Wednesday, May 25, 2011

registered...

It's finally complete! The package has been shipped off and I (Amy) am breathing a big sigh of relief...

You see, a few months ago, we decided to participate in the national alopecia areata registry. It's a 10 year study being done through MD Anderson in Houston to collect information and blood samples from alopecia patients of all ages for future research and treatments in the alopecia world. In Marc's words, this was a way we could "love our neighbor" by completing this process and potentially help other kids in the future with alopecia.

As silly as it sounds, it's really been weighing on me. I haven't filled out that much paperwork since we were adopting Caroline!! It involved taking photographs, scheduling & paying for a doctor's appointment to complete some of the paperwork, and getting 3 tubes of blood. (yikes!) The bloodwork was obviously my biggest hang-up when I had doubts about whether I wanted to do this thing. In my heart, I have wrestled back and forth with the question: Should I subject my child to unnecessary pain for the good of others??

But it's done. And I'm glad we did. And I'm sooo proud to say my daughter was the BRAVEST of girls today when her blood was drawn! Just a few tears initially, but then she found great interest in watching the tubes fill up with blood. (of course Mommy wasn't looking...) :) I'd like to say Caroline's motivation was to help all the other kids out there with alopecia, :) but I'm sure it was most likely the promise of ice cream afterwards! ha ha... I am still beyond proud of her for how still & cooperative & mature she was. The lab workers were so impressed with her that they gave her a $10 Wal-Mart gift card and some fun necklaces! (not a bad deal, eh?)

So now this blood will head to Texas overnight and all the forms will be processed and reviewed. If there are treatments that arise in the future, they will be able to contact us to see if we're interested in trying one. But more than anything, we are praying that this might be of help to the scientists who are diligently studying and working even now to find a cure for this autoimmune disorder. (and since this past year has been an exciting time in alopecia research, perhaps this will help it along even more, right?) Who knows.

But at least it's over and done with. And it's nice to feel like maybe we've done something for the other kids and parents who will one day experience what we've already been through.

And now, back to racing Thomas the Train engines... :)

3 comments:

  1. You girls gave the gift of love, which is the greatest we can give. Caroline was brave and amazing. Your daughter is going to be such an amazing light to all of those around here. Reading your post this morning overwhelmed me with joy. Thank you for what you did for the lives of others. I know the Lord is smiling : )
    Love,
    Anne

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  2. Nanny & PapaMay 26, 2011 at 8:06 AM

    Caroline, we are so proud of you. You are a wonderful young lady! See you soon. We can hardly wait.

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  3. I think that's a good idea. If there is a cure soon, you will know. If there isn't a cure, when Caroline gets older, she will know that you've done everything you could. She's going to be a winner--with or without hair. You are all living out God's plan.

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