Wednesday, February 4, 2015

When Your Kid Has A Thing, Part 1

*Mia Lashley approves this message.

My sweet daughter has been on a journey of sorts over the last year and today she told me I should share it on the blog. She said maybe another kid's mom would read it and it would help someone else feel better about having "a thing."

For Mia's eighth birthday she got her ears pierced. It was fairly uneventful (except for the part that was very eventful - the guns going to the ears).

She came home and happily set up her new jewelry holder with earrings in the shape of woodland creatures.

After a couple of months she began to complain about one of her ears. We ditched the cheap jewelry and decided Brighton studs were the only thing that was going to work for her.

Brighton earrings aren't cheap but the are pretty cute.

Another couple of months passed by and she continued to complain about one of her ears. She kept saying she couldn't get an earring through it because there was something inside that was growing. I kind of blew it off because it felt like a little scar tissue knot and I just didn't think it was a big deal. 

Finally, she took her earrings out for about a week because she was cast in a play and she couldn't wear earrings during the dress rehearsals. That's when we noticed this:
 Whatever that knot on the inside was appeared to be growing out of both sides of her piercing.
Andy and I were all, "What. The. What?" 

We immediately consulted our pediatrician who sent us to a dermatologist. After consulting with the derm (#1 of many), he decided that Mia had a skin condition called Keloid Disorder. 

I did the first thing anyone does when they hear medical terms they aren't familiar with, I googled it. I then did the second thing people do right after the googling, I freaked (and banned Mia from the computer for life).

The good news: it's just "a thing," it's not cancer, it's not fatal, it's no big deal
The bad news: no one one the internet seems to have much success treating them, oh, and they don't stop growing!
Google search=bad

Removing it wasn't an option as these types of tumors tend to grow back at an even more rapid pace once they are cut on. So, it was decided that Mia would begin steroid injections, directly into the tumor, with hopes of shrinking it. 

Mia was a champ and sat through months of these treatments, not moving a muscle while someone shoved a needle through this thing over and over again.

I guess we wanted this to work so badly that we didn't notice that the little SOB was continuing to grow every week. Finally Mia had to point it out to us.

Enter freak out session number two. We fired our doctor (Actually, he fired us. I think his words were, "Don't come back, I'm canceling the rest of your appointments.") and we consulted our pediatrician again for Plan B. 

I have a whole new respect for people that face real medical issues that are much more pressing than this, because, wow, this was stressful, and it is nothing compared to what some people face all the time.
  • We took Mia to every doctor that would see us in the OKC area. None of them had a clue what to do with this. 
    • One suggested chopping her ear lobe off and making a new one out of skin from her neck. Um, no thank you. 
    • Several recommended radiation therapy. Don't call us, we'll call you.
    • And the rest were all, "Ummm, I don't think I can help you."
  • So I started calling doctors all over the country.
    • No one believed me when I would call them and tell them my daughter was a) white and b) nine-years-old. ("I'm sorry Ma'm, these don't occur in light skinned people and they aren't found in children before puberty." They do and they are.)
  • Then I joined message boards and chat rooms of people with keloids. They would recommend a doctor or a treatment and we would call or try it.
  • I bought essential oils, snake oils, special creams made by witch doctors in name it, we tried it.
I became a woman obsessed. And all the while this thing kept growing.

I guess I couldn't get a clear shot of it that day.

One day I was sitting at the computer on yet another skin disorder message board and sending pictures to another round of doctors when I lost it. I hadn't shared this with too many people because it's my kids ear, not mine, and I wanted to take my cues from her. Also, I always tried to wait until she wasn't around to make phone calls to doctors because I didn't want her to feel like this was especially serious and I didn't want her to become even more self conscious about it.

But finally I had had it and I sent an email to some of my closest friends and asked them to start praying right then for answers. I was tired of googling. I was sick of dragging my kid to doctors that didn't get it. And I was mad. 

This is America, for goodness sakes, there should be a pill for this!

And about Mia: She took most of this in stride. We kept telling her, "Hey, this is just a thing. Everyone has one. It's going to be fine. It may not be perfect, but it will be fine." 

But really, inside I was sad. At the risk of sounding ridiculous, I was sad that my kid would never get to wear earrings again, ever. I was sad that this is genetic. I was sad that this could happen on other places of her body. I was bummed out that her ear looked weird. I really was.

But she wasn't. She was fine. She seemed to pretty easily accept her thing. In fact, at times she kind of enjoyed the attention she received because of it. She got out of some school. She wore patches and bandages that kids would ask her about. It gave her some street cred.

And as her great pediatrician said, "It's just an earlobe. Who needs them?" And, really, who does?

Part 2 is here.


Ryan and Katie said...

As someone who has gone through several medical issues...some more concerning than others, I'm always amazed at differences of opinions and methods among doctors. We like to think medicine is an exact science that there is an easy answer to but many times there is not... which leads to frustration and stress that some medical professionals can't seem to understand patients having! I'm sorry she's having to go through this although she seems to be handling it well! She seems wise beyond her years for allowing you to share a struggle in hopes of helping someone else!

Ryan and Katie said...
This comment has been removed by the author.
laura jo said...

Oh, honey. I'm sorry you had to find out about keyloids in this way. I found out that I have them after my dermatologist took out a small-ish bump of scar tissue right behind my arm on my back. Now, I have a huge keyloid line. Fun. Times. Especially in a swimsuit. Apparently, they can happen in very dark OR very light-skinned people. And maybe the Sheerer line has a genetic predisposition to them. Goody. Tell Mia that we can exchange keyloid stories when/if I see her again. :) oh, and thanks for those other pictures. Yikes.