700 Children's® – A Blog by Pediatric Experts

5 Things I’ve Learned as a Cancer Survivor and Physician

Sep 29, 2020
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When strangers ask me what kind of doctor I am, and I explain that I am training to be a pediatric hematologist-oncologist, the usual reaction is, “That is so sad. I’m glad you can do that.”

We all have our own reasons for being in health care. For me, it’s personal. I was diagnosed with high risk B acute lymphoblastic leukemia at 11 years old. My diagnosis followed a mostly healthy childhood, but in the few months prior I experienced unexplained weight loss, abdominal pain, a severe case of chicken pox, and persistent sinusitis and bronchitis with cycling fevers.

Two weeks of blood work and X-rays did not reveal the reason for my illness; a bone marrow biopsy finally explained my change in health. The diagnosis was a shock - childhood cancers did not run in my family. With my health history, no one expected that I would have such a diagnosis.

Our world was turned upside down with this diagnosis, and I’ve learned this is a typical story for childhood cancer patients and their families. I’ve learned a great deal as a patient, survivor, friend, and physician.

I’ve learned that childhood cancer is more common than I had previously realized. We often think of childhood cancers as “rare,” and compared to the incidence of cancers in adults, they are. Adult cancers, by definition, have a wider age range and much more time for their DNA, the substance in cells which serves as the blueprint to make every part of a person, to gain multiple mistakes, leading to cancer.

Childhood cancers collectively comprise the number one disease killer of children, falling right behind accidents, homicide, and suicide in the top causes of death. In fact, 1 in every 285 children is diagnosed with cancer in the United States, which averages about 43 children diagnosed each day. The cause of many childhood cancers remains unknown, as opposed to adult cancers, where we’ve been able to more frequently identify risk factors.

I’ve learned how isolating and disruptive cancer is to the lives of the child and their family. Having been an adolescent at diagnosis, I was well aware of the distress it caused. My mother locked herself in her room for a few days, so she could cry alone. My younger sister did not understand the seriousness of the situation but knew it was scary given the reactions of our parents. My older sister coped by avoidance. My dad did his best to portray a face of confidence to encourage our family.

I felt like my life had been abruptly put on hold: while my peers were still attending school, I was attending chemotherapy appointments and brain radiation treatments. It took four months to achieve remission. When I finally returned to school during my second year of treatment, I felt like an outcast. Although everyone was kind, I was viewed as “the girl with cancer.”

The financial stress of my mom taking family leave along with insurance complications added additional strain. I understand when I interact with families that these factors are all in play, and I don’t take it personally if they seem short, frustrated, or emotional.

I learned from one of my favorite nurses that healing is more than simply a physical phenomenon. It is also accomplished by relating to others through our stories and having our experiences, emotions and suffering understood. This nurse’s name was Heather, and she was also a childhood cancer survivor. When I was hospitalized early on in my treatment, feeling alone, she shared her story with me. Her being able to understand what I was feeling helped me to begin healing.

This powerful phenomenon has demonstrated itself in my training and career when I share in the frustration, sadness and suffering that come along with being a patient or family member of a sick child. This level of understanding makes a huge difference in one’s healing and their willingness to share and heal. This phenomenon is what comes to my mind when others voice despair over my career choice—as I know not all is lost, even when we cannot provide the cure we so deeply want.

I learned that most childhood cancer survivors incur long-term side effects and severe, disabling, or life-threatening chronic health conditions from the same treatment that saved their lives. More specifically, they experience over twice the burden of chronic health conditions (some of which will be serious, disabling, life-threatening, or fatal) compared to the general population, by age 45 years. These conditions include early onset heart disease and dysfunction/failure, secondary cancers, infertility, learning disabilities, lung disease, and early onset dementia, to name just a few. Sadly, my favorite nurse Heather suffered this fate, dying of a secondary cancer while I was undergoing treatment for my primary cancer. I have been secondarily affected, too: during my third year of medical school, I experienced repeated brain hemorrhages from a radiation-induced abnormal blood vessel brain tumor. I ultimately underwent brain surgery to remove the tumor, to avoid developing a seizure disorder and further brain damage. My life was again on hold while my peers moved on, as I required medical leave from medical school for my recovery and brain rehabilitation.

I’ve learned the ongoing impact of bereavement on surviving family members after a child passes away. The void in those left behind is especially magnified when we lose a child, as those who loved that child imagined a lifetime of typical milestones and achievements that will not be. I try to make sure bereaved parents know how special I think their child was, or how I will always remember them. Again, another aspect of healing is accomplished by sharing our stories—which includes both the happy memories, as well as validating the sad ones.

My experience motivates me at my core. I want to be the best physician I can for patients and families who suffer from these diseases and to advance the field so that treatments are more effective and, eventually, with fewer long-term side effects. I want every child to be able to achieve and experience the joyous life milestones I’ve been fortunate to enjoy.

I chose Nationwide Children’s Hospital for my hematology/oncology fellowship based on the large number of patients we serve, the level of expertise our physicians have, and the research opportunities to help improve treatments for childhood cancers and blood disorders. I am humbled and grateful to work among other dedicated physicians and scientists who share the same goals, actively tackling in-depth, complex challenges in the research of childhood cancer and blood disorders. I look forward to seeing the amazing advances in this field, along with better outcomes for our patients and their families.

Hematology, Oncology and BMT at Nationwide Children's
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Featured Expert

Hematology Oncology BMT Fellow
Ashleigh Kussman, MD
Hitchcock-Wilson Fellowship

Ashleigh Kussman, MD, is a pediatric hematology, oncology and BMT fellow at Nationwide Children's Hospital. She graduated from University of Toledo College of Medicine and completed her residency at Johns Hopkins All Children’s Hospital.

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700 Children’s® features the most current pediatric health care information and research from our pediatric experts – physicians and specialists who have seen it all. Many of them are parents and bring a special understanding to what our patients and families experience. If you have a child – or care for a child – 700 Children’s was created especially for you.