10/15/2026
“It started with stomach pain and vomiting. I thought maybe it was something I ate. But then I got so tired—like can’t-get-out-of-bed tired.
One day I just couldn’t go to school. The next thing I knew, I was being rushed to the emergency room. The doctors didn’t know what was wrong. They ran scans, bloodwork, MRIs—but nothing made sense.
Eventually, they told my parents: ‘You need to take her downtown to Lurie Children’s Hospital.’ That’s when things got really scary. My organs were starting to shut down. I was holding onto so much fluid my stomach looked nine months pregnant. I had tubes coming out of my chest to drain my lungs.
I was barely recognizable—my arms so thin my bracelets slid right up past my elbows. It took two months to finally get a diagnosis: idiopathic multicentric Castleman disease. It’s this rare disorder where your immune system goes haywire and starts attacking your body.
There’s one FDA-approved drug for it, but it didn’t work on me. Neither did the next one. Or the one after that. At some point, chemo became the only option. I lost my hair. I lost my energy. I lost track of how many nights I spent in the ICU. And still—nothing was working.
My doctors started to run out of options. That’s when they reached out to Dr. Fajgenbaum, who studies Castleman. He told them about a brand-new lab finding—just weeks old. A cancer drug called Ruxolitinib might help. It had never been tried for my condition before.
But they gave it to me. I remember the date: July 30, 2020. 5 years to the date. That was the day everything changed. For the first time, I got better. And I stayed better. I’ve been in remission ever since.
Now I’m a college freshman, studying to become a nurse—so I can help other kids the way my nurses helped me. I know what it’s like to be the one in the hospital bed.
I want to be the one standing next to it, saying: ‘You’re going to get through this. I did.’” - Kaila Mabus
