In April 2014, doctors found a mass in Joe’s left kidney. Two months later, he was formally diagnosed with metastatic Ewing sarcoma. After he recovered from surgery to remove his kidney, we moved to chemotherapy. When chemotherapy finished, Joe had scans and we went to his appointment to discuss radiation. We were blindsided when Dr. Staddon said radiation wasn’t necessary after all. Confused, we looked at each other. Joe asked, “Well, what do we do next?” Dr. Staddon smiled wide and said, “Go home and live your life.” Such glorious words! The elation of that moment sustained me for about 48 hours. Then I completely crumbled.
For 11 months our lives were scheduled and dictated by cancer. As a single mom, my time had been sharply divided between staying on top of Joe’s treatment, the needs of my youngest son Zack, working full time, handling billing issues, updating friends and family, etc. Having the safety net of constant attention and structure from weekly appointments with our oncology team so swiftly removed and being released back in a world I no longer recognized nor fit into anymore was startling and scary. End of treatment meant the end of actively fighting cancer, but also the beginning of actively fearing its return. It meant meeting new specialists to handle side effects of treatment. It meant scans and balancing between hope of stability and terror of relapse.
All the maybes, what ifs and the darkest of fears so carefully shoved away from my mind during treatment came forth in one incredulously overwhelming jumble of emotions. A song, sight or thought would cause my throat to close and eyes to fill. Dreams played out scenarios I refused to acknowledge when awake. Any sign of pain or illness in my boys brought panic.
Some would tell me I should just be grateful my son survived. (Of course I was!) Some would say I was being a defeatist, fatalistic, negative or ungrateful if I acknowledged negative aspects of treatment and its aftermath. In desperation, I confided my private shame in a few others who have walked this walk before me. They shared their own experiences and I learned the struggle to lead to a normal life after treatment was actually, well, pretty normal.
I was wholly unprepared for the emotional battering and am beyond thankful for those who helped me through to the other side. I pay it forward by reaching out to others. Every family touched by childhood cancer has a story that is uniquely theirs. Yet, we share the experience of living a life completely overturned, then overturned again (some of us more than once). This binds us together in an unbreakable bond of love, pain, familiarity and understanding. Having the ability to speak freely and share the threads of commonality that run within our community is incredibly humbling and cathartic.
Eventually we all find our way. It just takes time and remembering to treat ourselves with the same compassion, understanding and kindness we extend to everyone else.
Written by Susann Simpson
Susann Simpson is the mother of two young men, Joseph and Zachary. Joseph is currently undergoing treatment for his second Ewing sarcoma relapse and learning to live as a paraplegic. She balances her time between family, friends, work, cancer treatment demands and cherishing the beauty and humor that surrounds us in our daily life.