“Your marriage must be so strong.”
I have heard this statement often over the past three years. My 3-year-old daughter, Allie, died of gliomatosis cerebri in June of 2013. My husband, Kyle, and I are still together, and our marriage has survived this tragedy. But the truth is that it has been extremely difficult to rebuild our lives after cancer stole so much from us.
Kyle and I married on June 12, 2004. We both had had easy childhoods and neither of us had ever struggled in life. Our marriage started out the same way. It was easy. We loved each other. We had good jobs. We got a rescue dog. We wanted kids, and I had no trouble getting pregnant. Our first daughter, Evie, was born. Then, a few years later, we were blessed with another daughter, Allie. Both girls were born healthy.
Evie and Allie were quite the pair. Evie loved being an older sister to Allie. Evie would come home from kindergarten wanting to teach Allie what she had learned that day. Evie’s favorite thing to do was to have Allie spend the night in her room. And Allie just loved everything about life. She was high energy but always easygoing and full of joy. Allie hugged everyone she met and often said, “I love everybody in the whole entire world!” Kyle and I had everything, and we knew it.
A violent wind blew in unexpectedly and our fairy tale went completely off script. One morning I went to wake Allie up, and she was unresponsive and seizing. Suddenly Kyle and I were living in a children’s hospital and watching Allie suffer: the endless tests, her tiny bruised veins, and medication that changed her personality. Kyle and I always agreed on Allie’s treatment plan, and we were such a good team during those long hospital stays. But we were also exhausted and terrified for what the future held. We watched as the brain tumor chiseled away at Allie’s function over 12 weeks. First her energy went, followed by her speech, and then her ability to walk. The seizures became relentless and her bowels shut down. During Allie’s final stay at the hospital, she coded and our worst fears had come true. The staff was able to put her on life support, and we knew this was the end. We were powerless to save our precious daughter from the aggressive tumor.
We spent our ninth wedding anniversary bedside in the pediatric ICU with Allie on a ventilator. We had to make decisions that no parents should ever have to make. Once the end-of-life plan had been put into place, the sounds on the vital machines were turned off. Kyle and I lay on each side of her and sang her favorite song, “Baby Beluga,” as the monitors eventually showed no signs of life. That is how our fairy tale ended. It was exactly nine years from our wedding date.
In the first month after Allie passed, we contacted Dr. Jeff Greenfield at the Children’s Brain Tumor Project. Kyle and I both agreed that we wanted to donate Allie’s brain tumor tissue in hopes of helping others. We knew it needed to be studied and better understood for the next child who would be diagnosed with gliomatosis cerebri.
Adjusting to our new reality at home started out ugly. Distance set in between Kyle and me, and I shut down emotionally. We worked more and talked less, and I wanted to spend more time alone. It was the only way I could find to still function with the heavy grief, and deep down, I wanted to run away. This wasn’t the life I had signed up for, and I was desperate to escape it.
However, Kyle and I were lucky. The pieces were already in place for us to survive this together. We had been surrounded by awesome people our entire lives. Friends and family rallied to support us, and each did what was in their power to help. We started sharing Allie’s story to raise funds for the Children’s Brain Tumor Project. We found strength from this and a renewed purpose. We began to see that Allie’s beautiful spirit lived on as we clawed our way back to each other. Our bond is richer now, and we share a perspective on life that very few can understand. With time and grace, we learned to love and accept the brokenhearted versions of each other.
As I reflect back on our struggles, I wonder how many other families have been ripped further apart from a pediatric brain tumor. Kyle and I are very fortunate to have pulled through this together, but not every marriage will survive the aftermath of childhood cancer. We are also energized to save the next young family from enduring such a hopeless and unfair situation.
And, in only three years since Allie’s death, we have already witnessed incredible progress being made. We have toured the new CBTP lab space, we have seen the data from the sequencing of every tumor sample, and we have viewed the live gliomatosis cerebri cells under the microscope. We have also united with other families from across the country to form the Children’s Brain Tumor Family Foundation, a 501(c)(3) organization. The foundation is an all-volunteer charity committed to raising awareness and funds for the Children’s Brain Tumor Project.
The fairy tale may have ended, but our new story has so much more depth. Our purpose is clearly defined. Together with the researchers and the other families of the Children’s Brain Tumor Project we fight, we rally, and we work toward a cure.
Kyle and I just celebrated our 12th wedding anniversary full of hope, and we thank every Children’s Brain Tumor Project supporter for that gift. — Kelly Fisher