Fighting the good fight

Madison Kusky, 14, known as Madi to family and friends, lights up a room with her smile, but the Fruitland Park teen’s health has been anything but bright recently.

She is battling a rare brain tumor.

Her long, arduous journey began the summer before eighth grade. She was losing weight and had extreme fatigue. At first, doctors suspected anorexia, but her mother Jamaica and her counselor didn’t. As a result, Madi endured test after test. She fell asleep at school or doing homework but had no memory of these lapses.

When vision problems developed, her mother took her to University of Florida Health Shands Hospital in Gainesville where they received a shocking diagnosis—a rare brain tumor.

When her mother broke down, Madi felt overwhelmed. “I had never seen my mom cry. She’s a pretty tough girl. I didn’t have words, and we all cried,” Madi says.

Though the freshman at The Villages High School remembers asking, “Mom, am I going to die?” No one had any answers.

“I stayed in the hospital for two weeks, and every single day I asked my mom, ‘What’s going to happen to me?’”
While other 13-year-olds were hanging out or shopping with friends, Madi was under a watchful eye as her mother checked her temperature and her white blood cell count was monitored during weekly trips to Shands for chemotherapy.
“I have the most amazing chemo nurses in the world! They would sit with me and let me braid their hair, and they always know how to put a smile on my face,” she says.

From the beginning of her ferocious fight, Madi relied on her deep faith and the support and prayers of family and friends.
“My faith really came in when I asked God to keep me from getting sick after the chemo, because I just could not handle it anymore,” she says. “I definitely can say my faith was all there when, after the chemo, I didn’t get sick at all!”

Though it was difficult for her, Madi admits on some of the toughest days, she learned to rely on those closest to her. “Whether it’s my mom or my friends, I have an amazing support system,” she says.
Madi continues to receive strength and encouragement through friends and family on Facebook, where her mother keeps followers informed of her progress. Knowing she has that support system keeps Madi strong.

So does the encouragements she received at Camp Boggy Creek in Eustis this summer. She refers to the week as a “life-changing” experience. The camp, founded by the actor Paul Newman and General H. Norman Schwarzkopf, gives children with serious illnesses a week of forgetting of fun activities with medical supervision.
“I loved it,” Madi says of the camp. “One counselor really stuck out for me. Her name was Virginia. I asked her to sit by the side of my bed and she wouldn’t leave until I had fallen asleep,” Madi says.

A highlight of camp experience for Madi was hearing other campers praise her positive attitude. “People from other groups said, ‘I want to say thank you to Madison for always having a smile on her face, for making me smile.”

The compliments touched Madi deeply. “It just made me feel so good!”

She says she felt like family as soon as she arrived at Camp Boggy Creek. “It’s just like a fresh start, like nothing even matters, all the problems, they just disappear. It was amazing!”

Madi is grateful to Miss Jenna from Shands Hospital who told her about the camp and says she will definitely be going back. Recent test results indicate the tumor is shrinking, surprising her doctors, and her prognosis looks good. To follow Madi’s progress on Facebook, look for Team Madison—Stay Strong Beautiful.