Bindi’s story, as told by her mom, Melissa.
It started when Bindi was 3—over the course of a few weeks, a couple of things weren’t adding up. Bindi was left-handed. One day, however, I noticed she was coloring with her right hand. Trying to be the helpful mommy, I put the crayon back into her left hand, only for Bindi herself to put it back into her right hand. Hmmm. Later, while we were on vacation, she kept saying she was tired of walking. Not thinking much of that at first, I thought it was just a normal kid thing. But, it wasn’t only that. When we went swimming, she only used her right arm. She also began dragging her left foot. Something was wrong with my little girl, and I needed to get her help.
What’s wrong with Bindi?
When we came home from vacation, I took her to the emergency room close-by at York Hospital where they did a CT scan. About 10 minutes later, they took us to a small room where we talked with two doctors. I knew something was bad— really bad. They soon told us why Bindi was acting different and struggling with symptoms that we had yet to clearly understand: Bindi had a brain tumor the size of a kiwi. We needed to get her to the best pediatric neurosurgeons quickly. They took her by helicopter from York Hospital to Penn State Children’s Hospital. In that moment, I went from having this perfect life to my whole world crashing down. However, Bindi, being the most positive little girl, reassured me. She said, “Mommy, it’s OK. They’re going to take good care of me.”
At Children’s Hospital, I met pediatric neurosurgeon Dr. Mark Dias. He explained the tumor was pretty large and pushing on some of her motor nerves—causing the symptoms she had been experiencing on her left side. The solution: They needed to surgically remove the tumor.
Knowing the risky potential that the tumor could shift, Dr. Dias wasn’t able to remove all of it. There was still a marble size piece left after the surgery. Fortunately, Bindi had a great recovery and was doing well—she was already coloring the night of her surgery!
Thankfully, we soon learned that the tumor was not cancer! Even so, the pediatric neurosurgery team recommended a 12-month chemotherapy regimen, with monthly treatments, to shrink the tumor or keep it from growing since they could not remove all of it during surgery. She went through entire 12 months of treatment. After the 12 months of chemotherapy, they checked her every three months. During that time, it was shrinking little by little for eight months after the chemo. Unfortunately, after eight months, the MRI scan showed that the tumor started to grow again. The doctors recommended a second surgery. By this time, Bindi was 5 years old. I explained to her what was happening, and again, she said, “It’s OK, mommy. They’re going to take good care of me.”
After surgery, Dr. Dias told me there was a chance that she may not be able to walk. She’s so energetic and active and she loves running and playing—I couldn’t bear the thought of her never running or walking again! When I first saw her, I was rubbing her leg and tickling her—trying to do anything I could to help her move her legs. A few hours after surgery, as I continued to rub her leg, I saw a small twitch in her leg, and we both knew—she was going to be ok!
Even after the second surgery, a small part of the tumor still remained. Dr. Dias said with the risks from the size and difficult location of the tumor, Bindi was a perfect candidate for gamma knife. Gamma knife is a procedure that is an alternative to invasive brain surgery. This procedure allows experts to target areas considered too large or risky for invasive brain surgery.
Soon, we had her scheduled and ready! She was in and out of that procedure quickly. When she woke up she wanted to go out to dinner! So, we went out to dinner and you’d never know she had just had surgery, let alone brain surgery!
As we moved into 2017, we were ready to move forward! Bindi recently had her scheduled MRI, and everything looks normal! There’s still a chance that the tumor could grow back, but the doctors don’t expect it to.
It’s so hard to put your child’s life in someone else’s hands. Penn State Children’s Hospital was amazing. You’re not in a very good state-of-mind when you’re there, but the entire team is so helpful and accommodating. The team and the community, in general, do so much to support the children and families who are there. There’s a volunteer—Woody Wolfe—who visits the hospital to play guitar and sing with the children. To this day, Bindi still remembers him and misses him. To hear her laughter and see her smile when he walked in the room to sing with her brought me to tears. He was there for us at just the right moment and, for a song or two, helped us to forget about everything around us and focus on each other and enjoying that moment.
Through all of this, she’s never let anything get her down—you’d never know she’s been through three brain surgeries—she’s like a superhero that just keeps going! Her strength and wisdom beyond her years has become such an inspiration! And, she’s not only an incredible inspiration for me, but for her younger siblings (Silver and Sylis), as well! Bindi just turned 6 years old and is enjoying being a big sister to her younger sister and baby brother.
She’s strong, she’s smart, she’s active and she loves to run! Nothing is going to stop this bolt of lightning! She does her thing and I am so proud of her—she’s a hero to me.