Nick after Prednisone

Nick's story:

In August of 2006, it started to appear as though Nick, three years old at the time, was gaining weight. Over a period of 5 days, Tom and I realized something was wrong when Nick had swelling from his eyelids to his ankles. He was suffering from severe edema. We brought him to an on call doctor on a Saturday, and by the end of the visit I was given a slip of paper and told to contact a Renal & Transplant facility in Springfield, MA. Needless to say, I was in hysterics at the end of that visit. On Monday, we went to visit our regular pediatrician, where he ordered a series of urine and blood samples. It took a few more days until we received the diagnosis of Nephrotic Syndrome.

Once he was diagnosed, we decided to go to Children's Hospital of Boston for treatment. Nick was put on Prednisone, which is a steroid to help put him into remission. Once remission was achieved (where he wasn't testing positive for protein in his urine), he was weaned off of the Prednisone. Unfortunately, he relapsed when he was almost off of the medication. This scenario occurred repeatedly for the past three years, with our longest remission being achieved early this year while Nick took Imuran (an immunosuppressant) in addition to the Prednisone.

His remission lasted for four months, but he relapsed again in June of 2009. At this time we decided, based on the advice of our doctor at Children's Hospital, to start a treatment of Cytoxan in conjunction with Prednisone (yet again). Cytoxan is a chemotherapy drug, but has been known to put Nephrotic Syndrome patients into remission for longer periods of time.

I can't begin to tell you how painful it is to see your child go through the physical and emotional stresses that Nick has gone through. Not only does the disease affect him, but the treatments to help him have severe side effects as well. Throughout these three years, Nick has been on up to 5 different medications in an effort to put him into remission. Some days it feels like we're operating through trial and error with our six-year-old's health and well being, but that's the only option we have at this point.

That being said, for those of you that have met Nick, he's one of a kind. There aren't enough words to describe his amazing personality. People tell me he's going to be in entertainment when he's older.  I've always said he has his personality for a reason -- so he can get himself and the rest of us through this disease.

His outlook is promising. When diagnosed as a child, chances are pretty good that you will achieve "permanent" remission by the time you hit puberty, but until then, we keep our fingers crossed. So, thank you for taking the time to read this.