We went to the pediatric dermatologist in Birmingham this week, and she confirmed our suspicions. Anna already has five basal cell carcinomas (BCCs) on her tummy and back - skin cancer. Already?! I mean, I knew this was part of Gorlin Syndrome (which is also called Basal Cell Carcinoma Nevus Syndrome), but I just didn't expect these little suckers so quickly. But, the doctor said they're okay as long as they're not showing signs of growing or bleeding. So, she prescribed a cream to put on these and any others that pop-up, and then we'll have them removed when she's a little older.
Okay, I was going to crop this picture above, but how cute is this belly! Ha! You can see the little red spot right there, that's a BCC. There are three more on her back and another on the other side of her sweet tummy.
People ask us all the time how we first knew something was different with Anna. This picture above explains it. See those dark hairy patches on her arm? She's had that patch since she was four-months-old. Other similar patches have popped-up all over her body (thankfully none are smack-dab in the middle of her face yet!). This was our first clue that something was going on with her little body. We've decided to post this picture for a very specific reason. When we were trying to google what these hairy patches could mean, there were no pictures on the internet of this (that we could find). None! It turns out, these patches or tufts of hair are a very rare manifestation of Gorlin Syndrome. Our pediatric dermatologist checked her 'literature' and called us back with this possible diagnosis (which turned out to be correct). She mailed us some information on Gorlin along with a study done that included pictures of three people with hairy patches identical to Anna's. That's when we knew it had to be Gorlin Syndrome. While we were waiting for the genetic test results, we just knew. What else could it be? Since then, we've tried to find this study on the internet, but it's only available to doctors who have a subscription to something-or-other. So, in an effort to help someone else with mysterious hair patches, here's what one looks like in a Gorlin patient.
Well, what's next? Anna has an MRI of her brain scheduled for next week to check for any tumors or cysts. These are also part of Gorlin Syndrome, but they're very rare, so we're not too worried. In the meantime, we have to tint all of our windows to protect her from the UV radiation, which will speed up the BCCs, and we have to pretty much avoid the sun from the hours of 10 a.m to 4 p.m. Other times of day she'll need sunscreen, protective clothing and sun glasses, and a sun hat.
It's a little overwhelming...
But my mom had some encouraging words. She said that this first year it will be hard, of course, to adjust to such a lifestyle change. But after a year or so everything will just be part of our routine that it won't seem like a big deal. I'm sure she's right.
And things could always be worse. Always.
And God is so good. Always.
I know He has a purpose in all of this, and I'm so thankful to be Anna's mommy. She's such a loving girl with a beautiful personality. She and Mary are really getting along well these days, and my heart just feels so full of thankfulness. Not always, like I know it should, but your prayers are certainly being felt right now. And what a wonderful God we have; He loves Anna more than I ever could, and He's going to work everything out according to his plan. Jesus, take the wheel.