Welcome to the Benign Braves Kids Team! This is an area for children up to age sixteen years old. This space is for kids to connect who missed out on being a child. Perhaps your education and career is being compromised because you missed school during treatments and during your recovery or your treatment crushed your future dreams. You can play video games here, learn about the brain, or just try to make sense of your chaotic life. It is still shocking to me that I am emotionally about a decade younger than my biological age. It is because I was so ill and wasn’t able to mentally develop like other kids and teenagers. What made it even more difficult was that I was never able to meet other children in my situation. I was able to meet kids who had cancer but, there was no group representing my diagnosis. This area is dedicated to the many children who are dealing with their benign brain tumor diagnosis and its aftermath.
I learned my carefree existence ended the day that my brainstem glioma was diagnosed. My world became about hospitals and IVs. Follow-up MRIs and the “what if it grew” anxiety became routine.
I missed a lot of school while recovering from my surgery and once I returned my grades started slipping. I was full of insecurities. I was embarrassed by my wig and disappointed that I could no longer keep up my grades. And I was terrified of falling down the staircase or of getting trampled by students during classroom changes because my balance was now very unsteady. One time in science class my lab coat was not able to go over my head and wig. I had to go in the back of the classroom and have my teacher help me take my wig off. Although I loved my teacher, that felt like such a violation. All of these experiences (along with chronic pain during my college years) have negatively affected my education and consequently impacted my career. I'm sharing my experiences with you in hopes that children today start speaking about what they're going through.
I want this to become a space where kids get to remain young, feel normal, and where they can connect with others who are also diagnosed with benign brain tumors.