May is National Pediatric Brain Tumor Awareness Month. Did you know that there are approximately 28,000 children in the U.S. living with the diagnosis of a brain tumor today?
Kase is one of these children. This loving, joyful and courageous little boy is in the midst of the biggest fight of his life – a fight that is beyond imaginable for most people. Yet, despite the bad days and difficult challenges that lie ahead, Kase remains a warrior through it all.
Kase proved he was a fighter from the moment he was born. He was born 2 pounds lighter than his twin brother, Knox, and spent a total of 7 weeks in the Neonatal Intensive Care Unit. During this time, he overcame every obstacle he encountered as a result of being born prematurely. Kase underwent multiple tests in an attempt to identify why he was born much smaller than his twin brother, yet no one could find an answer. It was a question that lingered in the back of his parents’ mind, even after their little boy was able to go home.
Despite always being a step behind his brother developmentally, Kase began to grow into his own unique personality that everyone came to know and love. To his parents, Kase was perfect. It seemed as if there was nothing that could stop him from growing into a healthy and active young man. However, what they didn’t know was that Kase’s childhood story would soon look much different than they would have ever anticipated.
When Kase was just 18 months old, his parents noticed that something wasn’t right. He became very lethargic and was vomiting every morning. He was prescribed various medications that would make the symptoms go away for a few days, but they would eventually return each time. Kase’s parents became increasingly worried and took him to a nearby hospital in hopes of learning what was making their little boy so sick. After multiple tests and scans, his parents found the answer they were looking for. They knew it wasn’t good news the minute the neurosurgeon walked in the room and quickly realized their world was about to turn upside down. The physician explained that Kase had a mass in his brain that was blocking the flow of brain fluid between ventricles, which was causing the vomiting. Kase was then diagnosed with Pilomyxoid Astrocytoma, a rare form of brain cancer that is most commonly seen in children.
Knowing that they would need to stay strong for their little boy, Kase’s parents immediately familiarized themselves with the “next steps.” Kase had surgery that resulted in the removal of 90% of the tumor and was put on an intense round of chemotherapy immediately after. As it became more evident that Kase’s diagnosis was rare and he would need specialized treatment, the physician informed his family that their son’s diagnosis was out of his scope and they should look for a better alternative for Kase.
Appreciative for the physician’s honesty, Kase’s parents began searching for other options. That’s when they found Dr. Amy Smith and her team at the Pediatric Brain Tumor Program at Arnold Palmer Hospital. Although the family had heard of Dr. Smith before, she was always a “Plan B”, as they had hoped to find treatment for Kase near their home. But, as Kase’s health has always been their first priority, they decided to take a leap of faith and leave the comfort of local care in pursuit of the best treatment for their little boy. Within days, Kase’s treatment was transferred to the care of Dr. Smith and her team.
According to Kase’s mom, Amy, there is no place they would rather be. She says:
“You find assurance in knowing that Dr. Smith specializes in pediatric brain tumors. You are confident in knowing that Dr. Smith is immersed in the latest research and clinical trials. She knows the best of the best.”
To Amy, what makes this team unique is their seamless communication. For her, there is comfort in knowing that if you talk to one person about something, Dr. Smith will know about it, too. This trait is one of the most important things this family could ask for, as they never feel the need to question anything regarding Kase’s treatment and care.
Kase's "dream team" wearing the Kase necklace in honor of Pediatric Brain Tumor Awareness Month
The importance of a support system: Kase’s Krusade
Not only have Kase and his family found support through Dr. Smith and her team, but they have also been supported and encouraged by family and friends in more ways than one. From setting up a fund to cover the ever-growing travel and medical expenses, to designing a one-of-a-kind necklace in honor of Kase and to help bring awareness to pediatric brain tumors, those who are loved by the family have carried them through this difficult journey.
As it is written on the Facebook page dedicated to Kase’s Krusade, “every great warrior needs something to fight for and an army to fight with him.” This army of family, friends and even those in the community who Kase’s family does not personally know, has given this family the opportunity to fight for a great warrior: their son Kase.
Today, Kase is a typical 3-year-old boy. Even though he has a ways to go in his cancer treatment, he continues to amaze those around him every day. He has the power to light up a room wherever he goes and brighten the day of those he comes across. He is truly amazing, as he puts on the armor of a great warrior to face his battle against childhood cancer every single day.
To learn more about Kase and join his “Krusade” visit www.littlekaseman.net or the Kase’s Krusade Facebook page.
To learn more about the Pediatric Brain Tumor Program at Arnold Palmer Hospital, visit the program page here.
And don’t forget – go gray in May in honor of Pediatric Brain Tumor Awareness!
In the time since this story was written, Kase has passed away. We are deeply saddened by the loss of this precious little boy. He will be deeply missed, but he will always hold a special place in the hearts of everyone here at Arnold Palmer Hospital that he encountered. Thank you, Kase, for showing us what a true warrior looks like and for allowing us to become a part of “Kase’s Krusade.” We will miss you.