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, December 30, 2011

Piper Pics

Piper had the typical one year old encounter with Santa!

(left to right) Piper, Mommy, Emma - look at all of that hair! (on Piper)  ;-)


2011 has been the most eventful year of my life, and probably anyone in our family's life as well!  We have seen the good, the bad, and the ugly....  but we praise God through it all!

January was mostly quiet. 
February : we celebrated some birthdays, and we signed a contract to buy a new home!
March : we celebrated Piper's first birthday! (3.2.11), Piper was diagnosed with cancer (3.2.11), we closed on our new home and moved (3.11.11), we discovered how cancer changes everyone's lives.
April : we spent some more time in the hospital dealing with cancer issues.
May : we spent some more time in the hospital dealing with cancer issues, and we celebrated another birthday!
June : we spent a LOT of time in the hospital (6.8.11 - 7.16.11), Piper had her BIG surgery (right kidney, 20% of left kidney, and all tumors removed!), Piper was diagnosed with kidney failure and started dialysis
July : we spent a LOT more time in the hospital, Piper continued on dialysis and chemotherapy
August : Piper was declared Cancer Free!, she ended chemotherapy treatments, she continued dialysis
September : We started doing peritoneal dialysis at home every night.  We celebrated big sister's 3rd birthday!
October :  We continued peritoneal dialysis, We went to Disney World!
November :  We continued peritoneal dialysis.  We celebrated Thanksgiving!
December :  We continued peritoneal dialysis.  We had an ugly car accident that totaled our van.  (We're all okay for the most part).  The mail lady ran down (totaled) our mailbox post.  We bought a new van!  We celebrated Christ's birth!  We prepare to celebrate the end of this year!

That's our year in a nutshell ....  I think we covered most of life's most major stressors.
1.  Purchasing a new home and moving.
2.  Having an immediate family member diagnosed with a life threatening illness.
3.  Having an immediate family member diagnosed with a second life threatening illness.
4.  Vacation.
5.  Car Accident.
6.  Purchasing a new car.
....  and then our mailbox was run down!  ;-)

This year has opened our eyes to so many new reasons to pray and praise God!

So, here's the revised version :
January :  Enjoyed a peaceful start to a year of discovery!
February : Celebrated life, and found our new home!
March : Endured great struggles as a family so that we could grow together and in Christ!
April : Met new friends that needed us to pray for them!
May : Celebrated life, and prepared for Piper's life saving procedure!
June : Learned to praise God every single day for every single breath!
July : Praised God for being "home" together as a family!
August : Praised God for ridding Piper's body of cancer!
September :  Started a process that would allow Piper to be at home every day!
October : Enjoyed a magical vacation!
November : Celebrated Thanksgiving with family!
December :  Celebrated Christ's birth with family!

Wishing you all a safe and Happy New Year!  May God bring us peace!

December Update

We recently had Piper's appointment at Duke to confirm if there was a hole in her PD (peritoneal dialysis) tubing or not.  The scans showed no leaks!!!  This is good news.  We still can't explain the bulge in her tummy, but the doctors aren't worried.  They just said to let them know if anything changed.  Her December nephrology appointment went well.  Her labs came back with good results.  We were told that we will start the transplant discussions in January.  There is still debate over when the "1 year cancer free" date is....  the nephrology team says June 8, but the oncology team says mid August.  For now, we go about our days, enjoying every moment we have with each other!  We praise God that we are all here to celebrate the holidays together and at home!

Thursday, December 8, 2011

Piper's Visit with Dr. Rice

Piper had an appointment with Dr. Rice (her surgeon) yesterday.  Her nephrologist thought she had a small leak in her peritoneal dialysis catheter, but Dr. Rice couldn't tell from just looking at it yesterday, so they will look at it further when we go back in a few weeks.  They want to put a dye in her catheter and view it at Radiology.  So, we wait, and we pray that it doesn't get any worse.  It doesn't appear to be affecting the dialysis process, so I think it will be okay.