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.