Please Note

I am not a medical professional. I do not have any medical training. I am the mother of a little girl who has been diagnosed with Aniridia, Wilms Tumor, and Kidney Failure. I am writing about my experiences. I am not always going to be accurate with details, but I try to be as accurate as possible. Please do not use this information to diagnose or treat yourself or anyone else. Please consult with a trained medical professional for any treatment or diagnosis.

Search This Blog

Sunday, August 28, 2011

Busy Times

I have found that it is rather difficult to make time for writing in the blog when we are at home.  When we are in the hospital, I can't do much after Piper goes to sleep because I don't want to wake her; so I type.  When we are at home, I enjoy my husband's company, watch TV, clean up the house and other things once Piper goes to bed.  I definitely value spending time with my husband over computer time, so it is a struggle.  I apologize for not keeping everyone updated as much as I probably should.

Piper has been doing well, but we have remained very busy.  We have had to go to Duke at least 3 times a week for hemo-dialysis.  She has also required a lot of transfusions lately.  She had 2 platelet transfusions and 1 blood transfusion within 3 days!!!  That's a lot for a little girl to deal with.  The last round of chemo has really wore her down as well.  She hasn't been as energetic or eating very well.  She is gradually getting better, though.  Please pray for her strength.

Wednesday will be out last day that we have to go to Duke for hemo-dialysis.  We will start doing peritoneal dialysis at home Thursday evening.  I am a little nervous, but I am sure that it will go well.  Once we get started with dialysis at home, we should only have to go to Duke once or twice a week!  I am really excited about that.

The doctors have decided to let the remaining portion of Piper's kidney stay for now.  They wanted to remove it, but decided it would be best to not remove it until time for transplant.  They have also confirmed that she only has to be cancer free for one year before they will do the transplant.  So, next year at this time, we will be preparing or hopefully recovering from her kidney transplant. 

Please pray for Piper to regain her strength and to remain healthy and cancer free for the next year!  She is a tough little girl, and I know that she can get through this next hurdle.  Her hair is starting to grow back quick, thanks to the Minoxidil (blood pressure medicine).  We hope to have hair bows by Christmas; maybe even Halloween!