Five years ago, I had the pleasure of meeting with Susan Giusto. She is a driven, passionate mom who wants to make this world a better place by sharing her story of survival and beating cancer with her entire family. Because as a Mom, do you really have any other outcome? Susan is keenly focused on early detection for pediatric cancer and won’t stand down until we have different outcomes for our “future leaders”. Susan is the mother of two daughters, one of which survived Stage 4 Neuroblastoma. She founded The Friends of Cathryn Foundation in 2010 to provide family support, advocacy, and research fundraising for childhood cancer causes. Prior to her work in this area, she had a long career in sales and marketing and currently works in sales/communication training. Susan’s husband, Steve, is the Chairman of the Board of Pediatric Cancer Research Foundation. They live in Laguna Beach, Ca.
Have you ever had that strong feeling that something was wrong, that you just knew it deep in your gut and in your bones? Many of us have experienced that sort of intuition at some point in our lives and can agree that it’s very powerful. For women who are blessed to become mothers, that intuition comes with the job; a mother’s intuition is a force so real that it literally can’t be ignored. A mother knows when something is not right, off, or in danger of harming her child. Some scientists believe we intuit because our bodies literally carry the DNA of our child after pregnancy. Another school of thought extols that this sense is derived from gestational hormones. Regardless of its origin, it’s hard to deny the strength of a mother’s intuition that, in some cases, can save her child’s life.
I’m one of those mothers. Closing in on kindergarten, my happy, easy and outgoing little girl became occasionally fatigued, beset by headaches, back pain, and unusual temperament/behavior changes. An initial trip to the Pediatrician became two then three visits over six months with symptoms persisting and then growing worse. Our pediatrician excused the pains, rationalized the moodiness, and denied testing or performing x-rays for fear of radiation exposure or unnecessary expense. Admittedly now, I have to say I was relieved that the physician concluded that nothing was wrong but, in my mother’s heart, I knew something continued to be off.
My intuition bellowed as I took my daughter to two doctors while on vacation that summer as symptoms of fatigue continued. Perhaps a flu bug or dehydration was their quick assessment. As I hugged my daughter on her 5th birthday early that Fall, she jumped at the pain from that tight squeeze. That was it, and I insisted to our pediatrician that an x-ray be performed immediately. Within a few days, the x-ray revealed a smartphone-sized tumor in my daughter’s chest cavity, mere centimeters from her spine. With metastasized cancer throughout her body. My daughter had Stage 4 Neuroblastoma with a 35% chance of survival.
The specialist who delivered the grim message, “your daughter has cancer”, a respected neuro-surgeon and father of five children, could not believe my daughter was this ill because she presented as a perfectly healthy child. I shared our journey and that my nagging intuition drove us from one appointment to the next all the while pressing for answers and acknowledgment that she was in danger. He asked me to share this story with everyone along my daughter’s long journey through treatment. He believed, as a father and physician, that the mother knows her child better than any doctor could and that her voice is too often neglected in the diagnosis process.
Since that time, I have met hundreds of mothers just like me. The fierceness of a mother fighting for her child’s life brings together mothers from every corner of the world and from that bond comes support, insight and information. What I’ve learned from these mothers could fill a much longer article but, suffice to say, a mother’s intuition played a large part in getting many children diagnosed when a doctor failed to acknowledge, trust and heed her concerns.
It’s unfortunate that a child’s cancer diagnosis is often delayed due to a well-meaning physician’s lack of resources, experience, training or biases, and time. The delay brings continued pain, suffering and disease spread and, ultimately, eroded trust of physicians. With very simple and practical steps, a Pediatrician can more readily detect symptoms that could be cancer, getting that child into treatment months earlier. Working together, in collaboration and respect, a parent and physician can do much better for these children. The first step is to listen to the parent, trust their knowledge of their child and pay special attention to the intuition of a mother, it’s seldom wrong.