My son Walker was diagnosed in September 2016 at age two. Over the first nine months, he was hospitalized four times for albumin and Lasix treatments and once for a kidney biopsy. We were relieved with his MCD diagnosis. Walker quickly became steroid dependent. Not sure if ya’ll have ever dealt with a two-year-old on steroids, but it is no walk in the park! He relapsed every time we tried to ween him off.
After his fifth hospital stay in May 2017, we decided to try another treatment. It was a tough decision to make, since Rituximab had not been given to very many kids Walker’s age before. He had his first infusion in July 2017. He was hospitalized one more time because the treatment attacked his neutrophils and he couldn’t fight infection. Luckily, his counts went up after a five day stay and he came home. We weened him off the steroids and he DID NOT RELAPSE! It seemed too good to be true! And still does! Walker has been in full remission with no medications for seven months!
We pray everyday that he stays healthy. It is so hard to see someone so small struggle like he did for so long. I know life gets busy, but I think taking the time to fill out the surveys in the NephCure patient registry is so important! The more information that I can give to try to better the treatment and life of another child, the better. Contributing to this important research is vital to finding better treatments and hopefully a cure someday, so that no other little ones will have to go through what Walker has gone through the past year. STAY STRONG!