Stephanie’s Story – Childhood Cancer Awareness Month

Q: What has your experience been navigating childhood cancer survivorship?

I found adjusting from my active care team to long term remission check ups could sometimes be confusing when moving or changing insurance. Different systems meant switching providers entirely. Depending on the system, there is an insistence that pediatric cancer survivors remain being seen only through pediatric care facilities or not. This is mainly an issue in remission.

Navigating survivorship when I was actively being treated/recently on remission was often a struggle. For my dad who worked a six-day work schedule as a single father, accessing all my appointments was difficult. It disrupted my social identity amongst my peers, who were also kids that couldn’t always make sense of how I was different in a neutral way.

In the end, need overcame all. If that meant interrupting class part way through for early morning appointments, that’s what it meant even at the additional sense of isolation from my peers when walking around in face masks and my polka dot hat to cover my lost hair.

Eventually, I grew far enough through my treatment to no longer show visible signs of my survivorship and I no longer went to school only with kids that knew me as “Cancer Girl.” I had opportunities to show myself as a person instead of an entity, though I know some lack of socialization occurred in those key years in addition to the idiosyncrasies of my general upbringing.

Q: What is one thing you wish others knew/a common misconception about childhood cancer survivorship?

Your adult life and identity does not need to center around your survivorship/health diagnosis. Despite any continuing health check ups or long lasting health side effects, it is never all that you are.

Q: What is one piece of advice you would give to other childhood cancer survivors?

Continue to focus on what brings you joy and enrichment right now. From that, you can connect with others beyond just an identity as a cancer survivor and hopefully can grow your group of supporters while maintaining some good coping mechanisms.

I think maintaining community rather than shutting out the world during treatment is important for remembering the world hasn’t diminished to IVs, hospital staff, and white walls. Although we love and appreciate our care teams, we can not lose that connection to the outside world to our illnesses either.