The Impact of My Cancer Experience
I’m a cancer survivor. I’ve never actually put that statement on paper before.
I was diagnosed with an early stage breast cancer just as the country shut down due to the pandemic. As if the diagnosis alone wasn’t stressful enough, the timing created even more anxiety. I was lucky. I knew my prognosis was excellent – I just had to get through the process. A lumpectomy, a short course of radiation, and hormonal therapy.
I’ve worked in the world of cancer for thirty years, doing public policy and patient advocacy at the American Society of Clinical Oncology (ASCO), as a consultant to the Cancer Support Community and the Children’s Cancer Cause (CCC), and now full time for CCC. But those 30 years dealing with cancer on behalf of others – while incredibly rewarding in so many ways – still didn’t prepare me for learning about my own diagnosis and all that followed. I had worked in this world for so long and had access to the best resources – people and information -- but was still thrown for such a loop. Even with all I knew – or thought I knew – it didn’t prepare me for the jolt and ensuing emotions of going through the experience myself. And I was mostly by myself because of the pandemic – family members or friends gave me the emotional support I needed but couldn’t physically hold my hand or give me a hug through the entire process.
I still don’t know and can’t fathom the heartbreak of having a child diagnosed with cancer, but my own experience has changed my perspective and my work in profound ways. How I interact with those seeking information and resources, and the programs and services we create have a new meaning and urgency. We have been laser focused on fostering public policy that advances the discovery and development of new treatments for childhood cancer patients and survivors, ensuring that the patient experience is at the center of those efforts.
Before joining Children’s Cancer Cause full-time, I was privileged to play a role in the first ever pediatric cancer-focused Food and Drug Administration (FDA) Externally Led Patient-Focused Drug Development conference. We took on this challenge as a way to shine a bright light on the medical, social and emotional needs of survivors, and take the case directly to those involved in pediatric drug development. The CCC-organized conference on chemotherapy-induced hearing loss in pediatric cancer, brought together patients, survivors, caregivers, and clinicians to share with senior FDA officials and other key stakeholders, the perspectives of people living with chemotherapy-induced hearing loss, how it effects their daily lives, and their expectations and priorities for current and future treatments. The impact of the patient and caregiver experiences shared during the conference was powerful and highlighted the need to examine the risk/benefit analysis differently for pediatric cancer therapies, to reduce toxicities during treatment as well as to reduce or prevent late effects from treatment.
This experience drew me to become CCC’s Director of Programs and Operations in 2020, just months before my cancer diagnosis. My new perspective as a survivor is reflected in the programs of CCC’s Stewart Survivorship Initiative, components of which are intended to improve the survivorship journey of those affected by childhood cancer. We work daily to develop programs that highlight the life-long needs of survivors as they deal with many serious, chronic, and often life-threatening health conditions as result of their cancer and its treatment.
Children’s Cancer Cause commitment to these issues include the Survivorship Champion’s Prize, launched in 2020 to recognize organizations or institutions making significant advances in programs and services to provide life-long health maintenance for survivors of pediatric cancers. The award recognizes the importance of the unique challenges associated with the post-treatment services for these survivors, especially as they transition to non-oncology adolescent and/or adult health care services. We also work closely with our Board of Directors and Survivorship Advisory Council, which include pediatric oncologists, parents of survivors, survivors, advocates, and other survivorship experts who provide guidance on our programs and advocacy efforts to meet the needs to childhood survivors and parents. We are creating new and innovative programs to provide education and resources to address the enormous challenges pediatric survivors face throughout their life, and to ensure that the patient, survivor, and caregiver voice is reflected in all that we do to address those life-long challenges.
My entire professional career has been cause-oriented, working for non-profits advocating for basic biomedical research, clinical research, and patient care, and I love my chosen career path. I feel like I’ve made a difference in some small way. But being a survivor makes my work with Children’s Cancer Cause even more meaningful. I’m at an age that I’m much closer to retirement than I like to admit, but my experience has given me a new resolve in my work on behalf of children with cancer and their families.