Cassidy's Story

Cassidy was born on May 17, 2004 at 2:45pm. She weighed exactly 6 pounds and she was the most amazing miracle. We loved her instantly. She seemed perfectly normal and healthy and there was nothing in her tiny face to tell us anything was wrong with our daughter. The first tiny clue came after she was breastfed for the first time, she spit up. Lots of children spit up, but Cassie seemed to do it almost constantly. Milk dribbled from her little chin more times than not and we kept a bib on her constantly. As new parents we never suspected this might not be perfectly normal.

A few weeks after Cassidy came home, she got sick for the first time. Her aunt came to visit with a slight cold and by the next morning, Cassie was sick as well. That was the first of many, many illnesses. For the rest of the summer Cassie visited the doctor rather frequently. She got colds, she spit up. We began to suspect a milk allergy and I eliminated all milk and soy from my diet in case even a tiny trace was being passed to her through my breastmilk. My elimination diet seemed to work and while Cassidy still spit up, it was far less frequent and in smaller quantities.

When she was three months old, Cassidy went into daycare. A week after beginning at the daycare center she was sick again. One cold after another, stomach bugs, pink eye and every conceivable illness plagued her throughout the fall and winter. Sometimes it felt like she was well for only a couple days before the next issue presented itself.

One day, when she was nine months old, I asked her pediatrician in frustration if she had any immune system at all. The doctor merely shrugged off my concerns and said we'd begin testing her for stuff at a year if she was still having issues. The pediatrician reminded me that daycares are breeding grounds for illness and it wasn't uncommon for children to get sick.

At ten months, Cassie got sick again. This time however, she got really, really sick. She caught bronchitis and her tiny chest contracted with each breath she was working so hard for air. Her pediatrician listened to her lungs and heard wheezing. We were sent to see a pulmonologist. It was just routine, I was assured, nothing to worry about. All children who have any sort of wheezing are referred to a pulmonologist and it usually amounts to nothing. Likely just a side-effect from the bronchitis.

The pulmonologist was a rather rude shock. He informed me my daughter had asthma and we'd have to radically change our lives to safe guard her. Eliminate all dust, carry inhalers, clean frequently and possibly get rid of our pets. I was flabbergasted. Amid all his talk of reactive airway disease and bronchodialters he scheduled us for a sweat test to check for cystic fibrosis. I was told not to worry, the chances of Cassidy having CF were remote. Again, it was just routine. They tested all children who wheezed for CF.

On the drive home that day, I cried. Not because of the supposed asthma, but because my daughter was being tested for CF. I knew, vaguely, what the disease was and the idea terrified me. I think some tiny part of me knew already. Cassie had her sweat test soon after. She failed miserably.

With a single phone call from a nurse, delivering the sweat test results, our entire world was shattered. Our normal, sane, average life was crumbling away as I discovered my daughter had a terminal illness. Cassidy's father and I cried for a very, very long time, hugging our daughter tight and trying to understand the incomprehensible.

Cassidy's pulmonologist assured me that CF is not a death sentence. He told me that a cure is just around the corner and we just need to buy her time. He told me that children with CF normally do not get really sick until they are older, school age. Within two months of her diagnosis, Cassidy was hospitalized. She had caught a dangerous CF bug, Psuedomonas that can destroy lung tissue and cause long-term damage. That was her first hospitalization and our first real brush with the fact that life really was never going to be normal again.

Cassidy started a course of IV antibiotics to treat the Psuedomonas. However, her tiny body couldn't handle the powerful drugs she was being given and it reacted by causing her to have severe reflux episodes more than 30 times a day. Every sip of water, every bite of food was agony for Cassidy and she soon stopped eating and drinking altogether. Her weight had never been great, barely pushing the 25th percentile. Now, however, she fell off the charts altogether and we were warned that her health was in a dangerous downward spiral.

Cassie had struggled with eating and drinking before the IV antibiotics. By the time she started them, she'd already been to the ER twice because of dehydration from drinking so little. Within a week of starting the IVs she was back in the hospital again - this time for major surgery. The only way to save Cassie, to make sure that she got the nutrition she needed to live, was to give her a g-tube, a tiny tube into her stomach that could deliver formula over an extended period of time. She also underwent surgery to correct the severe reflux, something called a Nissen Fundoplication.

We were sent home with a feeding pump, a case of formula and a child that could no longer burp or throw up. No one had warned us about the potential side-effects from the Nissen and we found out about those the hard way. Cassidy could no longer burp but air still got into her tummy and built up uncomfortably there. Rather than burping Cassie began to have a series of gagging attacks, struggling and gasping to force air out of her stomach. They were like the worst dry heaves you can imagine. Sometimes she had six or seven attacks in a single day and it left both of us crying, Cassie limp and red-faced in my arms. The only way to relieve her attacks was to vent her tummy using a special open topped syringe so the air could escape. One day she had an attack so severe that blood poured from her nose and mouth.

Slowly, over time, the attacks began to go away. We got better at dealing with them. I ordered a new feeding pump for Cassidy that she could wear in a special backpack throughout the day. The new, slower feedings helped. Time also loosened the Nissen surgery enough so that Cassidy could throw up small amounts and that helped as well.

When she was three, out of the blue, Cassidy developed sinus issues. Her sinuses became so impacted with mucus that she had to have sinus surgery. At the same time we discovered she'd been growing Aspergillus mold in her lungs, probably for months. By the time it was caught one of her lungs was filled with mold spores, so many that it was literally off the charts. The other lung was only slightly better. Once more, Cassidy was placed on IV antibiotics and once more she underwent surgery. In addition to the IVs Cassidy began a very strong anti-fungal medication that was supposed to knock out the Aspergillus. For four months we fought tooth and nail to eliminate the mold in her lungs. Finally, after many meds, three bronchoscopy's and a lot of superhuman effort we managed to beat back the mold and to get her sinus issues under control.

Every day Cassidy takes twelve medications and does two hours worth of breathing treatments just to stay healthy. That is on a good day. When she's sick she can do four or more hours of treatments and has been on as many as 16 medications at one time. Every day we fight to keep her healthy and every day we thank god for her. Cassidy is our little miracle baby, and though her life has been a fight, it is one worth fighting for. I love my daughter and I am so proud of the funny, sunny little person. She has a fierce bright spirit and she will not give up. Neither will we. One day, we'll beat CF. One day, Cassidy will be free from this disease. One day she will have a cure.