Crazy amazing. That’s how Willow Tolly describes the care she received at St. Louis Children’s Hospital over the past four years.
“I love this place. I love everything about this place,” she says, smiling a broad, light-up-the-room smile.
Talk about crazy amazing. How this 18-year-old has been able to maintain a positive attitude about anything is a little bewildering after hearing about her harrowing journey.
Willow was born with a genetic time bomb that detonated her freshman year of high school. A mutation in one of her genes causes chronic pancreatitis (CP), while a different mutated gene unfortunately makes CP nearly impossible to treat.
CP results in progressive, irreversible destruction of the pancreas. Along the way, it wreaks havoc on its victims’ lives. Through her sophomore, junior and senior years, Willow was hospitalized more than she was at school. Instead of enjoying a promising cross country and track career and hanging out with her friends at school, she became close friends with her Children’s Hospital 8 West nurses.
Her “crazy amazing” gastroenterologist, Dr. Faris Murad, who performed several advanced endoscopic procedures to remove the pain-inducing stones that formed in her pancreas also became a mentor to Willow.
Ultimately, her painful pancreatitis attacks became too frequent to manage, and Willow's only hope was to have a total pancreatectomy involving the removal of the pancreas, spleen, gall bladder, appendix and part of the intestines.
“I didn’t even know you could live without your pancreas,” Willow says. In fact, you can, but not without complications, as she learned in the months following her return to her home in Edwardsville, Ill.
“I was doing great. I had used summer school to make up what I missed my almost-entire junior year and was sailing through my senior year.”
That is, until her second semester. While her friends were gearing up for prom, graduation and a fun-filled summer before college, Willow battled on. Doctors thought she was going into sepsis, but then found that she had adrenal insufficiency, which didn't allow her body to fight off infections.
“Basically, my pituitary gland was pooped,” she says. “I’m so lucky to have had such a great team on my side. I know I could not have gotten through the last four years without them.”
Now for some good news, and there is plenty of that. In spite of missing so much school, Willow graduated, even earning an A in advanced placement biology. This fall she’ll be attending Greenville College to pursue a double major in biology and chemistry, a big step in her quest to become a surgeon.
Meanwhile, to pay all that “good fortune” forward, Willow joined the hospital’s Teen Life Council. She played a key role in making the second annual Teen Prom a success and is very interested in plans for improvements to the 8th floor Teen Lounge, underway with funding from St. Louis Children’s Hospital’s Employee Giving Initiative.
“It’s vital that teens at the hospital are given some space,” Willow says. “And what’s great is that the hospital values our opinions and includes us in discussions of that what that space looks like.” Even one more reason to love this crazy amazing place.