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!

Saturday, August 13, 2011

A Reason To Celebrate

Piper received her LAST CHEMO yesterday!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  It will be working in her system for 3 more weeks.  Praise the Lord!  He is Good!  He has brought Piper through this part of her journey!  We are so grateful!  She has really been doing good.  She has even started to take a few steps here and there on her OWN!  That was really exciting!  We have a lot to celebrate!

I haven't found much spare time lately, and I am sorry for not keeping everyone updated as much as I'd like.  Piper has been doing well.  We have been going to clinic 3-4 times a week for dialysis, labs, and chemo.  We will continue to go to the clinic for dialysis through the end of August.  In September, we will start administering peritoneal dialysis at home every night.  Once we get settled in with the new process, we will only have to go to Duke once a week and then possibly once a month to see the kidney doctors.

Piper has had some issues with her blood pressure over the past week or so.  She is on a lot of BP medicines at this time.  Her pressures have been elevated a lot, though.  They have prescribed her yet another medicine just in case.  We now have our own BP monitoring system at home so we can check her pressures at any time.

We still have some other reasons for going to Duke.  We have a lot of tests and scans over the weeks ahead.  Once a patient completes their chemotherapy treatments, they have to have scans to confirm that all traces of cancer are gone.  We are praying for NED (No Evidence of Disease)!  We do not have the scans scheduled yet, but I will let everyone know when they are going to occur.  Next week the "tumor board" at Duke are meeting, and they will discuss Piper's case.  There are a lot of questions to be answered.  They have to decide if they are going to declare her remaining kidney as failed or not.  They need to decide if they will remove the kidney, if it has failed.  They need to decide if she will potentially receive a transplant, and how long she has to be cancer free before she may have the transplant.  So, there are a lot of unknowns.

We are continuing to pray that God will guide the medical teams to make the right decisions for Piper's overall health.  We know that He is in control.  Please continue to pray over the next few weeks for Piper as the chemo is working in her system.  Please pray that she won't have any fevers.  Please also pray for her blood pressure to become more stable.  We know that God will provide.