theSTORY

the STORY

When my husband Jeremy and I had our son, Trevor, on July 23, 1993, we thought that life couldn't get any better. Trevor was a perfect angel. When he was about four months old, Jeremy and I decided that we'd like to have another baby, seeing how it was so "easy". Trevor rarely got sick. He slept through the night at six weeks old and let anyone who cared to hold him, do so. I spent my second pregnancy playing with my then-toddler Trevor and dreaming of having another perfect baby, which I instinctively knew would be a girl.
Around the time I was entering my seventh month of pregnancy, I had an ultrasound. The technician asked me if my son had been born with a lot of hair and I laughed and said no, that everyone in both of our families was born bald and stayed that way for almost two years. She replied that this baby was going to break that tradition, something I thought was odd but not worrisome.
When Cassidy Rae was born, weighing nine pounds and measuring 20 1/2 inches long, sure enough, she had a crop of dark hair. But the hair was only on the top of her head, and when I first saw her all covered in fluids and her hair matted down, it looked like a beanie cap on the top of her head. I still wasn't feeling anything but absolute joy to have my daughter and to not be pregnant anymore! As I was recuperating in the recovery room, a doctor came in. "Don't worry," he said, "we'll schedule an appointment with a dermatologist and a specialist, but she seems like she'll be fine." WHAT? He then explained to me that the reason Cassidy had so much hair was because she had a large hairy nevus on her head. I soon found out that a nevus is a type of birthmark, Cassidy's was of the type that had hair growing out of it, so cosmetically she couldn't have gotten it in a better place than where hair naturally grows. However, I still only knew what I read in my "What to Expect" books and in medical dictionaries.

When I took Cassidy to her pediatrician a week later, I was told that there was a one in ten chance of the nevus developing cancerous spots within it. The nurses, as well as the doctor, all looked and acted nervous around me. I was devastated. They may as well have told me that my baby was going to die. My pediatrician made an appointment for us with the head of the dermatology department for about two weeks later. In the meantime, I cried all the time. Cassidy cried all the time. I got to saying that she was "colicky" but now I think that she felt my fear, my horror, my absolute grief. I couldn't sleep, I couldn't play with Trevor. All I could do was cry and imagine how we'd deal with it when Cassidy died. But the worst part was I couldn't say this aloud, or I knew it would come true. Jeremy was also devastated, but he refused to believe anything other than that she'd be "fine." He'd hardly even discuss it with me, just telling me that everything would be fine. I wanted to believe him, but between the post-partum hormones raging through my body, and the fact that I wasn't sleeping, I pretty much just wallowed in my own self-pity.

Then we met Dr. Kates. He was the most wonderful doctor with the best personality I've ever, to this day, had the pleasure of meeting. Dr. Kates told us that the chance of Cassidy's nevus developing cancerous spots within it was more like one in one hundred than one in ten. He also told us that because of that chance, if the nevus was on any other part of her body, they would simply remove it. But because it was on her head, and because it was so large, we decided to monitor it very closely. There is also the risk that Cassidy could develop neurocutaneous melanosis (NCM), a heart-breaking diagnosis of nevus cells growing on the brain and/or spinal cord. There is currently no treatment or cure for NCM, which causes seizures and other problems. An MRI is currently the only method of detecting these nevus cells on the brain or spine, which we opted not to do. Unless Cassidy gets sick or begins having seizures, I want her to live her life without fear of something that we can do absolutely nothing about.

Dr. Kates treated Cassidy like his own daughter and every time he told us our options, he would say "If she was my daughter, this is what I would do, but she's your daughter and I respect your decisions if you decide to do something else."    He convinced me to stop looking up Cassidy's condition in medical journals, which only give worst-case scenarios and were only terrifying me,   He told us to run our fingers over her scalp every day to check for bumps, or growths, and that if we found anything, to notify him immediately. When we left his office that day, I finally felt an enormous weight being lifted off of me. My heart began to beat again.
   Six months later, we noticed a "bump." We took Cassidy back to Dr. Kates, who performed a biopsy. He promised us that although our appointment to get the results wasn't for another week, that he'd call us immediately if anything was wrong. As the days crept by, and no phone call came, we again felt slightly relieved. Yet part of us was still paranoid, wondering how many times we were going to have to go through this. When we arrived at Dr.Kates' office, he greeted us with a smile. "No news is good news" he said, explaining that Cassidy's biopsy came back negative for cancerous cells. We continued to bring Cassidy to see Dr. Kates every three months. When she was 18 months old, we went for our regular visit. Dr. Kates checked out Cassidy's head and informed me that he could barely even see the nevus anymore. He said that he'd never heard of one disappearing, but that hers definitely faded and that it looked great. He gave us a year off for "good behavior" and said that checking her head thoroughly once a month would be sufficient - but that we are still to call him immediately if we ever notice any change.

     Looking back, I'm astonished at how much we've both grown, Cassidy and I! She began talking at six months old and walking at eight months old. She is adventurous and strong-willed, she has a charming personality and a wonderful sense of humor, she is constantly making us laugh. I still can't imagine my life without her. The difference is that now I don't even think about that possibility.   Most days, I don't even think about the fact that she will always have that risk, that horrible one in one hundred chance. Instead, I dream about her first boyfriend, her prom, going to college, having children of her own - the same things I dream about Trevor doing.   More than anything, I am so grateful for Cassidy's continued health. It's something that we never take for granted. Every year on her birthday my husband and I reflect on the day of her birth, and how very afraid we were of losing her. Every birthday is like "HA! We did it again!"