Katie has been battling Castleman disease since she was 18 months old. She at times has had a very difficult battle with her disease and has undergone several procedures, scans and hospitalizations, including multiple surgeries which attempted to remove the grouping of affected lymph nodes.
At the time of Katie’s diagnosis there were no clear answers to many questions and there was not a great deal of in-depth data or research available, making the battle for a solution very difficult. Katie has struggled for the last 5 ½ years with night sweats, fatigue, headaches, tummy aches, and a lack of appetite. She has endured countless hospital stays and many different forms of treatments. Katie had to endure many different treatments as we were trying to find something that would help her and eventually she responded to cytoxan. For 18 months she responded well to the cytoxan and it helped to alleviate her Castleman symptoms. Unfortunately, she developed hemorrhagic cystitis and because of this severe complication, we had to stop the treatment. The thought of having no other options was terrifying. Struggling to figure out the next steps, and what that meant for Katie long term was one of the most difficult times in our life. Because of the amazing advances the CDCN has made, Katie was able to start a different treatment.
Today, she is on sirolimus which has dramatically improved her quality of life and given her some of her childhood back. The drug is currently being evaluated in a clinical trial as a possible CD treatment, but so far has dramatically and successfully kept Katie’s favorite person (Dr. David) in remission for over 5 years. Since starting sirolimus, Katie has remained relatively stable, though with a weakened immune system, she remains vulnerable.
Finding the CDCN and joining in the fight to find a cure has been one of the best decisions we as a family have made throughout this journey. 6 years ago when we set out on a journey to find more information and a way to help Katie, we never could have dreamed we would have found the CDCN and the amazing team that works so hard daily to find a cure. Katie has been able to donate blood for research, enroll into the first ever CD national history registry ACCELERATE, and meet other CastleKids just like her. We could not be more thankful for Dr. David, the CDCN, the amazing team, and the Castleman family we now have. I encourage everyone to join the CDCN, help us spread awareness, join the Castleman Warrior Program, donate samples, enroll into ACCELERATE, and have your own voice in your battle. Each of us holds a piece to this puzzle, and together we can find a cure! This organization means everything to us, and being able to have a voice in Katie’s battle and fight alongside her has given us back hope in this journey.