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.

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Friday, September 14, 2012

It's Been A Long Week

Piper watching the "fishies" at Duke.

I am so tired of driving back and forth to hospitals!

On Monday, I had to go to UNC to visit a social worker.  This is just one more of the items to check off of the list.  I am not sure what the social worker was really supposed to do for me.  She asked me the same questions that everyone asks me, and couldn't really answer any of my lingering questions...

On Tuesday, Piper and I had to visit her oncologist at Duke.  We need him to view her CT scans and give his OK for her to have surgery; meaning her scans show no "evidence of disease".  Well, her scans do show this, but UNC didn't actually scan everything they were supposed to.  They only did a CT of her lower abdomen.  So, Piper has to have another CT done on the 24th.  We're having this one done at Duke.  They can read the scans pretty much the same day.  This is very frustrating as she will have to be sedated again, and that is such an ordeal.  She simply will not lay down with other people around, so sedation is necessary.  I am grateful that we were able to get her scheduled so soon.  It typically can take weeks to get on that schedule!

We had Wednesday off...  no appointments...  we stayed home and learned the lowercase letter "d"!  Emma was thrilled!!!

On Thursday, I had to drive to UNC for an appointment with a psychologist and the "final" appointment with the surgeon.  Well, that was the plan anyway...  On my way to UNC, I received a call.  The psychologist had to cancel her appointment.  I waited weeks to get in for this appointment.  I was not happy!  I explained my "unhappiness" to the caller, and she kindly agreed to "see what she could do".  The surgeon agreed to meet me earlier, so I didn't have to sit at UNC for hours waiting for that appointment.  The surgeons were wonderful.  They said their schedule is pretty much open at this point.  They do all kidney transplants with living donors on Tuesdays.  Once everything is approved, we should be able to schedule surgery quickly; possibly the following week!  She stated that it is very likely that surgery will be in October!  Now, if we can just get Piper's checklist completed, we will be doing great! .........  I received a call later in the day that the psychologist can see me this morning (Friday) at UNC.  So.....

This morning (Friday), I get to drive to UNC again!!!  (lucky me!)  I am fairly certain that the psychologist will be asking me the same exact questions that everyone else has asked me.  I will give the same answers, and I will come home.  This, however, will be my last appointment for my donor workup.  I should then be approved next week.  Please pray that this happens!!!!  It will be so nice to have something "done".

This has been such a roller coaster.  There are so many unknowns that you have to deal with while on this journey.  It is very mentally and physically exhausting.  I am so grateful for all of the prayers and support for our family.  I'll try to post next week as soon as we hear something!

Monday, September 10, 2012

Here's What We Know So Far ...

So, we still don't have all of the answers that we need yet.  We do know a few new things, though. 

As for the "living donor" workup that I've been going through.  I have not been "officially" told by the doctors yet, but the coordinator that I'm working with has told me that my results have all come back normal for all tests, including the special test to determine if my kidney stone was from a hereditary condition or not.  I am so excited about these results.  I have to meet with 2 more people on Thursday, including the surgeon.  That will be the last appointment before I can officially be approved!  Praise God!!!!!!

As for Piper...  she had her CT on the 5th, and she did awesome.  Her results came back great.  Nothing has changed.  We had never received any word on the meeting with the surgeons, so I talked to her doctor last week.  I am being told that there are a few things they want to see ....  They wanted to see a clear CT that showed 1 year "officially" cancer free, they want Piper to have one more visit with her oncologist at Duke so he can write a letter clearing her for surgery, and then .....  they will re-present her case to the board towards the end of the month.  We were able to schedule Piper's appointment with her oncologist for tomorrow.  He is awesome, and he always does whatever he can to make things easier for us!!!  So ....  I am being led to believe that once the team sees all of these things, they should be ready to "list" her.  That means that she will be put on the actual kidney transplant waiting list.  If a kidney was to become available before surgery was scheduled, then she could have that kidney instead of mine.  Otherwise, we will proceed with surgery, and she will get one of my kidneys.

So, please be praying for God to bless our family with patience as we are (hopefully) nearing this goal.  It has become quite difficult to feel content and at peace in the midst of this "storm".

We also have some amazing news about Miss Piper!!!!  She is so awesome, and she just keeps reminding us of it!  A little over a week ago, we changed her bed to a toddler bed.  We were extremely nervous because of all of the dialysis tubing and her machine, but she has done amazing with it all.  She stays in bed, and she waits for us to get her up in the morning.  This is such a huge step in the right direction. 


Piper has started eating better and better.  On Saturday, she didn't even eat any baby food!  She ate (grilled) chicken nuggets and applesauce at Chick-fil-a, and she ate grilled chicken and steamed broccoli for dinner at Olive Garden.  She chewed and swallowed the food!!!!  This is such a small thing for most 2 year olds, but for Piper, this is a MAJOR milestone!  We are so proud of her!

We praise God for all of these milestones.  Life can be really ugly if you forget to look for the blessings in your life!