We are Normal!!!

They called from Chicago yesterday and said that all of Kya's labs came back perfectly normal!!! Her aldolase was 5.1 right in the center and everything else was in the normal ranges also. We are so excited that she is responding so well!

So what does this mean? Many people have asked if she is in remission and the answer is NO. She is responding to medicine and is medically stabilized. She is no longer on infusions, steroids, or methotrexate. (yeah!) But, she is still on cellcept and plaquenil which are very strong immunosupressants. She also takes about 6 other meds and vitamins a day. She is doing well right now and right now the plan is to hold where we are until December. If she is still maintaining in December they plan to start tapering her cellcept. This tapering process will be slow and closely monitored. They will try to make sure that she does not have a flare as we taper. This is the hard part and the very carefully managed part. Too fast and she could flare which would make us have to start all over. If she gets sick, she could flare and we would have to start all over. Just a little stressful for mom and dad trying to decide how to keep life "normal" and be smart about exposing ourselves and Kya to all the risks. But, we know that God is going to take care of her and she is going to be just fine!

When will she be in remission? Who knows! She will not be considered "in remission" until she is off of all medications and all of her levels are normalized without medications. This could be soon after tapering or this could be never. Some kid do very well on medicines, but they just don't handle the tapering very well. She could get completely tapered off and pick up a bug and go into another flare. She could get completely tapered and this ugly disease never show its face again! Each child is different and it is about a 33% chance for any of the above to happen. We are praying that God will just cure her of this and we never have to worry about it again! That is what Kaysa says is going to happen and anyone who knows Kaysa knows that she has a tight connection with God!

Thank you so much for all of the prayers and support! It has been an amazing journey so far. I have made many new friends and have grown closer to people I never imagined I would. We have grown closer as a family, as christians, and as friends! I appreciate our prayer warriors and I beg you to continue to pray without ceasing! You are seeing a miracle in Kya's life. Thank you!

Kalee