Our Stories

Cassidy’s Story

When Cassidy was four years old we had never heard of Focal Segmental Glomulersclerosis.  Now, it is a part of our vocabulary.  It rolls off our tongues as if it is just another word.  We know it is more than just a set of words.  In 2002 we were struck by this disease like a lightening bolt in our household.  It would set off a battle that we fight to this day.

That summer, we had just moved into a different house.  We had been under intense financial strain.  But the events that happened that year and every year since are seared in my memory. 

My husband and I had gone out for an evening and when we returned home, the babysitter told me Cassidy had hit her head.  We checked on her, she had a bump on her head.  She appeared ok other than that.  The next day I noticed her eyelids were slightly puffy (a symptom I would learn to look for almost daily in her even to this day!)  I called the doctor and they told me it was probably some allergies and to give her Benadryl.  It seemed to work because by the end of the day it was gone and I didn't really think about it again.  I didn't think about it again, that is, until I began to notice that it was a daily occurrence.   

We made an appointment to take her in.  They did a routine check up and found nothing. We played this game for a couple weeks until finally one night when I was sitting on the floor folding laundry, my little Cassidy came and stood in front of me and when I looked up I realized I could not even see her knee caps her legs were so swollen!  I worked at a school that year and it was the end of the school year and I knew I could not take off from work.  So I told my husband "you have to take her in and you do not leave until they give you an answer!"

By now, I knew something was wrong. I was fairly sure there was something wrong with her kidneys but I didn't know what.  We were scared.  The next day I went on a field trip with the students.  My husband called me during the field trip and told me that the doctor had diagnosed her immediately with Nephrotic Syndrome and they would be taking her by ambulance to Children’s Hospital in Omaha.

I left the field trip and drove as fast as I could to where she was and by the time I got to the hospital they had decided to keep her closer to home, but still in the hospital to get the fluid off of her.

We spent the whole summer on 60 mgs of steroids and our pediatrician kept trying to get us into the nephrologist in Omaha.  For 12 weeks we watched our little girl swell up like a balloon due to the steroids. She couldn't move, she had constant mood swings, she would scream that she hated me.  It was exhausting.

At one point she became sick with a cold and her nose started bleeding and she started throwing up blood.  We called the doctor and he told us to bring her in immediately.  We looked like we had been in a gang fight the blood was all over!

Finally they got us into the nephrologist 12 weeks after the onset.  They scheduled a biopsy and that is when we were handed the title of FSGS.  We learned that she would have this forever, that it could go into remission, but that it will always be there and it can rear its ugly head whenever it wants.  We learned that they really didn't know what to expect in the future. 

They didn't know if it had shortened her life span or if she would be able to have children some day.  What we did know was that we were now looking at a daily regimen of steroids, Cyclosporine, and Enalapril and for how long we didn't know.

The steroids took a toll on her. Her immune system was jeopardized.  We sent her to pre-school that year, fearful of what was to happen.  She was bloated from the steroids so we were concerned about what the other kids would say. We were worried about her physically exerting herself during play. We were just racked with worry.

We made a decision that day to take it one day at a time.  Now, almost 10 years later she is the ornery little girl I knew she would be.  She is in remission and only has to take Enalapril now.  I feel like I am always waiting for the shoe to drop and one day she will wake up and I will see those swollen eye lids again. 

The doctor is optimistic that she may not relapse since she was so young when we got it.  They were surprised at the reaction to the Cyclosporine.  We go in once a year for a check up now.  I always have it in the back of my mind.  Things I am fully aware of are that she has access to water all the time, that she be able to have bathroom breaks at school when she needs them and that she rest when she needs it.  This summer she wanted to detassle but I was worried about the heat so I told her we would call the nurse at the nephrologist, who has become as much a part of our family as anyone!  She discouraged against it due to the fact that they have had a lot of kids relapse in detassling due to inhaling the pollen and dust.  

She also said that the heat and sunburns are also hazardous.  I know we are going to continue to run into things that could trigger a relapse.  I also know it is something she will always have to be aware of.  I am just thankful that we have such a good set of doctors and nurses to patiently answer any questions we may have.

We are also thankful that our little girl, who we have had to fight MANY battles for over the last nine years, is such a strong vibrant young woman.  I don't know what life would have been like without FSGS. I imagine it would have been just that less stressful but in ways it has really pushed us to stand as a family.

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