Ciana woke up about a week before her 7th birthday with severely swollen eyes and ankles. We took her to the pediatrician and were immediately sent off to get labs. By the next morning, we were told to pack our bags and head to the hospital, where she would spend the next six days getting albumin and Lasix treatments to treat her new diagnosis of Nephrotic Syndrome. We had never heard of Nephrotic Syndrome, nor did we know anyone else that had such a thing.
Ciana was released from the hospital the night before her 7th birthday. The following two years were filled with frequent relapses, making Ciana steroid-dependent and requiring second line medications to try to reach remission. In March 2013, she had her first biopsy and received an official diagnosis of IgM Nephropathy. Around the same time, we also found a combination of immunosuppressants (Prograf/Cellcept) that allowed her to decrease her prednisone, eventually weening off. In December 2015, Ciana suffered her first relapse in almost four years. We had attempted to ween the Prograf in November.
We restarted the Prograf and steroids again, along with Cellcept, working to ween off the steroids again in hopes of attaining remission. Starting middle school and having to start on prednisone again (along with the cosmetic side effects) has been challenging, but Ciana is a warrior. She still goes to school every day, and despite the relapse she has not missed any days of school and continues to play competitive soccer.
Don’t lose hope! The journey is a difficult one and can sometimes seem like a bad rollercoaster, but our children are resilient. Ciana’s ability to smile and her amazingly contagious laugh is my reminder of why I cannot stop telling her story so we can find a cure.