Cancer caregivers: As the patient’s advocate, you can never give up
Posted: May 15, 2020 | Word Count: 668
An unexpected diagnosis
When Donya Quinlan found out her 17-year-old daughter Sawyer had melanoma, a serious form of skin cancer, she was devastated. There was no history of melanoma in the family, and while sun protection is important, this wasn’t a case of Sawyer not protecting her skin properly. Sawyer’s form of melanoma was unique in that it was discovered when it started in one part of her body and spread to others. When melanoma spreads from one part of the body to another this way, it’s called metastatic melanoma.
Understanding specific types of melanoma
Sawyer underwent surgery to remove the cancerous cells, but some melanoma remained in her body. As a next step, Sawyer received genetic testing to determine her mutation status, which revealed whether her melanoma had a specific genetic mutation. This information helped to inform Quinlan and Sawyer about all treatment options to help combat Sawyer’s melanoma.
Empowered with the knowledge of Sawyer’s mutation status, Quinlan and Sawyer were able to decide what treatment options to pursue. One type of genetic mutation associated with melanoma that a genetic test would identify is the BRAF V600 mutation, or BRAF, for short. Approximately one in two people with advanced melanoma has the BRAF mutation (also called BRAF positive), which is associated with a more aggressive form of the disease, so it is important for patients to know what type they have as early as possible. Caregivers of a loved one who has melanoma can learn more about BRAF mutation testing at KnowNowBRAF.com/patient.
The greatest lessons of caregiving
For the eight years Sawyer battled melanoma, Quinlan was there alongside her, “going to every doctor appointment, or flying with her every three weeks for treatment.” As their relationship as mother and daughter strengthened, Quinlan became inspired as a caregiver and learned several lessons along the way:
- Go with your gut – “The greatest personal lesson I learned while caring for Sawyer was that I had to follow my gut instincts.”
- Be the voice of your loved one and be assertive – “You are their advocate and their voice, and you have to be able to find the happy medium. Most all of the time Sawyer had me ask questions for her, sometimes we didn't always agree but she knew I was out for her best interest.”
- Remember yourself – “Do what you can and admit what you cannot do, accept helping hands and try to keep yourself healthy.”
- Stay humble and know it’s ok to ask for help – “I needed to stay humble and knew when I needed to ask for help. We learned what a wonderful small-town community we live in and how very good people can be. There are a lot of businesses, organizations to reach out to for financial or travel help,” said Quinlan. There are many advocacy groups that provide resources to those with melanoma and their loved ones including AIM at Melanoma, Melanoma Research Foundation, Melanoma Research Alliance, Melanoma International Foundation, and the Skin Cancer Foundation.
“I will never regret being her biggest advocate, caregiver, and best friend,” said Quinlan.
Inspiring others with hope
With a great sense of humor and positive attitude, Sawyer “faced her battle with dignity and humility,” Quinlan said. “She never let herself get down and lived every day to its fullest.” Sawyer’s story is an inspirational one, and her legacy to have faith and never give up lives on with her family, friends and community.
Throughout their journey, Quinlan and Sawyer helped to increase awareness about the different forms of melanoma. If you or a loved one has melanoma, advocate for yourself and ask about mutation testing.
“I was with her until the very end,” Quinlan said of Sawyer. Being Sawyer’s caregiver was one of my biggest accomplishments and an honor. Sawyer and I kept faith alive in each other, and we were lucky to have 24 years together. She faced her battle with dignity and humility. Her legacy is, “have faith and never give up!”