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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Wednesday, November 23, 2011

Piper's Eye Appointment

Piper had her appointment today at Duke Eye Center.  It sounds a little funny, but they had to dilate her eyes.  Obviously, it wasn't for the purpose of making her pupils larger.  Apparently, they needed to dilate her eyes so she couldn't change her focus while the doctor was examining them. 

She is very near sighted.  We already knew that, but apparently now they know her prescription.  Ordinarily they would have given her glasses today, but they don't want to add any new stress for Piper yet.  The benefit of her having glasses now compared to a few months or a year from now doesn't justify the stress on Piper.  Also, there is no sign of glaucoma at this time.  Yeah!!!!!!!  Her cataracts have also not changed much.  This is great news.  We aren't really ready to deal with that surgery yet.

So, we go back to the Duke Eye Center in March. 

Her next doctor's appointment is scheduled for December 7th.  She needs to visit her surgeon, Dr. Rice, to have him look at her tummy.  They think there is a small whole/leak in her peritoneal dialysis tubing.  They saw a pocket of fluid in her abdomen when they did the CT last week.  They say this is common and routine, though.  So, hopefully, we can get that taken care of quickly and easily.  I was told it is an outpatient procedure.  Yeah!!!! We aren't interested in any overnight stays!

For now, we are just looking forward to a peaceful Thanksgiving holiday with family!  Happy Thanksgiving!  Enjoy the pie!

Monday, November 21, 2011


We have so much to be Thankful for this year.  We will celebrate Thanksgiving this year with family, and we are so grateful to everyone in our family; near and far.  Every year, we write down what we are thankful for in a Thanksgiving journal that I started a few years ago.  I was looking at the previous years, and I was indeed thankful for my family, but never as much as I am this year.

If you have kept up with this blog this year, you probably already know exactly what I am thankful for. We usually only write down about 3 things each.  I could have filled the whole book this year!  I chose to not list absolutely everything.  I know that God knows my full list.  I've been discussing it with him throughout the year.

I pray that each and every one of you have a wonderful Thanksgiving holiday this year.  Please remember to pray for the kids that don't get to be home this year, and also for their families.

Happy Thanksgiving!

Tuesday, November 15, 2011

Super Piper is NED!!!!!!

Today, Piper had a CT, an echo cardiogram, and an appointment with her oncologist.  Since Piper does not have her port anymore, she had to have an IV placed.  She was not happy....  It took two times for the nurse to get it right.  I wasn't very happy, either.  They finally got it right, though. 

Enter the ketamine.  Ketamine is the drug they always use to sedate Piper.  It works great, and it is quick!  It lasts just long enough for them to get the CT images.  She started coming out of it before we even got her off of the CT table.  She handled it well, though.  Daddy was there to hold her so she was happy!

As soon as the CT was over, they were ready to do her echo.  That went amazingly well!  She usually does not let people put leads on her, and she also doesn't typically cooperate with the ultrasound process.  I guess she was still a little relaxed from the ketamine!

After several hours, we were finally finished.  There is one thing you can always be certain of at Duke.  A procedure that only takes a few minutes will take at least an hour.  AKA : Duke Time.  We were finally allowed to leave the radiology dept.  We headed up to the 4th floor to the oncology clinic.  They drew labs, and we talked to a few nurses and doctors.  They still didn't have the "official" results from her scans yet, so they told us they would call later today.

Piper's oncologist called this afternoon to tell us that her scans were all great!  There is actually hardly any trace of her kidney remaining.  This is actually good news.  Her kidney has basically shriveled up, and is disappearing!  The reason that this is good news......  if the "good" cells aren't growing, then the "bad" cells aren't growing.  As long as the kidney is basically gone, the cancer cells can't grow back! 

So, today we thank God for Piper's failed and disappearing kidney.  I never thought I would be writing something like that.  Only God could know that kidney failure could be the best thing for our little girl.  We have faith in God's love for Piper, and we know that He will continue to do what is best for her.

She did an amazing job today, in spite of everything she had to deal with.  We are so proud of her!!!

Saturday, November 12, 2011

Our Little Shining Star

I haven't posted anything since we were preparing for Piper's last surgery.  I guess I've been busy trying to make everything "normal" again.  She successfully had her port and her hemo-dialysis catheter removed.  Since that day, she has been improving so much!  Her energy is great now.  She plays and climbs on everything.  She has even started eating "a little" better.  She is getting enough food to keep her going, so we're happy with that. 

We even felt comfortable enough to take a short vacation.  On Halloween weekend, we took the girls to Walt Disney World.  They both had an amazing time.  Piper stayed wide awake for most of the day.  The only cat nap was taken during "The Hall of Presidents."  Big sister also chose to take a cat nap during that presentation.  While we were in Florida, Piper decided she wanted to start walking.  She has been walking more and more every day!!!  We are so excited about this.  Her hair is also growing in quickly.  Hopefully, she will be able to wear some hair bows for Christmas!

We had to take the peritoneal dialysis machine, tubing and supplies with us to Florida.  We aren't allowed to take a night off, so we still had to do dialysis at the hotel.  We had to put the machine on a dining chair, the fluid laid to the side on top of a box, and the drain bag sat on the floor.  We had to cut a hole in the mesh siding of the pack 'n play so things would flow easier.  Surprisingly, it worked great!  Praise the Lord!  ... considering how we had things set up, it was nothing short of God's hand that made it all work so well.

Piper is scheduled to have her 3 month OT (off treatment) scans on Tuesday.  She will also meet with her oncology team so they can check her progress.  On Wednesday, she will have her monthly nephrology (kidney doctor) appointment.  These typically last a while because we have to see a lot of people.  Piper handles this well, though.  The following week, she is scheduled to see her ophthalmologist.  We were told that they will be fitting her for glasses at this visit.  They keep saying that, though, so we'll see.

We are getting excited for the holidays.  Piper and Emma put their letters to Santa in the giant red mailbox at Macy's last night.  Piper asked Santa for a new kidney, but she'll settle for some hair bows and toys!  Hopefully she will get her kidney next summer!  We have been told she has to be cancer free for one year, but no one will tell me when that "year" began or will end.....  I was told that they should have better answers for me in January. 

Please pray that Piper's appointments go well this month.  She has been doing so well, and we pray that she keeps improving every day!  Please pray for clear scans, great lab results and a fantastic eye appointment!  Please also continue to pray for the other kids at Duke.  Several of Piper's "friends" are still fighting.  We pray that God will perform miracles on the 5th floor this Christmas!