"Almost 7"

Once again I start off by apologizing for not keeping everyone up to date on how we are doing. I have logged on my computer a million times in the past month and the anxiety gets so bad I just turn it off. Sometimes I believe we can live in this imaginary fairy tale and as long as I block out reality then it will be easier to cope, but that is not true. Reality with FA is every day in our life and many many of our friends also.

It is so hard to believe that Alicia will be 7 years old in two days. I remember the times when 7 seemed so long away and the times when I never knew if it would even come. She is getting to be such a "BIG" "LITTLE" girl.

The "BIG" part I am not exaggerating either. Alicia is back on steroids now and she is eating non stop. They finally took her off of the tpn at night and put her back on fluids over night due to her sugar level being to high now that she is on the steroids. When we were in Cincinnati a few weeks ago Alicia had a horrible case of GVH and it was in her mouth. Her little mouth was so sore but the steroids cleared it up in a few days but it also bought us another trip back to Cincinnati in a few weeks. We will be going back on the 9th of December to see Doc Davies. Hopefully she will start weening the steroids again then. Alicia also had an immune study done and the results were not what we wanted to hear. Usually a year post transplant your immune system should be working at 100% but with all of the complications Alicia had she is at best at 50% and she is going on two years post transplant so Doc Davies said NO restrictions will be lifted off of her til the earliest will be this summer. I just pray we get to make camp this year!!!!!!!!!!!!!!!!!!

I am feeling alot better. I have been seeing the doctor every week and the Cancer doc once a month, but I do feel alot better. I do have a few bad days though and I am learning how to just work through them myself.

Please everyone keep Dan and Nikki Mccarthy in your prayers. I read an update and I can just feel the pain my friend is feeling. We went through many difficult times together during transplant and they are very dear to me. Also Delia could be facing another transplant, she is a young lady I met at camp with FA so please keep her in your prayers.

HAPPY BIRTHDAY BABY GIRL

MEE-MA