Parenting
By Emma Johnson
April 29, 2023
Trigger warning: childhood illness
As a mother of three older children, the moment I recognized something was amiss with my 8-month-old daughter, Lily, was heartbreaking. Unlike her siblings, she had not crawled, and I noticed troubling signs of developmental regression. Simple tasks, like holding her bottle, became a challenge as she began to grip it with clenched fists. By nine months, she was unable to stand in her crib, and her once vibrant body appeared limp, losing muscle tone rapidly.
One morning during tummy time, she managed to push herself up but failed to lift her head. The look of pain transformed into sheer frustration, and in that moment, I understood something was gravely wrong. However, it never crossed my mind that a brain tumor could be the cause of her struggles.
At just ten-and-a-half months, Lily was diagnosed with a brain tumor. Everything that followed felt surreal, like a movie playing in fast forward. Within a month, she underwent numerous MRIs, CT scans, and consultations with neurosurgeons. We had an overwhelming number of questions, but figuring out which ones to ask was a daunting task.
Two weeks later, Lily had emergency brain surgery and was diagnosed with a Desmoplastic Infantile Ganglioglioma, a rare and aggressive tumor type. Fortunately, the surgery was successful, and the tumor was completely removed.
Despite its low grade, the tumor was dangerously large, occupying nearly half of Lily’s cranial space. Unfortunately, the aftermath of her diagnosis has led to multiple health issues. She has undergone four additional emergency brain surgeries, including one just a week after her initial surgery.
Lily spent her first birthday at Children’s Hospital Los Angeles, where she was finally discharged two weeks later. The challenges didn’t end there; the brain tumor diagnosis resulted in other neurological disorders, and she has faced significant orthopedic surgeries over the past two years, with the possibility of more in her future.
In the wake of this devastating news, our family was engulfed in a profound sense of loss and shock. Our lives had to be rewritten under a completely different lens. While it often felt as if we were the only ones navigating this exhausting reality, we clung to hope.
Our journey has imparted invaluable lessons. Caring for a child who is a brain tumor survivor has taught us to appreciate every precious moment. Additionally, I now have the opportunity to share insights with others facing similar challenges.
1. Seek Supportive Organizations
We discovered the California Chapter of the Pediatric Brain Tumor Foundation (PBTF), a global nonprofit dedicated to supporting families affected by a child’s brain tumor diagnosis. Engaging with PBTF has been one of our best decisions. This organization provided us with comfort and resources, helping us realize we were not alone. We have greatly enjoyed their family camps, workshops, and holiday events.
The resources offered by PBTF have significantly enhanced Lily’s quality of life and ours. We have developed supportive friendships with other parents, and our children have forged unique bonds with fellow patients. In this fight, we needed allies, and we became a close-knit family filled with hope.
2. Provide Resources to Alleviate Your Child’s Fear
A brain tumor diagnosis can be terrifying, especially for a child. The unfamiliar medical terminology and procedures can heighten anxiety. It is crucial to have resources on hand to help alleviate your child’s fears. PBTF has created an initiative called the Imaginary Friend Society, which includes a series of 20 animated films designed to explain cancer treatment in a child-friendly manner. Topics range from “What Is an MRI?” to “Blood Transfusions,” and even a guide for siblings to help them express their feelings.
3. Embrace Your Emotions
It’s okay to feel overwhelmed when your child is diagnosed with a brain tumor. The emotional toll is immense. You may hear people commend your strength, but it’s essential to acknowledge that it’s perfectly normal to feel vulnerable. I learned to embrace my emotions, facing each challenge alongside Lily. The routine of hospital visits, appointments, and procedures can be exhausting, but we find the strength to persevere for our children.
It’s crucial to discuss your feelings with friends or family. At times, I felt my courage wavering, but as mothers, we push through. Remember, it’s okay to not be okay. Lean on resources, organizations, and support from others who understand your situation. You are not alone.
While there may not be a foolproof way to navigate the challenges of a pediatric brain tumor diagnosis, building a solid support network is essential. Don’t hesitate to ask for help; those who care about you genuinely want to assist in any way they can.
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In summary, navigating the diagnosis of a pediatric brain tumor is a challenging and emotional journey. However, with the right support and resources, families can find hope and strength amidst the struggles. Cherish each moment, seek help when needed, and remember, you are never alone.