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In July of 2024, our daughter Zelda was diagnosed with a tectal plate glioma after what started as worsening migraines and coordination issues eventually turned into stroke-like symptoms that sent us to the emergency room. An MRI revealed that the tumor was blocking fluid drainage in her brain and causing severe hydrocephalus. Within hours, she was life-flighted to Children’s Hospital Colorado.
Hearing the words “your child has a brain tumor” changes everything instantly, even when doctors tell you it is likely benign and slow growing. Zelda underwent surgery to create a new drainage pathway in her brain, and thankfully, the surgery was successful. Recovery, however, was not simple. She experienced fatigue, memory gaps, and needed time to rebuild her mental stamina.
One of the hardest parts of this experience has been learning that healing is not always visible. Most days, Zelda is a funny, cat-loving preteen with a dramatic eye roll and endless opinions. Other days, she is exhausted and needs rest that most people cannot see or fully understand.
As parents, we have had to learn to live in the space between gratitude and fear. We are deeply thankful that Zelda is here, thriving, and able to continue being a kid, while also knowing our lives now include regular MRIs, monitoring, and uncertainty. This experience has changed our family forever, but it has also shown us how resilient Zelda truly is.
The biggest change was losing the illusion that life is predictable. Before Zelda’s diagnosis, migraines and clumsiness felt explainable. Afterward, every symptom suddenly carried weight.
As a mom, I struggled heavily with guilt. I replayed moments in my head, wondering if I should have pushed harder sooner or recognized the signs earlier. Looking back, I can now see symptoms of hydrocephalus that we did not fully understand at the time. Thankfully, our pediatrician recognized that something more might be happening and helped us get answers.
Since the diagnosis, our lives revolve around balancing normal childhood experiences with medical reality. We think about MRIs, travel to Denver, recovery days, school accommodations, and cognitive fatigue in ways we never imagined before. At the same time, we fight hard to make sure Zelda still gets to simply be a kid.
Finding other parents and families online who understood this experience helped me more than I can fully explain. Before that, I felt isolated in my fears and guilt. I constantly worried that I was missing something or failing to protect my daughter from future obstacles.
Hearing from families farther down this road helped me understand that many of these feelings are normal. It reminded me that I cannot control every outcome, no matter how badly I want to. The community gave us practical advice, reassurance, and hope.
It also helped us see that there is still so much life ahead for Zelda. Seeing other children living full, joyful lives despite brain tumors helped shift our focus from fear alone to possibility.
Gray May
Brain Tumor Awareness Month matters because brain tumors can be invisible in so many ways. Before Zelda’s diagnosis, I did not understand how symptoms could slowly build over time or how much a “benign” brain tumor could still impact a child’s life.
I go gray in May because families facing brain tumors need support, awareness, research, and understanding. People often hear non-cancerous and assume everything is fine, but the reality is much more complicated. Brain tumors can affect memory, energy, emotions, learning, coordination, and everyday life long after surgery.
I also go gray for the families sitting in emergency rooms, waiting for MRI results, hearing terrifying words they never expected to hear about their child.
I wish more people understood that “benign” does not mean easy.
A brain tumor can completely change a child’s life and a family’s life, even when it is not considered cancerous. Recovery is not linear, and many of the struggles are invisible. A child may look healthy while still dealing with fatigue, cognitive exhaustion, memory challenges, or anxiety.
I also wish more parents knew that symptoms can be subtle and gradual. Zelda’s migraines and coordination issues developed slowly over time. Parents should trust themselves when something feels off, even if the symptoms do not perfectly fit together yet.
One thing this experience taught us is that resilience does not always look dramatic. Sometimes it looks like a little girl joking that the hospital should have a cat café because she misses her pets. Sometimes it looks like relearning stamina one day at a time.
We are incredibly grateful for the support our family received from friends, coworkers, medical staff, and our community. From people donating toward medical expenses to simply checking in on Zelda as a person and not just a patient, that support carried us through some very difficult moments.
Most importantly, Zelda is still Zelda. She is funny, stubborn, smart, cat-obsessed, and deeply herself. A brain tumor became part of her story, but it is not the whole story.
