When my daughter Nancy started showing changes at around 15 months old, I tried to stay calm. Her frequent ear infections seemed like a possible reason for her behavior. Nancy wasn’t the cheerful, easygoing child we knew. Yet, I hoped the issue would resolve.
After she got ear tubes, I felt hopeful for improvement. However, something still felt off. As parents, you often know your child best. Even if everything appears fine, there might be a nagging feeling when things don’t add up. Nancy didn’t appear visibly ill. No single alarming symptom stood out, only subtle changes that were hard to describe but too evident to ignore.
On reflection, neuroblastoma is challenging to detect. Symptoms are vague and often mistaken for typical childhood illnesses. During this period, we sought to understand why our daughter seemed different. Seven months later, we received unexpected news. The diagnosis was something unimaginable.
The day Nancy was diagnosed stays vivid in my memory. We entered the appointment hoping for clarity. We anticipated something minor and manageable, not a stage 4 cancer diagnosis. Hearing she had neuroblastoma felt devastating. From pondering over toddler fussiness, we suddenly faced terms like “metastatic” and “aggressive disease.” I stared at the scans in disbelief. A huge tumor was on her adrenal gland, affecting her kidney and spine, with cancer spreading to her bones and eyes. It was shocking knowing how serious it was internally without our knowledge.
After the diagnosis, questions filled my mind. I went over each appointment and symptom again, wondering if we missed signals or didn’t push enough. Neuroblastoma is difficult to diagnose early given its symptoms mimic common issues like ear infections and fatigue. Although this knowledge offers some relief, it doesn’t erase how rapidly everything changed.
“Those small moments from the past remain with me.”
At Nancy’s 12-month check-up, she was slightly anemic. We were advised to add more iron to her diet, a common suggestion for breastfed babies. Months before her diagnosis, she limped for weeks. Tests returned normal, and we were told to monitor her. In hindsight, I wonder whether extra testing would have made a difference. I wish I insisted on more answers and tests back then. Yet, at that time, none of the symptoms pointed visibly towards advanced cancer. A key lesson I’ve learned is to trust your instincts as a parent. You might not have all answers, but acknowledging when something feels wrong is vital.
Since Nancy’s diagnosis, our lives have transformed completely. The uncertainty has been the hardest part. As parents, you yearn to fix things, to protect your child from harm. Yet, in this case, there’s little we can prevent. We sit beside her, comfort her, advocate for her, and make difficult decisions based on the information provided.
Nancy has spent over 70 nights in the hospital within six months. Living about an hour away from her treatment center in Norfolk, Virginia, we’re constantly traveling for appointments and treatments, even when not hospitalized. At home, we’re still immersed—administering chemotherapy, monitoring for symptoms, and managing medications.
In attempting to maintain normalcy, we’re focused on balancing our children’s needs. Nancy has three loving older sisters, and balancing attention has been challenging. Often, one of us remains in the hospital while the other attends family events, trying to maintain stability. At times, you wish to be in two places simultaneously.
As partners, staying connected and supportive has been key. Communicating and reminding ourselves that we are safeguarding both our family and our future. Cancer impacts not only the child but also relationships, work, finances, and mental health. Despite tough times, Nancy’s spirit amazes us. Her strength and resilience encourage us to persevere. She brings joy through small actions, whether it’s playing outdoors or crafting. We treasure these moments deeply.
The battle with cancer has redefined our lives and brought clarity. Time is precious now, and we don’t take it for granted. We face uncertainty, yet remain hopeful. We are grateful for our doctors, family, friends, and even strangers supporting us. Above all, we cherish each day with Nancy and remain determined, fighting alongside her.
Marianna Nice, based in Williamsburg, Virginia, shares Nancy’s battle with neuroblastoma on TikTok (@thehomefrontmama). She and her husband, Daniel, have a GoFundMe to raise $35,000 for ongoing medical expenses. The views in this article are the author’s own.