If anyone would have asked me 10 years ago if I would be involved with a program discussing my childhood cancer, I would have laughed. In fact, I would have probably rolled my eyes, too.
As a teenager, I was diagnosed with stage II alveolar rhabdomyosarcoma, a cancer that forms in the soft tissue. Three years later, while in remission, I was given the news I had cancer again, but this time it was chronic myeloid leukemia, a blood-cell cancer that begins in the bone marrow. After years of treatment, I’m cancer free and those memories of my cancer treatment just became part of my past and something I wouldn’t talk about. Except I couldn’t escape it – randomly I’d see a scar or get a flashback and it would trigger something inside me.
These were feelings I couldn’t explain. Emotions I couldn’t articulate.
Then Valley Children’s asked me to participate in the Valley Children’s Childhood Cancer Survivorship Program’s PhotoVoice project with four other childhood cancer survivors. Together, our group selected themes and then each week, we went out and took photos that represented what those topics meant to us and how they related to our treatment and life after treatment.
Initially, it was difficult. It involved reliving some of my hardest days. I walked into this project feeling like I was the only one who has my experiences. But then people all started sharing their stories and opening up about really personal things. I remember walking out to my truck after the first sessions and just sitting, taking it all in. Sharing began to feel like therapy because I felt a sense of relief each time we all met. I realized there are other people out there who are having those same feelings or fears and being able to sit with a group of people who have gone through something similar was a benefit I never anticipated.
Ultimately, this experience made me excited to share my story because I recognize it might help others see the benefit of talking about their own cancer journey. At the end of the day, I learned that it’s one thing to be done with the treatment – but that doesn’t mean you just move on with your life. More than the physical experience, you have to consider the mental side. There are side effects and scars you may never physically see. When you’re a teenager diagnosed with cancer, you’re sitting there at 16 or 17 dealing with literally, life and death. It’s hard to wrap your head around, even after you’re told you’re physically better.
So why am I sharing this story? What is my goal through participating and talking about this PhotoVoice project? Simply two things.
The first, to share my story. I want children who are diagnosed with cancer and their families to know there is hope and there’s a whole life ahead.
The second is to share that this Childhood Cancer Survivorship Program exists! We have one of the best children’s hospitals in the world right here, performing miracles and saving kids’ lives, and I’m one of them! It’s a program that meets a need not many people realize exists. It’s a program that changes lives. It’s a program that provides hope.
by Scott Regnerus
To learn more about the Valley Children’s Childhood Cancer Survivorship Program and the PhotoVoice project, visit valleychildrens.org/survivorship.