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Sunday, February 20, 2005


If you've been following my adventures, you know that Lucas had Kawasaki Disease back in December (if you're new, read about it here); yesterday the International Kawasaki Disease Conference was held in San Diego. There was a parents' symposium, so Beth and I went to check it out.

It was interesting; lots of doctorspeak, but when your kid gets a rare disease that very little is known about, you suffer through the nomenclature. We're past the worry stage; long-term studies show that when caught and treated early, the vast majority of kids grow up to lead normal lives. One bit of advice given to us: make sure Lucas leads a healthy life. As the disease impacts the circulatory system, vessels and arteries can become a bit harder; that can be made worse by smoking, poor diet, lack of exercise, etc. Doctors who know Kawasaki Disease agree that sheltering your kid from sports and exercise is a bad idea. Frankly, I'm not sure we COULD keep Lucas from running around; given that he spends every waking minute hauling ass around our place,I'm surprised college football recruiters aren't stopping by already.

Afterwards, there was a Happy Hour(is that really the best name for a gathering of people whose kids have had a terrible disease?), and we made a couple of new friends. Steve and Dona Neves (yes, one "N" in "Dona") came to the conference from Abilene, Texas. Both are teachers there. They're a young couple, a few years younger than Beth and I. We spent time talking about our kids, and Kawasaki Disease, of course, but we also spent a lot of time chatting about San Diego, and Texas, and work, and other stuff that you talk to people about. They're thinking about moving out here, getting out of the small town Texas life.

Their son's name is Luke. He caught Kawasaki's back in December, but unlike Lucas he didn't get the treatment he needed. He was 14 weeks old when he died.

How do you go on after that?


At 6:02 AM, Blogger jeana said...

When I was in middle school, I had to spend a week in the hospital with a broken leg. After a couple of days I was able to get up and wheel myself around in a wheelchair around the Peds ward... down the hall from me was this little boy.. couldn't have been older than 4 years old with Kawasaki disease.. for the rest of the week.. I would go down and talk to him.. At this point, he would scream any time anyone with a whitecoat would enter his room.. we figured out a way to distract him enough for the nurses to do what they needed to do (including suggesting the nurses wear something other than white). It was after that stay in the hospital that I decided I wanted to be an occupational therapist when I grew up.. (I've since landed in graphic design)

all that to say... i do pray and hope that Lucas is able to grow up healthy and lead a normal life.. and that he will slow down a bit for dear old mom and dad. :) blessings, -j

At 7:16 AM, Blogger Mr. Hibbity Gibbity said...

I've found that life has a way of pulling us along, even if we think we've stopped dead in our tracks.

So really, you go on, because life goes on and takes you with it.

Not exactly "inspiring" or "insightful", but it's all I have right now.

At 8:06 AM, Blogger RuggerJay said...

Two things - thanks for the kind words; the tragedy with this disease, as with a lot of rare illnesses, is that awareness often makes the difference between a happy ending and a tragic one. Steve and Dona's doctors had no idea what Kawasaki's was. Jeana, your IV questions are posted back in the other Comments post - have fun!


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