On Dec. 4, 2003, my brave and beautiful girl was diagnosed with acute lymphoblastic leukemia. She was 5 years old.
Telling my little girl she had cancer was one of the most difficult things I’ve done in my life. Pediatric cancer destroys childhood innocence. I can still close my eyes and see the images: the clinic filled with precious, bald and brave children, the doctors and nurses in masks because my daughter had no immune system to even battle the common cold, the IV bags labeled “biohazard” that I prayed would save my daughter’s life.
She battled bravely for 3 years, through endless rounds of daily chemotherapy, multiple bone marrow aspirates, and lumbar punctures. No parent should witness their child suffer so. We had a pediatrician who listened to my concerns of lethargy, night sweats, bruises, hip pain, and temperament changes.
We weathered the storms because we were surrounded by support, from an incredible treatment team who answered my never-ending questions regarding her treatment protocol, to the social worker who helped us navigate this brave new world, to the community who surrounded us, fed us, cheered us on and never let us feel alone.
After treatment, we knew we would deal with new challenges. Late-term side effects are almost a guarantee after that much chemotherapy. However, we had no idea what was coming our way.
When our daughter was in eighth grade, her PE teacher performed a Body Mass Index in class. Up until that day, our brave girl was pretty healthy, going to school, playing water polo, savoring life, food, friends and family.
The BMI was the lit match thrown into the powder keg of our girl’s deep-seated fears for her health. Starting that day, she began to exercise compulsively and restrict her food intake. I noticed immediately. Much like when the leukemia started to grow inside my girl, her temperament began to change. This was the beginning of an awful journey that has lasted more than eight years. Leukemia was easier to navigate than anorexia nervosa.
One of the things we learned very quickly was the difference in the way you are treated when you or a loved one battles cancer versus a mental health issue. Anorexia nervosa is the most deadly of all mental health issues due to the underlying biological components.
Simply put: they starve to death.
Trying to explain to friends and family the challenges we were navigating became an exercise in futility and frustration. The tools that had been so helpful when she battled leukemia were no longer an option. The insurance company that told us our child’s life is worth the fight when she had cancer, didn’t feel the same about a mental health issue.
I am sharing our story in the hope that someone else reading this will not feel alone.
Nearly 33% of Utahns battle a mental health issue, however, of those diagnosed only 50% receive treatment. And those are the people we know about, who are actively seeking help. There are far too many who suffer in silence. There are far too many who are no longer with us because they just couldn’t face another day.
And no, it’s not possible to just decide to be happy when battling a mental health issue. The issue is a physiological one. It requires the same kind of care and compassion that battling cancer does. I know this because we live it.
I am a profoundly private person. This issue is deeply personal for my family. It resonates with me when others bravely share their own challenges. That’s why I felt inspired when Jon Huntsman bravely shared the painful story of losing his own sister to mental illness. I felt real hope for future resources and support for patients and families as he shared his plan, knowing that real healing could occur if these goals become a reality
It is time for Utah to show its support for those who suffer in silence. Legislation, funding and advocacy are desperately needed. We must recognize the toll this devastating disease is wreaking in our state and demand our struggling citizens get the support, medically and socially, they deserve.
We need leaders at every level of government, in our schools and in our communities who are willing to join the fight against every type of mental illness. Changing our attitudes and approach toward mental illness will help my daughter and so many others get the care they need — it is a matter of leadership and commitment — for all of us.
Robyn Froerer is a mental health advocate, chef and culinary instructor.