Rare Disease Day: Ross’s Story

Guest blog post from April Muhlbauer, MRF advocate and mother of a 13-year-old pediatric melanoma warrior.

“I didn’t know anything about melanoma or skin cancer before I got it. I didn’t think I would ever get cancer. I want kids and adults to be aware and know about skin cancer so they can do things to prevent it from happening to them. I want people to know about my cancer and learn from it to protect themselves.”
– Ross Muhlbauer, 13

No parent should ever have to hear, "I'm so sorry, your child has cancer. We'll do everything we can." Ever since we heard those words on Sept, 14, 2016 our family's world has been flipped upside down. Pediatric melanoma is rare, but on the rise. About 500 kids are diagnosed each year in the US. We immediately searched for other melanoma families to connect with and came upon the Melanoma Research Foundation. The MRF has been a wonderful source for us as Ross continues his fight and we feel called to volunteer for this wonderful organization that has helped us so much.

Our son, Ross, was 11 years old when diagnosed in September 2016 with Stage 2b melanoma on the back of his ear. Ross had successful surgery and reconstruction and a negative lymph node biopsy showed the cancer had not spread. In July of 2017, our fears were realized as a lump on his neck was diagnosed as metastatic melanoma that spread to his lymph nodes, now stage 3C.  Ross had a full neck dissection and is now in his year long adjunct immunotherapy treatment. Ross has amazing medical teams at both Moffitt Cancer Center and Blank Children's Hospital working together to get him the very best care. He never complains, never asks "why me?", no pity parties here. Ross is pretty cool.

When the opportunity came up for us to volunteer for the Melanoma Research Foundation Advocacy Summit and Hill Day in Washington DC, on March 3-5 we knew this was something we had to do. We feel a calling to share Ross’s story, spread awareness and advocate for change in laws to protect others. We are living this fight right now and want to use that fight for good! Melanoma is not JUST skin cancer and we will fight for our son and each and every melanoma warrior.

Pediatric melanoma affects approximately 500 children in the US each year. The MRF is strongly committed to advancing research, increasing awareness and supporting these young warriors and their families. Wednesday, February 28th is Rare Disease Day and a great opportunity to further this work by making a tax-deductible gift to support warriors like Ross and all those fighting melanoma.