EP01 – The Sunshine In The Storm with Rare Cancer Mom & Advocate Stacey Walthers Naffah
Stacey Walthers Naffah is a Director of Children’s Hospital Wisconsin’s Foundation Board, a childhood cancer advocate, and a rare mama to Cate. At the age of eight, Cate was diagnosed with ewing’s sarcoma, an extremely rare cancer with fewer than 1,000 cases per year worldwide. Stacey bravely shares their journey, starting from Cate’s diagnosis to creating The Sunshine Squad charity to help other children battling cancer. This episode offers invaluable advice to both parents who are new to the rare disease world and those that are further along on their path. Check out the important lessons Stacey learned while fighting for Cate’s health, from “being in the eye of the hurricane,” to finding sunshine in the storm.
Episode Highlights
How did your rare disease journey start?
Our story started when my daughter was 8 years old. She was complaining of pain in her calf and was having a hard time sleeping. The pediatrician referred us to a sport’s medicine provider for two weeks of PT. Very soon into the PT, the pain worsened and began traveling up her leg, over her back and down the other leg. After two weeks, we had x-rays which showed a lightning bolt in her sacrum and we went on to have an MRI. We learned from the doctors that they saw a cancerous process occurring. She went through two challenging surgeries and confirmed she had a very rare cancer called ewing’s sarcoma.
How have you had to push beyond your fears and capabilities through this journey?
It’s a series of instances, big and small. One instance that comes to mind is in the beginning when we were pushed to start treatment almost immediately while we were in a surgery to put my daughter’s chemo port in. We thought we’d get the port placed, talk to our doctors to lay out the plan and have a couple weeks to regroup before we started treatment. During the port surgery, we had to decide on starting treatment right away. We moved straight from surgery recovery to cancer treatment. It was shocking and it left us wondering if we had made the right decision to start treatment right away or if we should have explored the clinical trial.
Where do you find hope?
One of the places I found the most hope was in the way my daughter looked at me. She looked at me like I knew what I was doing, with such hope in her eyes that I was going to figure this out. I found so much hope in my daughter’s resilience and fighting spirit. My faith is also important to me and knowing there was something to be learned from the journey was powerful for me personally. Other families and other moms like me provided a lot of hope through hearing their stories and how they were evidence that I was capable of more than I thought I was. Honestly, I looked for hope wherever I could find it— the sunshine in the storm.
How are you using your experience to help other parents on similar journeys?
I think it’s important and powerful to have one-on-one conversations, listening, to give advice and talk through the fears, concerns and lessons learned. I have an unbelievable network of people around me and we all help each other. We started a charity called the Sunshine Squad, which creates hospital room decorating kits and other fun things. We create drives and deliver the kits to Children’s Hospital of Wisconsin, where my daughter was treated. Through advocacy, I was invited to be part of the Children’s Wisconsin Foundation board and I’m really proud of the work being done.
What’s the best piece of advice you have for a mom with a child who has been newly diagnosed with a rare disease?
Take a deep breath, center yourself and know that you’re indeed capable of so much more than you think. Take help from others, articulate your needs, shield yourself from unproductive people and emotions and find your people. Focus on taking care of yourself so your own health doesn’t suffer, both physical and mental wellness. Trust your gut- you know your kid.
