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A Mother’s Perspective - Pediatric Kidney Disease

My daughter has cancer.

I never thought words like that would ever enter my mind, but when Hannah was about 13 months old something wasn’t right. One side of her stomach was bulging. A visit to the pediatrician resulted in a trip to the hospital – Do not pass go and do not return to your previously normal life.

At the hospital, we discovered that Hannah had a cancer of the kidneys called Wilms Tumor. She was one in about 500 children diagnosed with this type of cancer each year in the U.S.  

I was heartbroken to find out that my 13-month-old daughter had cancer. Hannah would lose one of her kidneys and an ovary, plus she’d have seven months of chemotherapy. No parent ever thinks one will receive news like that.

Just over a year after the cancer diagnosis, Hannah was diagnosed with a kidney disease called FSGS. We were told that she would need a kidney transplant in two years, but amazingly her kidney lasted until she was 11. 

Hannah's remaining kidney started to fail around April 2011, and it was extremely scary. She was hospitalized most of that summer and had multiple surgeries, including one to remove her remaining kidney. There was about two months when she did not have a kidney. 

  hannah_and_mom.jpg  

 Hannah (left) with her mother, Kelly.

As if the kidney failing was not scary enough, Hannah suffered from seizures due to extremely high blood pressure from the failing kidney. The blood vessels in her brain swelled, and for almost a week, she could not see or speak. During those days, I could not imagine that Hannah would ever return to the child she had been. 

Hannah had a kidney transplant on September 29, 2011. Once things improved, she was able to do peritoneal dialysis at home until transplant. This allowed for her life to get somewhat back to normal. I would hook Hannah up early at night, and then I would unhook her in time to go to school. 

We have always had to travel about an hour-and-a-half to Hannah’s specialists. Her nephrologist is at University of Virginia Children’s Hospital, and he is the greatest! I am blessed and grateful to have a wonderful job with great health insurance.

Without insurance, there is no way our family would have been able to provide the treatment to Hannah that she needed without constant worry. Even so, our medical expenses are high.

Hannah is doing great now! She is a junior in high school, not far from college and a career. A transplant is a treatment – not a cure. It is important to remember that Hannah will always be on medicines to keep her body from rejecting the new kidney, and there is always the looming fear that the kidney she has now will fail. 

Yet it is obviously better than the alternative, and we can adjust life to accommodate.

March is National Kidney Month. Hannah's mother, Kelly, is an advocate for the National Kidney Foundation.


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