Brenda's Story
It was September of 1998. I was ten years old and had just started fifth grade. I remember spending the summer before that year going to the pool every day and sleeping. Anyone who's had a ten-year-old knows this is typical: pool, friends, sleep, repeat. But even after the school year began, I'd go right to sleep when I got home, maybe eat dinner, and then go right back to bed.
For a couple days, my parents chalked it up to adjusting back to a school routine, but when it continued, they got concerned. I wasn't concerned -- I remember being excited to leave school one day for a doctor's appointment.
The visit to my primary care doctor revealed that I was anemic (low red blood cells) and my white blood cell levels were a little elevated, but otherwise there wasn't anything to indicate something was wrong. My lab results were sent to a specialist, and I went back to school. Soon, there was another doctor's appointment on the schedule. I thought, Awesome! I get to miss more school!
The appointment was at Blank Children's Hospital to do more blood draws and tests. My ten-year-old understanding of anemia was that my blood was low, like when your car is low on gas, so when the nurse took vial after vial of my blood, I told her I didn't have that much blood, so she should be careful not to take too much.
There was so much waiting, and I was so bored I'd rather have gone back to school. After what seemed like forever, they came back in to say they still weren't sure what was going on, but they wanted to do a couple more tests: a bone marrow biopsy and a spinal tap.
They explained to me what those would be like. I said, No, thank you. I'm no longer in need of your services, and I need to get back to school. Really, I think I just cried, because needles are scary and these were going to be really big needles.
would be like staying at a hotel or going to camp. What kid wouldn't like to do that?
What followed was three years of varying degrees of chemotherapy treatment, two hospital stays, two surgeries to place, then remove, a Port-A-Cath, hundreds of doctor's appointments, and countless blood draws, spinal taps, and bone marrow biopsies to track the cancer's progress.
You might think that death would be the scariest part of having cancer, but for a ten-year-old girl, the scariest part was losing my hair. It will grow back. You get to wear hats. Those were things adults said to me that were supposed to make me feel better, but they didn't. Losing my hair was a visible sign that I was different and that something was wrong with me. I couldn't hide my illness and pretend to be normal when I was missing all my hair.
I went through treatment from ages ten to thirteen (grades 5-7). I just wanted to fit in, to be cool, and I wanted people (especially boys) to like me. I wanted my classmates to notice my awesome new cargo pants or my Tamagotchi, not that I was bald and had a puffy face from medications. Having cancer marked me as different, weird, and uncool.
At the time, I took this all in stride. I still had friends, people liked me, and I was a good student. Plus, I quickly found out that if you make fun of yourself first, it's less likely anyone else will make fun of you. Now that I'm an adult and have kids that are this age, I can see what a profound impact this had on my psychosocial development.
By the time I started junior high at a new school, my hair had grown back somewhat, and I was surrounded by people who didn't know I was the cancer kid. I was determined to keep it that way. I was so ashamed and embarrassed of being sick and bald that I hid that part of my life. I never talked about having cancer with anyone -- even through my young adult years.
I've decided to shave my head at this year's St. Baldrick's event for a couple of reasons. First and foremost, I'm shaving my head to raise money to give back to research that saved my life. I wouldn't be alive today if it weren't for research and development of childhood cancer treatments.
On a more personal level, I want to shave my head to prove to myself that surviving cancer isn't something I need to keep being ashamed of. I'm shaving my head because I survived.
Thank you to Brenda for sharing her story!
You can donate to Brenda and all FMH St. Baldrick's participants here. Support our shavees and Wild Hair participants at our live event on June 20! We're excited to see you there!