In January 2022, our lives took an unexpected turn when our seven-year-old son, Gavin, was diagnosed with Metastatic Ewing Sarcoma. This is when our journey at Nemours Children’s Hospital in Delaware began. Under the care of pediatric hematologist/oncologist Dr. Powell and pediatric orthopedic surgeon Dr. Thacker, Gavin underwent a challenging treatment of chemotherapy, radiation, and ultimately a below-knee amputation.
Treatment was extremely taxing on our family—both emotionally and physically. Thankfully, the care was wonderful. Not only did they support Gavin’s specific health needs, but they provided both compassion and laughter. The nurses always made us smile. Dr. Powell and NP Lauren provided excellent care, and Dr. Thacker, another important piece of the puzzle, was the very first person to hug us after diagnosis.
But what happens when treatment is over?
It’s a unique, emotional but also numbing experience—all at the same time. Kind of like leaving the hospital with your newborn. “What do we do now?”
Now, at the age of nine, Gavin has completed his treatment. He just had to have revision surgery to his amputation, but is excited to get back to walking again soon. We live our life in 3-month increments, following Gavin’s scan schedule. As a parent, I’ve learned through Gavin’s journey that being off treatment, in some ways, is as hard as being on treatment. One day, you are forced back to being “normal,” while nothing in your world has ever been less normal.
The purpose of me writing this is to shout from the rooftops that there is NO RIGHT way to cope after treatment. We—as parents, as patients—need to give ourselves permission to do what feels right.
From my experience and conversations with other “Cancer Parents,” here’s what I’ve learned:
- Embrace the New Normal: The first few weeks off treatment feels surreal. You’re “forced” to go back to living a normal life after you and your family have gone through something so difficult. Life may never be the same as it was before diagnosis, but is that necessarily a bad thing? Could we potentially have earned a new perspective on life that will allow us to be more grateful and observant? I find myself taking more trips, spending more time with my family, and cherishing more moments than I previously had. Even on our “normal days”—there is beauty and gratitude for being able to complete mundane tasks like laundry. I try to remember that on the bad days.
- Managing Stress: One day your child will be ready to go back to school. And then they’ll catch a cold and have a fever. The first time our son had a fever post-port, we looked at each other like, “What do we do?” Remember that your medical team is still there. If you have questions, ask. Lean on people to support you—especially other parents in our community. Ask your school for help before your child transitions back. And, of course, take time for yourself (easier said than done, of course).
- Coping is Personal: I’ve learned from my other “cancer moms” that everyone is different. You can choose to give back to the community or your hospital. You can choose to join and communicate in support groups. I do a mix of both. There are days we are helping fund a pediatric cancer research grant in Gavin’s honor. But then, there are days where I’d love to pretend like cancer doesn’t exist. Check in with yourself and follow your own lead.
- Celebrate or Not: You can choose to celebrate the milestones or not. Again, you need to do what works for you. Do not feel pressured to visibly show gratitude or mark occasions or actively check your Facebook’s “memories.” Whether you choose to celebrate every milestone or prefer not to, it’s your journey; there is no right or wrong way to navigate this.
Closing thoughts:
A fellow cancer parent told me “one day, a cold will really just be a cold.” I hold onto this. Coming from a parent of a child off treatment just a hair over a year, I can say that it does get easier. But I can also say there are hard days, too. On the good days, I’m grateful for a messy house, a sink full of dishes, and homework. And on the bad days, I lean on those I need to for support or schedule a fun trip for our family.
Coping will vary from person to person. But the one thing we can all agree on is that when you’re faced with something as traumatic in life as this, it gives you a new perspective on life. And no one can take that away from you.
