Finding a Support Network: The MRF Lifeline

Most of us have had our struggles attempting to navigate the world of medicine. From working to make sure you meet with the right doctor to trying to understand the information given to you at an appointment, the healthcare system can be an overwhelming journey. This journey can be something simple, but for my younger brother, Steven Michael Bienz, the medical network became his second home and navigating this world was a fight for his life.

Steven was only 24 years old when he started losing weight. At 6’5" and only 180 pounds his weight loss was concerning but no one could give us a diagnosis. Shortly after his 25th birthday, extreme migraines were added to his list of symptoms. Life changed in May of 2016, when a migraine resulted in loss of vision and landed him in the emergency room. After a few tests the diagnosis was clear, Steven had stage IV metastasized melanoma. There were 34 tumors in his brain causing extreme swelling and “at least 60” throughout his body.

My mother, Karen, and I went into overdrive. I don’t think either of us can tell you exactly what happened during that first week in the hospital. While my mom stayed by Steven’s side, supporting him through the shock of his diagnosis, I went deep into the healthcare system to make sure he was receiving the exact care he needed. Many of our family members, myself included, work in healthcare here in Seattle. This meant we had vital knowledge and skills to not only understand the things we were being told, but were also able to advocate for Steven to make sure we were all on the same page with his healthcare team. We were able to get dual care through both Swedish Cancer Center and Seattle Cancer Care Alliance, with his oncologists partnering together to make decisions, start brain radiation within days of his discharge from the ICU, and have genetic testing done on a tumor biopsy to make sure his treatment plan was the correct course of action.

Despite all of this work, our network was missing something. We had a strong medical approach and loving friends and family around us, but still felt like we could be doing more. It was only after Steven texted me one afternoon we realized what we were missing, a community focused on helping families like us. “Have you heard of this group? Let's look it at later.” That group was the Melanoma Research Foundation.

The MRF helped each of us in our own way. For Steven, he read stories of other people across the United States like him. These stories gave him ideas of questions to ask his providers, different symptoms to be on the lookout for, and more than anything, hope. For myself, the MRF helped me to direct Steven’s healthcare in a way that was more meaningful for his specific needs. For our mother, the resources for caregivers was a lifesaver. The MRF gave each of us bits of information, ideas, and support that we needed to create a network that made us stronger as a family.

After reading about Miles for Melanoma, Steven, Mom, and I decided to take a trip to San Diego for their 5K in November 2016. It is the event closest to our home in Seattle and Steven was excited about meeting other patients and families. Unfortunately, he never made it to San Diego. He passed away on October 13, 2016 surrounded by friends and family. I knew that our trip was important to Steven, that he would want my mother and I to go and help patients and families with our story and fundraising. It was one of the hardest trips we have ever taken, but on November 13th, exactly one month after Steven’s passing, Mom and I crossed the finish line together at our first Miles for Melanoma event.

The Melanoma Research Foundation has continued to support our family. We have a team at the San Diego Miles for Melanoma event each year and are working with the MRF team to expand their efforts up to Seattle, partnering with the many outstanding healthcare systems here. My mother and I will also be attending the Advocacy Summit and Hill Day in March and continuously tell our friends and family to “Get Naked”. Through fundraising, advocacy, education and even telling our story, Steven’s life was changed by the MRF and we hope to continue this work, helping others find the support network we all need.

Guest blog post by Steven's sister, Danielle Bienz, a powerful example of what it means to be #StevenStrong and a dedicated advocate for those who are facing melanoma. MRF events, support resources and the cutting-edge research that will lead to cure are made possible by the generosity and commitment of our community. Please consider a tax-deductible gift today!