This is Cassidy's Story

FSGS has been a major learning experience for our family. In 2002, when our daughter Cassidy was diagnosed at the age of four, FSGS profoundly changed the way we live our lives. My husband and I never, of course, expected to deal with a chronically ill child. We were already having a rough year, reeling from the loss of our home due to a tough financial situation.

We thought things could not get any worse — until the night when we came home from an evening out and our babysitter said my daughter had hit her head and started throwing up. To many, this may seem irrelevant, but I just remember the order in which this all happened so clearly. We took her to the emergency room worried about a possible concussion. The doctor sent her home a couple hours later with the instructions to “keep an eye on her.” Since that night, we have never stopped “keeping an eye” on her.

The next morning, while helped a friend move, I noticed that Cassidy’s eyes were slightly puffy. When we called the doctor, the nurse told us it might be allergies and to try Benadryl with her. The puffiness seemed to go away on its own. A couple weeks later, things took a drastic turn for the worse.

Cassidy was sick one weekend with a high temp and tiredness. We spent the weekend snuggling and drinking lots of fluids. Her one eye seemed to be extremely puffy. Finally, we decided to call the doctor again. He was concerned that it might be an eye infection. While I was on the phone with him, Cassidy started throwing up. My husband rushed her to the bathroom so I could not see what was happening. He came out and said we had to leave immediately. My husband is a calm person so when he is upset about something, I know it is bad. On our way to the emergency room, Cassidy threw up again and this time it was all blood. I was scared. By the time we got to the emergency room she looked awful. The bleeding would not stop. The doctor thought that the reason she threw up blood was because her nose had been bleeding and went into her throat.

Again we were sent home with the instructions to “keep an eye on her.” Finally about a week later, I was folding laundry when Cassidy came and stood before me. I noticed that she was so swollen you couldn’t see her kneecaps or ankle bones. I told my husband to take her back to our pediatrician and not leave until she was diagnosed with something. I was on a field trip with my class, two hours away, when my husband called and said I had to get home right away. Cassidy would be admitted into Children’s Hospital in Omaha. During that seemingly endless drive back to her, I called my husband repeatedly to find out more. All he could tell me was that she had something wrong with her kidneys and she was spilling protein.

By the time I reached them, our pediatrician had called a nephrologist in Omaha. They decided not to hospitalize her, but to start her on a heavy dose of steroids. This is when we learned about Childhood Nephrotic Syndrome. We called every place we could think of for help or information, without success. Even the American Kidney Foundation had very little information. To make matters worse, we had no insurance at the time.

During the summer, Cassidy suffered many of the side effects of steroids. She started retaining fluid and required diuretics, even hospitalization. She began the summer at 37 pounds and by the end of summer she weighed 54 pounds. We were fortunate to have a wonderful pediatrician who walked us through every step of the condition. We always had hope that she would pull out of this as she got older.

In September of that same year, the Nephrologist decided that the steroids had not done what they had hoped so they wanted Cassidy to have a kidney biopsy. It was then that we learned about Focal Segmental Glomerulosclerosis (FSGS). Since then, we have had Cassidy on steroids, Cyclosporine, and Enalapril for her blood pressure. We try to control her salt. We have had several bumps in the road but Cassidy has turned out to be a real trooper. When her class had a weird outbreak of chicken pox, Cassidy bravely underwent the Varicella Zoster shot three times to boost her immune system. She takes her medicine twice a day like clockwork. She has slowly developed the ability to swallow Cyclosporine pills.

We had Cassidy in remission from this terrible disease last summer. However, recently she has started spilling protein again and is back on steroids. When they told us we would have to start steroids again, I started crying. My husband asked why I was crying and Cassidy said to him “Mommy doesn’t like it when I am on steroids.” She is such a smart little girl and this disease has taught us lesson after lesson. We know that we have a long road ahead of us. We take each day as it comes and we hurdle each new obstacle together.

We have been to hospitals because of the flu, dehydration and fluid retention. We have suffered the effects of steroids. We have shed the tears and felt the heartache. Mostly what we feel is grateful…grateful for a little girl who endures so much and deals with it so well. Cassidy leads a normal life, playing with friends and going to school. We don’t know what the future will bring, but we know we are ready for whatever hand we are dealt.