March 5, 2019 | Marianne Banister, Claire's Mother
Claire’s Story
No worries, they said. “Kids don’t get melanoma.” They were wrong.
The Melanoma Education Foundation thanks Marianne Banister and the Claire Marie Foundation for sharing Claire’s Story. Recently, the Melanoma Education Foundation and the Claire Marie Foundation began a partnership to dispel the rumor that “Kids don’t get Melanoma.”
In 2011, we considered ourselves a typical a family of four, running here and there, caught up in the dramas of life. Our two beautiful, healthy and happy girls were busily immersed in life. As parents, we were preventative in healthcare. Our girls were screened by a dermatologist annually since the age of two, lived in sunscreen and never tanned. That summer, Claire was a regular 14-year-old, looking forward to her freshman year of high school, her blue eyes sparkling in excitement at all the possibilities. Then we blinked and it all changed.
A mole — one that had been on her ankle since the day she was born — suddenly looked “different.” Its removal was delayed by the plastic surgeon’s office. No worries, they said. “Kids don’t get melanoma.” They were wrong. Nearly four months later the call came: Our darling 14-year-old girl had stage 3a malignant melanoma.
How did this happen? In short, Claire simply became a teenager. Hormonal changes, which routinely occur in puberty, prompted development of melanoma in our daughter; a risk we never knew was possible. More specifically, it turned out elevated levels of TSH linked to her adolescence induced hypothyroid condition was the direct link. Dr. Julie Ellerhorst of University of Texas MD Anderson Cancer Center, who discovered the link between TSH and melanoma, found Claire’s mole of origin had a very high receptor to the TSH hormone. Dr. Ellerhorst estimated that link thus allowed the elevated levels of TSH to feed melanoma development in our daughter.
Read Dr. Ellerhorst’s research Human melanoma cells express functional receptors for thyroid-stimulating hormone.
We were blindsided by her diagnosis, yet Claire and the rest of our family accepted no option but success. We were on that celebrated path more than once, only to be diverted by recurrence or metastases of the disease.
For three years, Claire fought hard with a quiet resolve, her sense of humor and joy of life fully intact. She kept her diagnosis private so she could just be a normal teenager as much as possible. Through debilitating treatments, she still managed to maintain her academics, sports, competitive aerobics and design studies. She enjoyed a bounty of friends who often found their way to our home.
The day before she passed away in October of her senior year, Claire learned she was accepted into two colleges to study design, her longtime dream. She was thrilled and still making plans for her future.
Part of Claire’s plan included becoming an advocate to raise awareness of melanoma in young people. As her family, we now champion that cause while celebrating her passion for life and the joy, color and beauty she embraced every day.
Through our CMF Collegiate Ambassador Program, 106 young people are sharing her story and offering awareness prevention through our peer-to-peer melanoma education program on 46 campuses ntionwide.
Through our partnership with Johns Hopkins Dermatology we offer professional education to resident dermatologists and pediatricians to help them better understand the nuances of melanoma in adolescents and young adults.
We screen hundreds of young people annually through the CMF Free Skin Screening Program in Maryland, finding atypical moles and melanoma at the earliest stages possible.
We are still a family of four. Claire will always be with us, always our strength and inspiration. We carry out her mission every day by sharing her story and celebrating the amazing young woman we were privileged to call our daughter and sister.