Exhale. Its done. Nearly two years after first asking for a biopsy it’s finally complete. Just knowing we will soon have a difinitive diagnoses brings a sense of calm.
We battled to have this done through specialty care and in the end I am ever so thankful that our primary doctor stepped up to the plate. There seemed to be a sense of hesitancy to complete the biopsy on a little one until our family doctor joined the cause. I truly believe that without the compassion and knowledge of our support group, family and Mommy’s Mermaid followers, we would still be fighting. The genuine compassion they showed us gave us opportunities to not only share what they had completed but allowed us to pick the brains of specialists across the country. We were armed with the right information to close the deal. To each of you that have spent your evenings chatting with me and sent me pertinent information, I thank you.
So why does this mean so much to my family? Nevus comes in many forms. The treatment and complications for your specific subtype varies. Some have more opportunities for less invasive treatment and others simply result in surgery. I feel very strongly that it is our right, if the technology exists, to know the true pathology of Mermaid’s nevus. We deserve as a family to prepare and educate ourselves on whats to potentially come in the future. Could our original diagnosis of Linear Epidermal Nevus remain, sure, but it also may not.
I worked daily for a week or so to prepare Mermaid for this day. We talked about the first shot, where it was going to be and that we would then be cutting out one of her special Mermaid scales so the Dr. could make her feel better someday. Sounds silly to have an expectation that a 2-year-old would comprehend what I was saying, but I must say, it worked!
From the minute we walked into the office she was mentally prepared. Yes, there were tears with the inital injection of lidocaine but heck, when I worked in Internal medicine I saw tears from adults too! She got away once but we readjusted and from there on out it was smooth sailing. Daddy, myself and our beloved assistant kept her still and calm and it went much quicker than anticipated. She got one small stitch which I will remove myself in a week or so and by the time she had a hello kitty & my little pony sticker in hand, she had forgotten what happened. It didnt hurt that brother was there shortly after to offer another level of sunshine. I am so proud of the strength and understanding my Mermaid showed today. She really is something special.
I cannot express what a gratifying feeling it is to have a Dr. That not only supported us doing this, supports us participating in the Yale trial, but supports all our efforts to find answers and comfort for our Mermaid. After all, he may have one of only a few children in our state with this rare disease on his case load!
In roughly 2 weeks we will know the exact pathology of Mermaids nevus and whether or not it contains cancerous cells. One more victory in our journey!
Thanks for walking with us today,