Hello everyone!
For those of you that know me well, you may be surprised that I am starting a blog. Believe me, I never thought I would be doing this either. I have decided to do this for a few reasons. First, I hope to provide the same support and comfort to other nevus families that I have received along the way. Second, it is a wonderful way to increase the awareness of CMN. Lastly, I know there are a lot of people who care about Aiden and are interested in hearing about his progress.
For those of you that don't know a lot about my son, let me fill you in. Aiden was born on November 1, 2010 with Congenital Melanocytic Nevus (CMN). Let me break down what that means: Congenital simply means "present at birth", Melanocytic means "pigmented" and Nevus means "birthmark/mole". These birthmarks can range in many different sizes and locations on the body. His is located on the left side of his chest (about half way), around to a small portion of his back and most of his shoulder. Based on the size that his nevus would be as an adult, Aiden's nevus has been labeled giant, which occurs in 1 out of 500,000 births. He was also born with about 42 smaller nevi, also known as satellites, throughout his entire body. Unfortunately, the satellites can continue to multiply throughout his life. Today he has about doubled (I stopped counting) the amount he had at birth.
We had no idea any of this was going to happen so we were quite surprised when he greeted us for the very first time. It didn't help that the hospital had never seen it before. All they had to tell us was research off the internet and there was nothing good that came from that. They couldn't tell us too much about the condition except that he would be at a higher risk of melanoma in his life. They also scheduled him to have an MRI the next day to make sure that there weren't any pigment cells on the brain or spinal cord (this causes neurocutaneous melanocytosis...aka NCM). I learned at that moment just how unexpected life could be.
We went home from the hospital with several appointments with doctors who had hopefully seen this condition before. We also went home under the impression that Aiden had NCM on his brain so we were terrified for his future. It wasn't until months later that we learned that was incorrect. We also learned that the best way to lessen the risk of cancer was to remove it through plastic surgery. That was so scary to think about while we looked at his precious face everyday but we also knew that we would do whatever was best for him. We had seven appointments within the first month of his life so it was difficult to try to adapt to a normal lifestyle. It was a roller coaster of emotions that never seemed to end.
We were worried about the cells being cancerous so Aiden has biopsies taken of his giant nevus at his first dermatology appointment. This was a nightmare because they went to three different labs who all said they couldn't determine anything. So we went in for more biopsies. They still came back atypical but the lab determined that they weren't cancerous at this time. It was a great day because it meant that he wouldn't have to go through surgery before six months old.
It wasn't until March, when I met some other nevus families, that I finally began to feel better about Aiden's skin condition. I learned more about his condition than any doctor had ever told me. They even told me about Dr. Bruce Bauer, a pediatric plastic surgeon, who is a expert in nevus removal. The only issue was that he was located in Chicago but I knew that I wasn't going to settle for anything less than his experience. Going to Arizona to meet these families was probably one of my best decisions in my life so I am eternally grateful for them. Dr. Bauer is one of the best doctors I have ever met and his work is unbelievable.
Fast forward to today and I am in a much better place. It's still scary and I am not looking forward to putting him through surgery but I know its the best for Aiden. I have a great support system and I am so blessed to have him in my life. He is the happiest baby and I couldn't ask for anyone better! He lights up my whole world each and every day.
I am eager to start the surgery process in August but I am also looking forward to enjoying the next few weeks before it all starts. Thank you for supporting us and stay tuned for more updates.
Here are some pictures of Aiden's nevus:
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| This one was taken a few days after birth. |
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| This one is more recent. Much lighter than it was at first |
Feel free to visit www.nevus.org for more information on CMN.
