Connor F.

Child, Minimal Change Disease

That Sunday evening, late in November, is one I will remember for the rest of my life. About two weeks prior to that night, Connor became sick and the pediatrician started him on Amoxicillin. After 7-10 days he got better, but something still wasn’t right with him. After a few more days, we took him back to the doctor and they put him on another antibiotic.

Then, that Sunday evening as I was getting him ready for bed, I just couldn’t believe how big he was. He is big for his age, but when I took his socks off, he just looked swollen. He also had a red rash around his butt that told me something more was going on. My wife and I then decided to take him to the emergency room at Grandview Hospital. They are a great hospital staff and hastily tested him while making us feel very welcomed. The doctor came back and said his protein levels were high, and that he wanted to get him treated at CHOP. We then knew this was getting serious. My wife and Connor boarded the ambulance late Sunday evening, headed to CHOP.

I went home to be with my daughter, but came down to CHOP the next day. Connor was very swollen and there were a bunch of doctors in the room. I was in a new territory and very nervous. After hearing he had Nephrotic Syndrome, MCD, I really wasn’t that upset at the time — I don’t think I fully grasped how it would affect Connor and our family. The CHOP team was great, the hospital was very comforting for Connor, and we left in about a day.

Since that November night, Connor has relapsed about 4 times. Our first doses of steroids were the worst. I had to get on top of him one night because he was scratching and hitting himself. After a few weeks he started to calm down more, but anytime we increase the steroids he gets very moody. We are now in his fourth or fifth relapse, and once he goes into remission again he will start on Cytoxan (which I am very nervous about). I recently decided to really fight for Connor by educating myself, getting involved with NephCure, and trying to be a better father, husband, and neighbor. I am glad I met some great people through the NephCure forums, and look forward to working towards a cure.