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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Piper's Story - The Quick Version

[Last Updated March 12, 2013.]

Our daughter, Piper, was born March 2, 2010.  When she was 6 days old, she was diagnosed with sporadic aniridia.  We were immediately referred to the Duke Eye Center for Piper to be followed by an ophthalmologist.  Aniridia is a chromosomal abnormality.  The most visible sign is that she has no visible iris.  She also has cataracts, and she is near sighted.  She wears the cutest glasses, and she will require surgery to remove her cataract(s) in the future. 

About 1/3 of children with sporadic aniridia will also have a gene deletion that will cause them to develop Wilms Tumor.  Piper received ultrasounds every 3 months, since birth, to monitor her abdomen for tumors.  On her first birthday, we received the call that they found tumors on both of her kidneys.  She was diagnosed with Bilateral Wilms Tumor.  She was admitted the next day to Duke Children's Hospital to begin treatments.  After 12 straight weeks of chemo (and several hospital stays in between), Piper had her "big surgery".  She had her whole right kidney, 20% of her left kidney, and the remaining tumors removed.  Unfortunately, after surgery, the remaining portion of her left kidney never worked again. 

She was diagnosed with kidney failure.  She started dialysis within a few days.  She remained in the hospital for 38 days.  She finally finished all chemotherapy treatments in August 2011, and she was declared "Cancer Free".  (Those are awesome words!!!)

In September 2011, we started doing peritoneal dialysis every night at home.  Piper will continue to receive these treatments until she receives a new kidney.  The doctors and surgeons initially told us that Piper would have to be cancer free for one year before they would transplant.  One year has come and gone, and we're still waiting.

She is currently doing well.  She remains on a lot of medication, and we have regular checkups to monitor her progress.  She also has scans every few months to make sure that cancer has not returned.

Piper turned 3 years old on March 2, 2013.  She loves to climb on anything in sight!  She enjoys music, singing, dancing, and being outside.  She's even starting to learn her numbers, letters and shapes!

She will continue to be monitored by 1) The team at Duke Eye Center, 2) the oncology team at Duke CHC, and 3) the pediatric nephrology team at Duke.  We are blessed to have so many wonderful doctors and nurses taking care of Piper's needs.