Cytoxan journey (week five)

Well Emma is about half way through her fifth week of the eight week cycle of cytoxan and is going GREAT!!! I feel so blessed that our doctor decided to try and use this treatment on Emma becuase she really seems to be responding to it!! We have only noticed two side effects from the medicine so far. The first is the fact that her appetite is about a third of what it used to be on the prednisone. She used to eat like a monster all day long when she was on the pred and now it seems like we have to bribe her to finish a meal. She has started to lose alot of the weight she gained while on the steriod for the past 10 months which is great. She is starting to look like the "Pre-Nephrotic Emma" before she got sick. Her face hasn't completely gone back to normal. She still has the chubby cheeks but it is definately less "moon shaped" that it used to be. The only other side effect (and the one that bothers me the most....even though it is vain) is the thinning of her hair. She has super thick hair so fortunately its not really noticeable unless you are looking for it. But, as her mom, I can really notice it. During her baths and when I brush and blow dry her hair I can see it falling out quite a bit. Fortunatly we only have three weeks left and I know that her hair will grow back so I am thankful that that seems to be the worst of the side effects! If I had to choose between her being in remission and her losing her hair.....I am going to choose the remission EVERY TIME!!! Hair loss is nothing compared to the roller coaster that is Nephrotic Syndrome!!!

I have also been posting about her "objections" at the doctors office about getting her blood drawn every week. I posted last week that my husband took her on his birthday and for the first time she didn't cry at all. Well, he took her again all by himself and she didn't cry AGAIN. They even had to stick her in both arms again to find a good vein and he said that she just sat there like a big girl and didn't say a thing. I have decided that maybe it was me that was causing her to have the "outbursts" since she seems to do great when my husband takes her without me...ha..ha.ha!! I told him that now he has the duty of taking her every week since she does so great with him!! She is getting to be such a big girl. It never ceases to amaze me how resiliant children are. Even though she has been through a lot since being diagnosed with this conditions nothing seems to phase her for long. She is a normal thriving 4 year old that can't wait to start Pre-K in the fall of '09. I think that has been the worst part of this for her. The fact that she has been on "lock down" with the different meds she has been on. She hasn't been in a school setting since January when she was originally diagnosed. She has stayed with in home daycare providers but has not been back to an actual daycare with lots of other kids. Emma is such a social little girl I thinks she misses the interaction with kids most of all!! I really look forward to sending her back to school when she gets off the cytoxan and gets a clean bill of health. Although, I will feel sorry for the first teacher that gets her in their class. She has been home for so long or at least in a setting where she is one of a very few number of kids that she had become very BOSSY!! She thinks she runs the universe and doesn't have a problem telling you if she thinks you are doing something out of line. She is a really good kid but we have probably catered to her needs TOO much while she has been sick. She will get a dose of reality when she starts school. It will be interesting to see if she had behavior issues once she realized that she has to conform to classroom rules!!!

Thanks to everyone who has posted responses to my questions and journal entries over the past months and to all of you that have included us in your prayers. I believe that prayer is one of the biggest contributors to Emma's improvement. My grandmother told me when she was here for Thanksgiving that an entire congregation in Alabama where some of our family is from is now including Emma in their prayer circle. That is the power of God. We speak to Him through prayer and I believe wholeheartedly that He does hear us and that He does answer our prayers!!!! Put your trust in God and he WILL provide. Amen!!