As a mother of three older children, I sensed something was seriously wrong with my 8-month-old daughter, Sarah. Unlike her siblings at that age, she hadn’t crawled yet and was beginning to regress in her development. She struggled to hold her bottle, gripping it in a fist rather than with open hands. By 9 months, she was unable to stand in her crib like her older siblings had done. Within a few weeks, I noticed her muscle tone deteriorating, leaving her body resembling a rag doll.
One morning during tummy time, as I placed her on the carpet, Sarah managed to push herself up but couldn’t lift her head. The pain on her face quickly morphed into frustration, which was a clear signal that something was amiss. I suspected a serious issue, but I never imagined it would be a brain tumor.
At just 10 and a half months old, Sarah received the diagnosis: a brain tumor. From that moment on, it felt like life was moving in fast forward. In the span of a month, she underwent numerous MRIs, CT scans, blood tests, and consultations with neurosurgeons. We had countless questions for the medical team, but figuring out which ones to ask was daunting.
Two weeks later, Sarah had emergency brain surgery. She was diagnosed with a Desmoplastic Infantile Ganglioglioma, a rare and aggressive tumor. Thankfully, the surgery was successful, and the tumor was entirely removed. However, despite being classified as low-grade, it was a particularly dangerous type, occupying nearly half of Sarah’s cranial space.
Since then, Sarah has faced numerous health challenges due to her diagnosis. She has undergone four emergency surgeries, including one within a week of the initial tumor removal. After her extensive treatment, Sarah was discharged from Children’s Hospital Los Angeles two weeks later, just a day after her first birthday. Sadly, the aftermath of her brain tumor diagnosis has resulted in other neurological issues and major orthopedic surgeries over the past couple of years, with the possibility of more to come.
The shock of such a devastating diagnosis left our family feeling a profound sense of loss. Our lives had to be rewritten, navigating this new reality was overwhelming. Although it felt isolating, we chose to remain hopeful.
Through this harrowing experience, our family has learned invaluable lessons. Supporting a child who is a brain tumor survivor has taught us to appreciate every moment. I also feel compelled to share some advice for others facing similar circumstances:
1. Seek Out Supportive Organizations
Getting involved with the Pediatric Brain Tumor Foundation (PBTF) was one of the best choices we made. This nonprofit organization offers vital resources for families grappling with a child’s brain tumor diagnosis. Learning about PBTF was a turning point for us, as we found comfort and support from others in similar situations. Their family camps, workshops, and holiday events have been incredibly enriching. The friendships formed with other parents have become lifelong connections filled with hope.
2. Utilize Resources to Alleviate Your Child’s Fear
A brain tumor diagnosis can be terrifying, especially for a child. Constant exposure to medical jargon and treatment procedures can create anxiety. PBTF has developed helpful resources like the Imaginary Friend Society, which uses animated films to explain complex medical concepts in a kid-friendly manner. Topics include “What is an MRI?” and “Feeling Sad,” making it easier for children to understand and cope.
3. Acknowledge Your Emotions
It’s natural to feel overwhelmed when your child is diagnosed with a brain tumor. You’re permitted to not be okay. While others may commend your strength, it’s important to allow yourself to feel vulnerable. Each day spent in the hospital for appointments and treatments can be exhausting. Leaning on friends, family, and support groups can foster resilience. Remember, you’re not alone in this fight.
While there’s no secret formula for navigating a pediatric brain tumor diagnosis, building a robust support network is essential. Don’t hesitate to ask for help—those who care about you truly want to offer assistance, listen, and support you during this challenging time. For more information on related topics, this blog post on home insemination might provide additional insights. Also, if you’re looking for more advice on fertility, check out Make A Mom, an authority in the field. For pregnancy guidance, Healthline is an excellent resource.
Summary
Navigating the journey of my daughter’s brain tumor diagnosis has taught our family invaluable lessons about resilience, support, and cherishing every moment. By reaching out to organizations like the PBTF, utilizing resources to ease our child’s fears, and acknowledging our own emotional struggles, we have forged a path forward filled with hope and connection.