Cytoxan journey continues (week four)

Emma is getting ready to begin her fifth week of Cytoxan and is still doing great. No noticeable side effects and she is still in remission!! We will officially be off prednisone after her last dose today....YEAH!!! First time since January!!!! I am really hopeful that this will work for her. I have been really frustrated with the frequent relapses we go through everytime she was almost off pred. We have been having her weekly blood tests done to keep track of her white blood cell count and....so far so good. Her count was apparently in the 8,000s the second week and then dropped into the mid 4,000s by the third week which concerned me but the neph said there was nothing to worry about.

My husband took her by himself yesterday to have her blood drawn for this week. He was really nervous becuase she is usually a "mama's girl" and he figured that he would probably cry more than she did if she got upset and didn't want to have them stick her with the needle. I told him "be strong"...you are the adult here...set a good example (ha...ha...ha)....you can cry on my shoulder after you get home". He called me when they were done and told me that she didn't cry AT ALL. He said that he had told her that all he wanted for his birthday (which was yesterday) was for her to be a super big girl and get her blood work done with no crying. He said that they even had to stick her twice but she was a trooper and didn't shed one tear. The nurse apparently told her that they were having trouble getting her "Emma juice" and so they had to stick her in the other arm. Emma told me that her juice is apparently strawberry flavored. She got two dinosaur bandaids (which are her favorite) and she was on her way. I was kinda jealous that I missed out on seeing her be so big!!!

We haven't gotten her results back from the test that was done this week so I am keeping my fingers crossed that she didn't drop anymore. I know that the whole point of this med is to shock her system but I don't want her to get sick from being on a medicine that is supposed to be helping...and seems to be working so far!!! Anyway, just an update on Emma's continuing journey with MCNS. Any parents who may have suggestions or just want to share with me about their experiences with Cytoxan, your comments are always welcome!!!

Keep us in your prayers for spontaneous remission that lasts FOREVER!!!!!