A Mother’s Journey Through Her Daughter’s Neuroblastoma Diagnosis

When Nancy, my daughter, began acting differently around 15 months of age, I initially dismissed my concerns as nothing serious. Frequent ear infections seemed like a plausible explanation for her behavior. Nancy appeared unsettled and less like her usual happy self, but I hoped these changes would resolve once she had ear tubes fitted.

Following the procedure, my optimism returned, believing we would see improvement soon. Yet, the nagging feeling persisted. As a parent, you develop an intuitive sense of when something is amiss with your child, despite everything seeming ‘fine.’ Nancy didn’t display any overtly alarming symptoms, but there were subtle changes that couldn’t be ignored.

Understanding neuroblastoma’s elusive nature and its vague symptoms has been eye-opening.

Seven months later, our world shifted when we received her diagnosis. We anticipated minor issues during the appointment, seeking clarification on her condition. Instead, we heard the devastating announcement: stage 4 neuroblastoma. Shock overtook us as we learned cancer had spread extensively, affecting Nancy’s adrenal gland, bones, skull, and even the eye sockets.

Reflecting on Nancy’s earlier symptoms often leaves me questioning if different decisions could have led to an earlier detection. At her 12-month check-up, her slightly low hemoglobin levels led to advice on incorporating more iron into her diet. A persistent limp emerged months later, prompting tests including an X-ray and leukemia screenings, all returning normal results. At times, I wonder if further testing would have revealed more.

The lesson I have learned is to trust parental instincts. Whether exact answers are elusive or not, it is crucial to acknowledge when things feel off.

Since Nancy’s diagnosis, our lives have transformed. Uncertainty is omnipresent, challenging our instinct as parents to protect and comfort her. With more than 70 nights spent in hospitals, we commute frequently to Norfolk, Virginia, navigating between appointments and treatments. Daily life involves managing side effects, medications, and monitoring for potential complications.

Balancing Nancy’s needs with those of her three older sisters is a constant endeavor. The desire to be present for all our children and family activities is sometimes impossible. Intentionality in our marriage, through communication and support, is essential as we safeguard the future of our family amid unforeseen challenges.

Cancer affects more than the patient—it extends to relationships, professional life, finances, and mental health. Nevertheless, Nancy’s resilience inspires us to continue. Her courage through countless medical interventions offers hope. We cherish joyous moments, maintaining a sense of normalcy whenever possible.

While cancer has changed our lives, it grants us perspective and a deeper appreciation for time. Hope underpins our journey. We remain grateful for medical professionals, loved ones, and supporters, with a focus on each day spent with Nancy.

Our fight alongside Nancy persists—driven by love and hope.