Trigger warning: childhood illness
As a mother of three older children, I knew something was terribly wrong with my 8-month old, Emily, who had never crawled and started to regress developmentally. She could no longer hold her bottle with her open hands and instead, she began holding it with her hands in a fist. She couldn’t stand up in her crib by 9 months like my other children did at that stage. She began to miss milestones and her little body became the likeness of a rag doll and losing muscle tone in a matter of a few weeks.
One morning, when I put her on the carpet for tummy time, she pushed up, but she could not pull her head up. First I saw the look of pain on her face, and then it shifted to pure frustration, and that’s when I knew that something was not right. I knew there had to be something very wrong with her, but never did it ever occur to me that it would be a brain tumor that was causing harm.
At 10-and-a-half months, she was diagnosed with a brain tumor. Everything seemed like a time-lapse movie after that. She had a myriad of MRIs, CT scans, lab work and several visits with neurosurgeons all within a month. To say that we had a million questions for the medical team is very accurate, but which ones to ask was a most difficult challenge for us.
Emily eventually underwent emergency brain surgery two weeks later. She was diagnosed with a Desmoplastic Infantile Ganglioglioma, a very rare, fast-growing and malignant tumor. The surgery was a complete success and the tumor was fully resected.
Even though the tumor was low-grade, it was the deadly type, taking up almost half of the precious real estate space in Emily’s cranium. However, Emily has had many health issues due to this diagnosis. She has undergone four emergency brain surgeries since, one being performed just within a week of the main resection surgery.
She was eventually discharged two weeks later, a day after turning one year old at Children’s Hospital Los Angeles. Unfortunately, as a result the brain tumor diagnosis, she has to endure other neurological disorders and has had major orthopedic surgeries in the last two years and may need more in the future.
Almost immediately after dealing with such a devastating diagnosis, our family felt an overwhelming sense of loss and were left in a state of shock. Suddenly, our lives had to be re-written and re-started in a totally different light. Even though it felt like we were the only ones living this exasperating situation, we have never lost hope.
Our family has learned tremendously from this experience. Coping with a child who’s now a brain tumor survivor has taught us to cherish every moment of our lives; and another positive aspect of all this, is that I get to share some advice with others going through a similar experience.
1. Find An Organization To Lean On
We found the CA Chapter, (formally WeCan), for Pediatric Brain Tumor Foundation (PBTF), a worldwide nonprofit dedicated to families facing a child’s brain-tumor diagnosis. Getting involved with PBTF was one of the best decisions we’ve ever made. Learning about this organization was a pivotal moment in our journey, where we found comfort and support for people like us. They offered many resources and we found we weren’t alone. We’ve truly enjoyed their family camps, workshops and holiday celebrations.
PBTF’s resources have been instrumental in bettering Emily’s quality of life and ours as well. One of the most special things that happened through PBTF is that we’ve built mutually supportive friendships with other parents, and our kids have created a unique and special bond with other patients too. We needed to create friends and allies in this fight. Undoubtedly, we will be life-long friends with these families. We are all one huge family full of hope.
2. Find Resources To Ease Your Child’s Anxiety And Fear
A brain tumor diagnosis is scary for anyone, but for a child it can be even scarier and more confusing. Constantly hearing unfamiliar medical-speak and undergoing treatments can lead to a lot of anxiety and fear. It’s crucial to have resources available to ease your child’s anxieties. PBTF created such a resource, the Imaginary Friend Society, to help teach kids about cancer treatment in a less scary way that’s easy to understand. The imaginary friends are in a series of 20 animated films, such as “What Is an MRI?”, “Feeling Sad,” “Finding Out You Have Cancer,” “Blood Transfusions” and “Returning to School,” as well as an interactive-style video of “Help for Brothers and Sisters” that helps siblings talk about their feelings.
3. It’s Okay To Not Be Okay
Your child has a brain tumor—you are allowed to not be okay. It is an emotional rollercoaster. People may say you’re so strong or you’re so brave. I tried to be strong, but it’s not easy. However, I allowed myself to be vulnerable and together with my ill child always found the courage to face it all. It seems impossible what we do—going to the hospital day in and day out, sitting through appointments, blood transfusions, and MRIs and many shunt revisions. There’s not one answer to how we have the strength for it. We do it for our child. It’s important to be able to discuss your emotions with a friend or a family member. Sometimes, I felt I was loosing my courage and strength, but we persevere because we’re moms. It’s okay to not be okay. Utilize resources, organizations, friends and family for support, especially others in your situation. You are not alone.
I wish I could say there is a secret to living through a pediatric brain tumor diagnosis. The best you can do is build your support network and ask for help when you need it. The people who are there to support you want to help, listen and lend a hand—let them.