Madeleine's Journal

Welcome to Madeleine's Web Page. It has been provided to keep family and frends updated on her medical condition.

In Feb. 2004 she was diagnosed with juvenile dermatomyositis. It is a very rare auto-immune disease. Some of the symptoms include: progressive muscle weakness, active inflammation of the muscles, muscle pain , muscle atrophy, muscle contractures, fever, rash, fatigue, malaise, irritability, weight loss, difficulty swallowing due to weak muscles, joint pain and inflammation, calcium deposits under the skin (calcinosis), vasculitic ulcers, slowed growth, and mouth ulcers. We keep finding out about more but that is enough!

Because it is so rare there is little research being done. There are no set treatment protocols. They just try different combinations of the same (older) drugs to hopefully get a good response.

Currently there is no cure.


Visit Cure JM to help us in the search for a CURE!

Big hugs and kisses to our dear friends that have created their own Madeleine pages! Please visit them!
Marlene's Madeleine Page
Princess Madeleine page by Happy Trails Carriage



Please leave Madeleine a message in her guest book. She loves to know you are visiting and reading. Thank you!

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Madeleine's own invention, The IV Bowl



The IV Twister. It's always nice when Willie is running around the game trying to avoid the tubing.


Outside Chapel Creek B&B in PA. She's under her parasol to minimize sun exposure.



All little girls with JDM should have a Mercedes limo and driver, right? That's Mad in the middle.


Getting arrested by a Imperial TIE Pilot at a Star Wars event. Yes, he is holding her at blaster point!

Jedi Knight Madeleine with R2-D2


I'm going to Disney World!!



Playing with the fun volunteers at Give Kids The World

Being an artist is messy work!


Working with artist Christopher Martin at his studio 7/13/07



Mad's new DO!


Madeleine with Leo the baby lemur. Courtesy of our friend Danny with Creative Edge Photography www.filmbusters.net. Thanks Danny!!

Madeleine and Little Willie courtesy of Danny from Creative Edge Photography

adopt your own virtual pet!

Journal

Friday, July 11, 2008 8:19 PM CDT

First of all I want to thank the academy and to everyone who helped get me here today....wait, wrong speech. I am so honored that my new BFF Kevin McKeever gave us the very cool I Love You This Much Award. Isn't that exciting?! You know it is! *waves to Kevin* He has a very funny blog and I suggest you take the time to check it out http://www.blogonkevin.blogspot.com/ you don't want to be drinking while reading if you care about your keyboard. Thanks BFF Kevin!! *xxoo to Things 1 and 2*
More on the award below.

So, what is going on here at Camp Chaos? To be honest, the girl looks really good. So good that it worries me in fact. (Warning - I'm not going to be optimistic)
Every time in the last 4.5 years that I get to feeling good or things are looking up, the rug gets yanked out from under us. It's been one step forward and three back for what feels like a lifetime and I am not ready for that big ol' let down.

She does look good. Look, well looks are not what counts and are very deceiving in autoimmune diseases. We all know that and have learned to deal with it. People who don't know are the first to say "But she looks so good".

We are working hard to stay ahead of dehydration. She's going through 3 to 4 liters a week and it makes a big difference. The temps have been really high and we have been indoors as much as possible. I think we have played every game and watched the same movies over and over. She watches the clock wanting to get out and take a walk or go swimming. We need it to cool off!

The plan is to see Dr An, her GI doc, just before we go to Chicago to see doc there at the end of the month. They also have a pedi pulmonologist that is going to see her about the lung inflammation issues. I've been doing my best not to think about that part. :(

She has been feeling better since they doubled her methotrexate dose back up. It was very exciting to be tapering it but when the pain and symptoms come right back it's not so good. I would estimate she has pain 3 to 4 days a week instead of daily. Much better!

I have copies of the catalog the Girl is in but I will have to get Andrew to scan and crop some pics of her for me to add in. In case you missed it I did change the pictures above, finally. It was very exciting to see her smiling face in the catalog but she looks so OLD in it!! ugh.

Did you guys hear there is a new Star Wars movie coming out soon? Yep, and that's pretty darned exciting.
In Japan they have these little bear thingys that are a Pepsi promo. They are Star Wars characters and we are looking to score some if anyone has any contacts in Japan. ;)

*clears throat* Now I get to give out a couple of awards.
First to Mad's closest friend Brianna. Like Madeleine, her case has been very complicated and rough.
We travel together to appointments in Chicago and the girls are on the phone with each other constantly.
http://www.caringbridge.org/tx/brianna/

Molly Tereck, an amazingly brave mom who has Multiple Myeloma.
http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=mollytereck

If you won the I LOVE YOU THIS MUCH award:

1. Post the I LOVE YOU THIS MUCH blog award on your site.
2. Name eight other nominees for the award in a post, and link to them
3. Cite this blog as the source of your award.
4. Post the award rules.

Hope you guys are having a great summer!! Did you like the new pics???

All our love,
Connie and Madeleine

Hospital Information:

Children's Memorial Hospital - Chicago, IL
Medical City - Dallas, TX

Links:

E-mail Author: cgoldtx@aol.com

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