True confession here: I hate—and I mean hate with a passion—pediatric brain tumors, which kill more kids than any other pediatric cancer. May is Brain Tumor Awareness Month and believe me, I am aware. In fact, the inspiration for Rally came from William Olson, who battled a brain tumor of his own. William played on the same travel baseball team as our oldest son Jonathan for a year. He was a starting pitcher—a very good pitcher, in fact. William took his time, was very methodical and won most of the games he pitched.
William also happened to be incredibly intelligent. One afternoon when he got home from school, he told his mom, Nancy, that the strangest thing happened in science class. He said he had his own private solar eclipse—that one minute, everything was normal and the next, everything went dark before turning light again. Concerned, Nancy notified their eye doctor. When he examined William, he knew immediately that William had a brain tumor. He told William and Nancy that they needed to see a neurologist the next day. William protested, not wanting to miss pitching the following day, but the doctor insisted. The next day, he began a long, 11-year journey fighting medulloblastoma, a pediatric brain tumor. Unfortunately, William never pitched again.
One evening, my husband and I were visiting William in his hospital room. By this time, William was a senior in high school and had relapsed. He was so heartbreakingly sick. I asked Nancy what I could do to help and told her I would not make dinner—we were way past dinner at this point—and she said that I could help by raising money for childhood cancer research. I said, “for brain tumors, right?” And to my surprise, she said no. You see, Nancy knew that every family with a child suffering from pediatric cancer needed both help and hope. She told me to fund the best research we could possibly find, no matter where it was.
So that is what we did and what we, at Rally, continue to do. While I do hate all cancers, especially pediatric cancers, I’ve seen firsthand what pediatric brain tumors do to these kids—it is just horrific. I have gotten to know so many pediatric brain tumor kids and I hate, with a passion, what is taken from them and their families.
When I think about those kids, I think about Rally Kid Nolan, who fought medulloblastoma the most common malignant brain tumor in children. His favorite color was slime green—how great is that?! He was the sweetest kid with the sweetest mom. She asked me to come to the hospital on the day doctors decided there was nothing more they could do for Nolan. I was in the room when child life services came in and made a mold of his hand. And after that, I held that precious hand as Nolan peacefully slept. He woke up and looked at me, smiled and said, “I love you, Mrs. Dean.”
I also think about Rally Kid Anna. She is the definition of beauty and grace; a phenomenal ballet dancer before brain cancer. Fortunately, Anna beat her pineoblastoma brain tumor, but the immediate side effects took her balance and sight. Now, she misses ballet every single day. Despite the horrible immediate side effects and the multiple new ones that are just now manifesting years later, she still moves with the beauty and grace of a prima ballerina.
I think about Rally Kid Hailey and how we celebrated—yes, celebrated—that at two years old she became the oldest living survivor of metastatic ATRT, a pediatric brain tumor. I also think about how she didn’t live to see the age of three. I miss her pucker kisses.
I think about Chip who loved all sports and all things outdoors. He battled medulloblastoma, and he now spends most of his time in a wheelchair, assisted by the most adorable service dog named Vera. Chip’s faith continues to inspire and challenge just about everyone.
I think about baseball-loving Carson, with #3 on his jersey, who was diagnosed with DIPG—the pit bull of pediatric brain tumors. There is a zero-cure rate for this very cruel, very fast-moving cancer. The standard of care and treatment for DIPG is one of the roughest I have ever seen.
I think about little Hagan fighting a stage three posterior fossa ependymoma brain tumor for most his life and how he loved to wear stylish driving caps wherever he went. I wonder if he wore one on his way to heaven last week.
I could go on and on as the faces of so many precious children fill my head and break my heart, but I know you get the gist. For the most part, if a child survives a pediatric brain tumor, the child’s life and the family’s lives are forever changed. So many children will never be remotely close to who they were before a brain tumor diagnosis. Almost all of them face a lifetime of physical, cognitive and psychological challenges.
I remember one Rally brain tumor mom, Tiffany, whose son Logan survived his brain tumor. She told me that she had to mourn the loss of her son and learn to love a new one. At the time, I didn’t understand what she meant, but now, I see the wisdom in Tiffany’s words.
Most people don’t know that the vast majority of brain tumors found in children are completely different than those found in adults, which means we need to conduct separate research. All of the brain tumors mentioned above are only found in children—-adults simply do not get them.
As we continue to push for more funding and research, I often think of William, who lost his 11-year battle with medulloblastoma. Because of William and his mom, Nancy, we not only fund research for medulloblastoma, but for all different types of pediatric brain tumors and pediatric cancers.
Today, in honor of William and all of the kids who earned their angel wings and those who continue to fight for their lives, we ask for your support during Brain Tumor Awareness Month. Whether you are “going gray” and raising awareness or would like to make a donation, every little bit helps us fight this debilitating disease.
I still hate pediatric brain tumors and pediatric cancers, but I love what we’ve been able to accomplish with your help.