Good News......

I wanted to post some good news for everyone to share. I know that alot of times all we read on this site is the bad news about our childrens condition whether it be MCNS or FSGS and I hope that it will be uplifting to those of you who are battling this to read something good for a change!!

My daughter Emma was diagnosed with MCNS back in January of 2008. She immediately responded to Pred but could not get fully weaned off the meds. In November, her neph suggested we put her on Cytoxan since she was apparently becoming steriod dependant. My husband and I weighed the options and decided to go with his advice. She started an 8 week course of the drug in early Nov and finished up the last week of Dec. She was officially weaned off the Pred the 3rd week into the Cytoxan treatment. She has now been completely drug free and still testing negative EVERY DAY for almost three full months. I can't explain how much we feel God has blessed our daughter!! Our prayers were answered! After battling through almost a full year of pumping her full of Pred everyday (or every other day) and watching her suffer through the side effects (i.e. moon face, joint pain, weight gain, displacement of fat on her body) it feels like a huge weight has been lifted off our shoulders. I thank God daily for this blessing.

I know that it may not last forever and that the odds are that she will probably relapse again over the coming months or years but for now....I just feel great! Emma has lost the "moon face" that she has had since January of 2008 and is looking like her "old self". Now that the weather has started to warm up she is able to go outsite and ride her scooter and big wheel again and we are able to take her to the park to watch her big brother play baseball. It is amazing how much you take these small things for granted until you have to take them away from your 4 year old for such a long period of time.

Emma lost quite a bit of her hair while on the Cytoxan treatment and we are still waiting for it to grow back but other than that....I feel like we have our "pre NS" Emma back. The thin hair I can totally deal with!!!!

My heart and my prayers go out to each of you who have a child who is fighting this battle or if you yourself are going through it!! I pray for each of you to be able to experience the "light at the end of the tunnel" like we are experiencing right now.

I hope the Emma's story can lift some spirits! I pray for Emma that she is one of the lucky ones that will never again have to deal with this for the rest of her life. But for now, we just pray daily that she remains in remission and remain faithful that God has her in His hands and that He has a plan for her life......