Sunday, August 15, 2010

My Name is Joshua and I Have a Nevus

Joshua had his yearly appointment with the dermatologist last week. The appointment left me uneasy. Let's start with the basics.

What is a nevus? Nevus (also spelled naevus; plural nevi) in the broad sense, means birthmark. There are several types of nevi: epidermal, melanocytic and connective tissue nevi. Melanocytic means that it is pigment-based. Congenital means it is present at birth.

Nevi are the most common abnormality of the skin. They apparently serve no function. Normally, skin gets its color from melanin, which is produced by cells called melanocytes. Melanin is human pigment. Normally, melanin is distributed fairly evenly throughout the skin. Congenital melanocytic nevi, on the other hand, are made up of pigment-producing cells called nevomelanocytes. These cells are not evenly distributed. When many nevomelanocytes are clumped together, they can result in moles on the skin because of the higher concentration of melanin (pigment).

Joshua's nevus looks like this:

It has grown proportionally with his head growth through the years. When he was born we took him to a pediatric plastic surgeon. She told us that it would require several surgeries within the first two years of life to remove it and that that area would never grow hair and likely he would lose the muscle that connected to his eye.

We got a second opinion and then a third. The final opinion was from a pediatric dermatologist (who we saw again this week). On our first appointment she gave us literature to read and we felt comfortable with the 'wait and see' approach.

This week we had our yearly appointment. I left feeling uneasy. Joshua is at a heightened risk of melanoma cancer because of the nevus. She said 5%-8%. That's like 1 in every 20. Feels like a high risk. I asked what happens if it did show signs of cancer and she replied, "It's hard to catch early and if not caught early..." That was enough for me! Why are we not checking this like once a week? Every day? I'll do whatever it takes! 

 She basically said the decision is always left to us. No guiding, no help, just, 'make your decision.' I then looked into it a little deeper and have since had some questions.

I will be calling our dermatologist tomorrow and asking some specific questions. I will then likely try to find a specialist and get another opinion. Looks like the closest specialists are Chicago (the #1 choice), San Fransisco and Utah. All of these will be looked into and researched. I'm hoping that a specialist will say the same thing but am uneasy with the lack of knowledge and investment being put forth by our doctor so far.

You've probably never even noticed Joshua's nevus. We've been really good about the kids wearing hats when outdoors. And his hair covers it so well, it's never been something that peole have noticed. To us (and everyone) he is just Joshua. And we love our Joshua.


Kim said...

Oh Amber! That just sounds terrifying. :( I hope that you get batter answers from a specialist. And you're right I've never noticed it, in person or in pictures. I'll keep you guys in my prayers that it's nothing to worry about!

Carrie said...

Amber I am so sorry that you guys are going through this! Keep searching until you get the answers that you need trusting that God will direct your steps! He gave you Joshua and He will take care of him. We will be praying...Love you

Jens Hegg said...

when you say 5-8% do you mean 5-8% of kids with a nevus get melanoma, or that the risk is increased 5-8%? The difference between the two is huge.

Mauricio said...

I just had a niece born yesterday with the same kind of nevus so I would like to stay in touch with you to exchange information about this nevus...

Philomena said...

Why not ask advice of Facing the World charity UK (site online)? They have removed nevuses very successfully. They do absolutely fantastic work.

Kimberly Dawson said...

Yes please text me asap 856 842 6209. My 1 year old has this and im highly concerned.