As a mother of three older children, I sensed that something was profoundly wrong with my 8-month-old daughter, Lily. Unlike her siblings, she had not begun crawling and was displaying concerning developmental regressions. She struggled to hold her bottle correctly, resorting to gripping it in a fist instead of with open hands. By the time she reached 9 months, she had not achieved the ability to stand in her crib, a milestone we had come to expect. Her little body resembled a limp doll, losing muscle tone at an alarming rate over just a few weeks.
One morning during tummy time, I placed her on the floor, and while she attempted to push up, she couldn’t lift her head. The pain on her face morphed into frustration, and that was when I knew something was seriously amiss. I never imagined that a brain tumor could be the cause of her distress.
At just 10-and-a-half months old, Lily was diagnosed with a brain tumor. The events that followed felt surreal, almost like a time-lapse film. Within a month, Lily underwent numerous MRIs, CT scans, and consultations with neurosurgeons. We had countless questions for the medical team, but determining which ones to ask proved challenging.
Two weeks later, Lily underwent emergency brain surgery, where she was diagnosed with a Desmoplastic Infantile Ganglioglioma, a rare and aggressive tumor. Fortunately, the surgery was a success, and the tumor was completely removed. However, despite being classified as low-grade, it occupied a significant portion of Lily’s brain, leading to various health complications. Since the initial surgery, she has faced multiple emergency procedures, including one shortly after her first birthday at the Children’s Hospital in Los Angeles.
In the aftermath of the brain tumor diagnosis, our family experienced profound grief and shock. Our lives were suddenly redefined, requiring us to adapt to a new reality. Although it felt isolating, we maintained hope throughout this journey.
Our family has gained invaluable insights from this experience. Supporting a child who is a survivor of a brain tumor has taught us to treasure every moment. Moreover, I feel compelled to share some advice with others navigating similar circumstances.
1. Seek Support from Organizations
We discovered the California Chapter, formerly known as WeCan, of the Pediatric Brain Tumor Foundation (PBTF), a global nonprofit dedicated to families facing pediatric brain tumor diagnoses. Engaging with PBTF was one of the best decisions we made. They provided us with resources and a sense of community, helping us realize we were not alone. Their family camps, workshops, and holiday events have enriched our lives, allowing us to connect with other families in similar situations.
2. Find Resources to Alleviate Your Child’s Anxiety
Receiving a brain tumor diagnosis can be terrifying, particularly for children. The unfamiliar medical terminology and treatment processes can lead to significant anxiety. It’s essential to have resources available to help ease their fears. PBTF offers a unique program called the Imaginary Friend Society, which presents cancer treatment concepts in an accessible and less frightening manner through animated films like “What Is an MRI?” and “Feeling Sad.”
3. Acknowledge Your Emotions
It’s completely acceptable to not feel okay when your child is diagnosed with a brain tumor. The emotional toll can be intense. While people may commend your strength, it’s vital to embrace vulnerability and connect with friends or family to discuss your feelings. During challenging times, I sometimes felt my strength waning, but we pushed through because we were fighting for our child.
There’s no secret formula for coping with a pediatric brain tumor diagnosis. Building a network of support and seeking help when needed is crucial. Those who want to support you are there to listen and assist—let them.
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Summary
After my daughter Lily was diagnosed with a pediatric brain tumor, our lives were turned upside down. We learned to seek support, find resources for managing anxiety, and acknowledge our emotions. This journey has not only strengthened our family bonds but also deepened our appreciation for every moment together.