As a mother of three older children, I quickly sensed that something was terribly amiss with my 8-month-old daughter, Lily. Unlike her siblings, she hadn’t begun crawling and was starting to regress in her development. She struggled to hold her bottle with an open grip, instead clenching it tightly in her tiny fists. By the time she turned 9 months, she still couldn’t stand in her crib like her older siblings had at that age. It felt as though she was losing her strength, her body becoming limp and doll-like over just a few weeks.
One morning during tummy time, I placed Lily on the floor, and though she pushed herself up, she couldn’t lift her head. The moment I saw the pain etched on her face shift to frustration, I knew something was profoundly wrong. I never imagined that a brain tumor could be the culprit.
At 10-and-a-half months, Lily received a harrowing diagnosis: a brain tumor. Life transformed into a blur of medical appointments, including numerous MRIs, CT scans, and consultations with neurosurgeons, all occurring within a single month. We were bombarded with questions but struggled to determine which ones were crucial.
Two weeks later, emergency surgery was performed, revealing a Desmoplastic Infantile Ganglioglioma—a rare, aggressive, and malignant tumor. Thankfully, the operation was successful, and the tumor was entirely removed. Despite its low-grade classification, the tumor threatened nearly half of Lily’s brain space. Unfortunately, she has faced numerous health challenges since, requiring four emergency surgeries, including one just a week after the initial procedure.
Lily was finally discharged two weeks later, just a day after her first birthday at the Children’s Hospital in Los Angeles. The aftermath of her diagnosis has led to other neurological disorders, major orthopedic surgeries, and the likelihood of more surgeries in the future.
In the wake of such a devastating diagnosis, our family grappled with an overwhelming sense of loss and disbelief. Our lives had to be rewritten as we navigated this new reality. Despite the isolation we felt, we chose to hold on to hope.
Lessons Learned
Through this experience, we have learned invaluable lessons. Caring for a child who is now a brain tumor survivor has taught us the importance of cherishing every moment. Additionally, I hope to offer advice to others facing similar challenges.
- Connect with Supportive Organizations
We discovered the California Chapter of the Pediatric Brain Tumor Foundation (PBTF), a global nonprofit dedicated to families confronting a child’s brain tumor diagnosis. Engaging with PBTF was transformative for us. They provided invaluable resources and emotional support. Through their family camps, workshops, and holiday events, we formed lasting friendships with other families in similar situations. We’ve created a strong network of allies in this fight. - Utilize Resources to Alleviate Your Child’s Fears
A brain tumor diagnosis can be frightening for anyone, especially a child. The medical jargon and treatment processes can instill anxiety. PBTF developed the Imaginary Friend Society, which features a series of animated films designed to explain cancer treatment in a child-friendly manner. Topics include “What Is an MRI?” and “Returning to School,” helping children process their experiences and fears, while also addressing siblings’ concerns. - Embrace Your Emotions
Having a child with a brain tumor is an emotional rollercoaster, and it’s perfectly okay not to feel strong all the time. People may commend your bravery, but it’s essential to acknowledge your feelings. I’ve found strength in vulnerability and have learned to rely on my support network. Sharing emotions with family and friends is critical; we are not alone in this journey.
While I wish I could provide a simple solution for coping with a pediatric brain tumor diagnosis, the best course of action is to build a supportive network and seek assistance when needed. The people willing to help want to be there for you—let them in.
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Summary
This article discusses the emotional journey of a mother whose 8-month-old daughter, Lily, was diagnosed with a pediatric brain tumor. It highlights the initial signs of developmental regression, the diagnostic process, and subsequent surgeries. The author shares lessons learned from engaging with support organizations, addressing children’s fears, and coping with emotional challenges. Overall, it emphasizes the importance of building a support network during difficult times.