Marley was diagnosed right before her third birthday — she barely made it out of the hospital for her party — and it was a very scary time. She had retained fluid throughout her entire body, especially her abdomen. She was put on steroids, which helped tremendously, but she later turned out to be steroid-dependent. After trying to taper off the steroids for months with no success, her nephrologist started her on Cyclophosphamide for a six-month cycle while still tapering off, and it worked! She have been completely medication-free since March 2015, and she has shed most of the steroid weight.
As a family, we know we will have to deal with Marley’s illness as time goes on, and it’s still scary when a cold or even an ear infection can cause her to start spilling protein. We have learned what to do when and if things start to go downhill by educating ourselves. We participate in the NephCure walks, as well as the Kidney Foundation walks to meet other families like us. Just know, you’re not alone in this! Even though being diagnosed with something is so scary, there is still a great life to be lived.