Emma's journey continues....

It has been a while since I posted a journal entry. I have posted a few questions here and there over the past several months and have gotten great response from all the wonderful parents who make up this support group. I really appreciate all of the support given so freely on this site. I think it does wonders for the psyche of the parents who are new to this condition.

Emma has continued to battle her MCNS since she was diagnosed in January. She has not been able to be fully weaned off prednisolone at all over the past 10 months. She relaspses about every 30-35 days. My husband and I have tried every excuse under the sun to figure out what is causing her to relaspe each time. Twice it was a bug bite and we were SO SURE that she was allergic to bug bites and that was the reason. Another time she ran a low grade fever and had a runny nose for less than a day and we were SO SURE it was the cold that caused the relapse. Once I looked back at the records we kept of her dosage schedule and her pee test results I noticed a pattern. 30-35 days in remission then she would relapse for 7-10 days. This led us to the conclusion that she is now steriod dependant.

We took her back in July to have her 6 month blood work done and were pleased to find out that her creatine levels were perfect, her albumin levels were perfect and her kidneys are in perfect health. The only issue was her cholesteral was a bit high but her neph attributed that to the predinsolone more than anything. He said once she was weaned off that it would go back to normal. She has been doing great other than not being able to get past her 1 1/2 tsp every other day dose of medicine. She hasn't had many side effects other than the moon face and the occasional temper tantrum (but she is 4 so that comes with the territory...I don't know if I can blame that on the meds). She has woke up a few mornings here and there saying that her legs are hurting which breaks my heart. We just give her a little extra attention and rub her legs until she feels ready to get up and face the day. Other than that I have been so proud of how well she is dealing with this condition. We haven't been really strict about limiting her salt intake unless she is relasping and she seems to know when she is peeing green or blue on the pee sticks that she can't have salty foods. She is really smart that way. We have noticed that even when she is relasping she never swells (knock on wood). We still lower her sodium intake to less than 2000mg a day but we have yet to notice ANY swelling in her during a relapse so that has been yet another blessing from God!!

We just recently took her back to her neph and he has now decided to start her on an 8 week cycle of cytoxan. I was really scared when he first suggested this medication due to the fact that is is primarily used for chemotherapy. I had imagined in my head her looking like a cancer patient losing all of her beautiful hair and being sickly and weak while on the meds. Our neph assured me that the small dosage that he was prescribing to Emma would not give her any of those side effects I had imagined. She took her first dose of cytoxan on Tuesday of this week so we are praying for the best! Her neph told me that there is an 80-85% chance that this medication will give her a long term remission and that in a small number of cases can cause spontaneous remission forever (which would be what I am hoping for!!). Either way I am really glad to just be trying something different. It was such a let down every month when we would start to bump her down a dose and she would immediately relapse. It was like starting from scratch over and over again. Very discouraging!!

I am extremely greatful for everything in my life. Just when I start to jump on my own personal pity train about how sad I am that Emma can't get over this I always think to myself........someone has it worse than me and I should pray for them more than feel sorry for myself!!! I am blessed with a wonderful husband, a great son who has been a trooper through all of our ups and downs with Emma and an awesome daughter that is my little hero!! We have also just been blessed with another child. I am due to deliver Barber baby #3 in April of next year and am truely greatful for all of the blessings in my life....no matter how big or small. So, to all of you parents, grandparents, siblings or if you yourself are battling this condition. Keep your head up and your eyes to the Lord and he will answer your prayers. Maybe not on your time schedule but, He will provide if we are faithful and lay our troubles at His feet.