacted by the disease. Her patience, empathy and willingness to listen and provide a wealth of knowledge and guidance were invaluable for my family.

Following the three years of intense treatment, my cancer was gone and I have been cancerfree for the past 27 years. Thanks to the care of Karen and the world-class medical professionals at Children’s Memorial Hospital, I have had the opportunity to grow up a happy and healthy child, teenager and adult. Throughout my life, Karen has remained a constant source of support. In the years immediately after my treatment, Karen worked with the long-term clinic at Children’s, and then years later moved to Northwestern Hospital to work with the adult STAR clinic. I was thrilled, when I transitioned my care after I graduated from college to Northwestern from Children’s, that my favorite nurse was there to continue to support me and my family.

As I have grown older and faced numerous potential long-term effects of my treatment, Karen has been there at every step of the way to listen, support and advocate for my healing. In my early 20s, I began to grapple with the serious potential heart health consequences I could deal with as an adult due to the type and amount of chemotherapy I received during my treatment. The more I learned, the more scared and uncertain I felt. However, Karen was there to reassure me and advocate that I connect with a world-class cardiologist at Northwestern. In my late 20s and early 30s, when my wife and I started our family planning process, we knew that there would be tremendous uncertainty about the path we would have to take, and Karen has once again been there to help us through the process.

One thing that I reflect on when I think about Karen is that the lasting, positive influence she has had on me and my family is a small portion of the total impact she has had on the countless number of patients and families she’s worked with over the years. Karen has never stopped learning and improving, and has expanded her knowledge through advanced degrees and research. From my personal experience and from observing her from afar, it is clear that her commitment to patients and to improving the quality of life for cancer survivors is steadfast.

Today, I continue to live a full, happy and healthy life. I have a beautiful wife and a rambunctious puppy, a house my wife and I built and a job that I love. Being a cancer survivor is something I am immensely proud of and is a major part of my identity.

At the same time, I know that the long-term impact of my treatment will not be without its challenges, and I am comforted knowing that Karen will continue to be there for me. Over time, my family has started to consider Karen a part of our family. Karen and her husband attended my wedding five years ago, and I always look forward to sharing the joys and challenges of life with her. Next month will mark 30 years since that cold January day when my mom found what would ultimately change the course of my life forever. To mark the occasion, I will make my annual visit to Northwestern’s STAR clinic. Karen will be there, just like she always has been, and I know I’ll be in good hands

An Extraordinary Healer essay honoring KAREN KINAHAN, D.N.P., APN, FNP-BC
[ROBERT H. LURIE COMPREHENSIVE CANCER CENTER OF NORTHWESTERN UNIVERSITY, CHICAGO, ILLINOIS]

Andy Seibert

Survivorship's Gift to a Mother and Son

A Lifetime of Impact for Patients With Cancer

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