“Amanda, it’s time to get your shot now! Go grab your Birthday Bear.”
I was diagnosed 21 years ago with a brain tumor when I was just one year old. When I think about having my brain tumor, I can remember the various scenarios and feelings that I went through. Throughout my treatment I can remember the child-friendly atmosphere of the different waiting rooms with the bright colors, Disney paintings and smiling nurses. The most significant and impactful times I remember are when my mom was the “nurse” at my home.
When I was diagnosed with a hypothalamic hamartoma (HH) at one, the symptoms of precocious puberty caused my parents to notice changes to my body at that young age. My mother gave me the injection I needed each month to halt the precocious puberty that was caused by the placement of the brain tumor. Each time I would get a shot in my leg, my teddy bear, named Birthday Bear, would get a “pretend shot” in his little stuffed bear leg right after, and then we both got a Band-Aid. My mom would look like she was giving him a shot, but the cap on the syringe was cleverly kept on! I can completely say, with certainty, that this whole approach, by involving my teddy bear, helped to ease the worry and anxiety that I faced as a young girl. I could have potentially had worse fear, not only with the needle, doctors’ appointments and tests, but also from the fact that I could not fully understand the situation that I was facing. After the shot was over I would get the pleasure of choosing a prize out of a gift-box my mom kept full of various stickers, candy, and toys! Birthday Bear even got to pick one out (so I technically got 2 prizes, wink-wink).
It’s hard to see that time in my life as a dark, depressing time, since you can notice that my parents did a fine job of reminding me that I am loved and special and tried to make the experience as “fun” as possible for me! Even though I am still living with my Hypothalamic Hamartoma today, because I did not undergo surgery to have it removed, I have been off the shots since the age of puberty, to let my life happen naturally. My neurologist does not anticipate my brain tumor to change size or effects, but I get MRI check-ups every five years to make sure. These MRIs make me reflect (there’s not much else one can do during an MRI!) about all the love and support I have had that has helped my situation.
Now, during my college years and planning, studying Non-Profit Administration and Business Management, I spend time pondering all the different organizations out there that help spread hope and joy to families with kids who have brain tumors, cancer, terminal illnesses, etc. I am excited about the possibility of working or volunteering for one of these organizations eventually, if it is the type of organization where I feel my heart is called.
People cannot truly understand what it is like to see a child go through a health scare until they have experienced it and the emotions themselves. I firmly believe that people are placed around others to be the light and create positive memories from negative situations. There is power in the fact that if there is one candle in a dark room, it has the power and ability to light up the room! For someone of any age newly diagnosed with a brain tumor, I’d say to remember to be thankful for each breath and smile. Live life filled with passion and purpose. Embrace the moments with the people placed in your life. A brain tumor is not the sole thing that defines your life. You are made on this Earth for a purpose. Sometimes it’s hard to contemplate why some humans have major health problems and others do not; however, do not spend your thoughts asking why, rather spend your time embracing and living your life and finding what you enjoy doing for yourself and others.
As for the parents of the loved one facing difficulty, remember that all the big and little things you do to help your child through this is very meaningful to them. The way my parents handled everything shows such grace and courage. I am so very thankful for the little things, such as “giving Birthday Bear a shot”. Those are the moments that make my heart realize it is overflowing with love for supportive families.
For those children and families going through tough times, it is okay to lean on those around you, whether it be your family, friends, or organizations such as Hope for Hypothalamic Hamartomas.
Written by Amanda (age 22)