Part of my job since joining the UV Skinz team, has been to connect with influential advocates in the melanoma community. After some research, Susan Hayes popped up as a top blogger on melanoma advocacy, a direct result following the diagnosis of her daughter, Jillian, with stage IV Melanoma. Susan created the blog, Jillian’s Journey with Melanoma, shortly after Jillian’s diagnosis in September 2010, and has been sharing her family’s heartbreaking journey ever since. Almost 2 years after her diagnosis, Susan lost her daughter to melanoma in December of 2012 at the age of 23, and Susan chose to keep writing.
The week that I discovered Susan’s blog, she had shared a post titled “Siblings: The Forgotten Mourner…” In August of 2012 I unexpectedly lost my 25 year old sister, and Susan’s post hit home hard for me. Losing a loved one, whether a parent, child, sibling, friend, or partner, is often a confusing and unbearable time, and there certainly haven’t been any exceptions for me. After reading Susan’s post, I realized she had a very sincere and honest way of sharing the reality of her grief, and a unique way of connecting with others who may have experienced similar feelings. I contacted Susan to offer my condolences, commend her for her honesty, and ask if she would be interested in sharing her story with us again since losing Jillian, as her perspective and growth surely had evolved since her first My Story with us back in June 2012. Susan graciously agreed, and provided the below writing to be shared.
This is Susan & Jillian’s Story.
In July of 2009, at the age of 19, Jillian discovered a mole on her back that started to bleed. The mole was removed and sent off for testing. The results came back showing that she had stage 2 melanoma. A large portion of the surrounding area was excised, and two lymph nodes were removed. Results from the surgery showed the surrounding tissue and lymph nodes were clean, and free from cancer. Jillian and the rest of our family did not know at the time how dangerous melanoma is. We went about our lives, unaware of the ticking time bomb about to explode our world.
Until one year later, during a routine visit, her surgeon suggested a PET scan for Jillian. From that scan it was discovered that Jillian had a tumor on her liver, and two more small tumors, one on each lung. On September 23, 2010, one day before her 21st birthday, my daughter Jillian was diagnosed with stage IV Melanoma.
I will never, ever forget the day when Jillian met with the surgeon. We were there to discuss surgery where a large portion of her liver was to be removed. Jillian was sitting on the examination table with her boyfriend sitting next to her. Her siblings were in the room with her, crowding the room, ready to support their sister. The Dr. came in and looked at Jillian and said, “It will take a miracle for you to survive”. The blood drained from Jillian’s face, leaving her as white as a ghost. The room was silent except for the sniffing across the room as her siblings shed tears of disbelief. I was livid. I will never forget that day, and I will never forgive that Dr. for stripping Jillian of hope.. From that moment. I promised myself that Jillian would be surrounded by love, hope and inspiration.
After Jillian recovered from her surgery, we contacted a melanoma specialist at U of M where a brain MRI was ordered. The MRI revealed that Jillian had several small tumors in her brain. That started the treatment journey consisting of SRC surgeries, a clinical trial, and WBR. With each treatment Jillian went through, she handled it with grace and courage. Her motto was, “Fall Seven Times, Stand Up Eight”. She never gave up and she continued to live her life with zest .
On December 29, 2012, at the age of 23, Jillian completed her job here on Earth. We will continue to spread awareness and to shine the light that was evident in her life. In an effort to raise awareness of Melanoma, especially in young people and their parents, Jillian’s siblings and I have created a non profit organization, the Jillian Hayes Foundation. I also have a non profit called Jilly’s Jems. We are dedicated to educate and to spread awareness of this disease.
In an effort to honor Jillian and so many others that have been touched by this horrific disease, as well as to bring a face to melanoma, we started a billboard campaign across the state of Michigan, and in North Carolina. These billboards spotlight real people and their loved ones that I have had contact with through the melanoma community. You can read more about these efforts by going to my blog, If you are touched, and want to make a difference, please feel free to donate right from the blog. ALL donations go towards another billboard.
I wish I knew then the facts and risks surrounding melanoma. It is my hope and my family’s hope that other people will learn the risks of melanoma, tanning beds and the dangers of the sun. It is our prayer that we can save another family from the devastation of losing a child, and having to learn to pick up the pieces of a shattered life. My advice to you. Stay out of tanning beds. Please. Jillian was an avid tanner since the age of 14, and worked at a tanner where she had unlimited use. In Jillian’s own words, “Laying out and tanning beds, pretty much screwed me”.
Yes it did sweetheart. It screwed all of us, but you paid the ultimate price.