Saturday, February 28, 2015

Valentine's Day, 2015

This year's annual V-day scavenger hunt was themed to our upcoming vacation. And this is no ordinary vacation. This is a family pilgrimage across the wild west planned by our wonderful, obsessive-compulsive trip planner, Andy. So, basically, it's going to be epic (and very, very organized).
 First Stop: Grand Canyon

Next Stop: Vegas
In our mad dash to get to our next clue, we dropped our "Daddy head." But, we knew we were heading to the Sequoia National Forrest. For children living in Edmond, the closest thing is a tiny tree in the yard.

 Next Stop: San Diego
 And finally, LA

And finally, squealing hugs
This man....

Thursday, February 5, 2015

When Your Kid Has A Thing, Part 2

Part One is here.

While I do agree that earlobes don't seem all that necessary, I still wanted my kid to have one. Call me selfish, but I just did.

Finally, we came across a doctor in NYC named Dr. Tirgan. He was an oncologist, yet he devoted his entire practice to the research and treatment of rare skin disorders, in particular keloid disorder. And after pouring over his research, stalking his website, and calling his clinic we decided that we were taking Mia to see him. Andy and I both just had this sense that his simple treatment made the most sense.

We sent our pediatrician his information and let him know this was who we wanted to see. He didn't take insurance and he was inconveniently (or conveniently, however you want to look at it) located in New York but, and hear me when I say this, I NO LONGER CARED ABOUT ANYTHING BUT MY KID'S EAR.

Hell hath no fury like a woman who can't get help for her kid.

Thankfully we decided to keep one more local appointment with a hand surgeon that our pediatrician suggested. We weren't too hopeful because, hand surgeon, but for some reason we went.

It turned out to be one of those moments where you know that the Lord had you right where he wanted you to be. This woman (Dr. Sylvia Gray at Mercy I35) was perfect for several reasons: a) she practiced for a year in Africa and saw keloids all the time, b) she trained in a completely different part of the country where she worked with many different ethnicities and saw keloids a lot (at this point if a doctor had seen one at all we felt like it was a lot), and c) she was more than willing to work with us and Dr. Tirgen in NYC.

I almost kissed her.

We contacted Dr. Tirgen in NYC and he suggested talking Dr. Gray through the procedure and letting her do it in OKC.

I almost kissed him through the phone.

And now, four (or is it five? I've lost track) procedures later, Mia is winning at this whole keloid thing!

The finished product (for now). 

We've now started compression therapy 20 out of 24 hours per day. She will most likely have to do this for a couple of years.
compression piece she sleeps in:
 her day-wear:

She doesn't love having "a thing." But you know what? She doesn't hate it either. It's her thing. She may as well enjoy it. It could possibly get her out of PE if she's desperate ("I should probably skip dodgeball today because, you know, the keloid.") and her compression earrings make for great conversation. Dr. Gray even found a lady on Etsy that will make fancy ones for special occasions. Bring on the bling!

Both Tirgan and Gray have warned us repeatedly that this is a long process. That Mia might have to have treatments well into her young adult years. That it could happen other places on her body. And this little girl just shrugs and starts talking about her latest Minecraft invention. 
I think our kids have a lot on us when it comes to accepting the curve balls that life sometimes throws. I have learned a lot through this process (which is minor and simple compared to what a lot of people face).

I think I need to be more childlike and less childish. I'm thinking Mia can teach me a lot about that.

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.