History

Friday, January 2, 2009 6:45 PM CST

Happy New Year!

I know, I've done a terrible job of updating lately. Watch for a message this weekend - I promise!

It's been really busy and I'll fill you all in.

All our love,
Connie and Madeleine

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

Tuesday, June 17, 2008 8:24 PM CDT

We have our targets locked on Summer here at Camp Chaos. Things have been busy as ever! Let's see, we are still set to see Mad's Dr and the pulmonologist at the end of July. I am not very good at waiting for stuff like this...but, oh well.

Recently we went to Reading, PA where Madeleine was in a photo shoot to be in a catalog. She had so much fun and we enjoyed visiting that part of PA. The actual shoot was outside Baltimore, far out in the countryside on a farm. It was beautiful!! She loved getting her hair styled and makeup done. The stylist had this special iron that put waves all down her hair. Yes, I have photos and will get them uploaded...soon!
On this farm they had alpacas (geez, that was corny!!) and they were gorgeous! The guy who owns them took Mad out so she could hand feed some. He told her that some people call them "pasture poodles"; needless to say, she was in love.
When we left the photographer's we headed over to visit Terry's cousin Julie and her family. They live in that area in an amazing stone house that they have restored themselves. Madeleine had a ball visiting and she adores Julie and Tom. They are both opera singers and have loads of fun costumes. She could have spent the night playing with Julie in them. Their son Matthew is a doll and Madeleine had so much fun playing with him.

We returned home in time for dance recital and for Grandma to come visit from MI. There was a lot of cooking and eating going on here those days. :) We fit in some shopping over in Waxahachie and a trip to Fossil Rim to feed the deer-things. It gets too hard to sort out what is what since there are so many "deer looking" animals there...so we call them all deer-things. Deer thing food was tossed all over my car and Willie has been chomping on any stray piece he mine from under the seats.
Recital was amazing! The girl was in three dances and she had an absolute blast. This was her 5th year and she was in a group of kids that received awards acknowledging that achievement. It's a HUGE deal for the girls. Madeleine has only been talking about it for oh, maybe the past 4 years.

Tomorrow we are off to Pittsburgh - we're doing both ends of the state in less than a month! We are
going to attend a fundraising event for Cure JM and meet with some other families and JM patients.

The girl is feeling pretty good. Dehydration and her weight are big issues at the moment. I am not going to get into the lung "stuff'" until after we meet with the Drs in July. Can you tell it's bugging me??

OK - I must get to packing! Thank you all for checking in on the girl! I hope everyone is well and things are peachy in your worlds.

All our love,
Connie and Madeleine

Saturday, May 17, 2008 9:20 PM CDT

Thought I better check in with a quick update. Still no plan on the pulmonary stuff...and I am still
pretty stressed over that. Her liver functions are still too high for the docs to be comfortable raising
her methotrexate dose...which does not matter because it's being held at the moment. :(
This is because the girl has an infection in her port. It's just plain old staph but she's getting
vancomycin every 12 hours. It's been sort of tiring because her night dose ends at 1am. We have to
time it around lab and nursing hours to get the troughs done. All we need right now is a clear culture!! Be thinking CLEAR culture! Thank you. :) Since she gets "redman" from the vanc we have to give it over 3 hours. Oh! Sorry, she just corrected me, it's "redGIRL".

What else is going on? Well, before we started the antibiotics she had some pretty scary fever. It is a
blessing that we have doctors on board that act quickly..most of the time. They were quick to get
her on meds and that stopped the fever.

Pain has been ok and she is not complaining too much. She is falling more but it could be fatigue from
the heavy drugs. This next week she gets IVIG so maybe that will give her a little boost.

She is getting so excited because dance recital is coming up soon. Her costumes are darling and she is ready.

We were able to see Prince Caspian last week and it was amazing! Thank you Becky and Zane!!
We love you guys!! It was so much fun!

Here is a MMQ from this past week:

She was watching something on Cartoon Network and I asked her what it was -
Mad: "I don't know the name of it but they are going to be doing some Shakespeare in a minute"
Me: "What? How do you know that? When did you see any Shakespeare?" We had just flipped to it and
there was no mention of Shakespeare..besides it was Cartoon Network?!
Mad: "Mom, there is a lot about me you don't know."
Me: ???

OK - it's bedtime and I would not want to cause a disturbance in the Force by keeping her up.

I hope everything is going well in your world. Thank you so much for continuing to check in on
our Girl.

All our love,
Connie and Madeleine

Sunday, May 4, 2008 5:24 PM CDT

Been working on an update for several days but you know how that is...

We were in Chicago a couple of weeks ago for Mad's Dr appointment. They wanted us to see one of the
pedi GI's there and she is in agreement with our Dr here. Need to keep the g-button or we will not be able to get enough nutrition in her. They want me to add duocal to her food - it's a "fat" powder that will give her more calories...or a lot of diarrhea. Nice? No!

Then she had a pulmonary function test, it's a regular test our Dr wants done and they have always been fine...until this one. I have not been able to speak to a Dr about how this one compared to her last one, other than this one was not good...the last one was fine. Based on the PFT they did a high resolution CT of her chest and it showed bronchiectasis in both lungs and various bronchi are larger than adjacent pulmonary vessels. They also noted bronchial abnormalities in both lower lobes. Yep, that is straight from the report.
The plan is that we are seeing a the pulmonologist at Children's Memorial that works with Dr. Pachman at our next visit.

She had some decrease in strength that surprised me a little. Her hand strength was down 20% from December. This was unexpected since she has worked hard on it with her OT. Oh well, I guess we will be playing more games and drawing lots of pictures. Based on everything at our visit the Dr wanted to increase some medications but she decided to wait on labs to come back. When they were back her liver functions were higher than the Dr is comfortable with to raise meds. For now we are giving her extra folic acid and late next week they are going to draw some extra liver labs (say that 10 times fast!) and see if they have gone down enough to increase methotrexate. She is having so much pain that I am ready to try it...as much as I don't like it I never thought I would be saying that. :(

We had to start her back on procrit because her RBC is so low. It's been hovering around too low for awhile so I hope this will get it bumped back up. Tomorrow we should see if it has helped any and figure out if she needs more.

When we were in Chicago her Dr asked if there was any change in the family history. Madeleine thought that was funny and was giggling...I said "no" but then she decided that they need to know that I (as in me, mom) have cataracts. Why is that funny? For some reason my loving children think it's fun to pick on their mom.

Her next appointment in Chicago will be in July. I need to get a good photo of the girl in her new glasses and post it. Be watching!
Still getting dehydrated, still having pain.....other than that things are peachy. Do I sound crabby? It's just been that kind of a week. We do have something awesome to look forward to -----> the release of the new Star Wars book Invincible on 5/13! We are counting down the days here.

Gotta get ready to see the Stars finish off the Sharks tonight. Go Stars! Look out Red Wings!
:)

All our love,
Connie and Madeleine

Tuesday, March 18, 2008 1:29 PM CDT

Hey! First of all we want to send a shout out to all of Granny's (Mary) customers that check in on our girl! Thanks guys for keeping up with us - we appreciate you!!

Where did February go? Days just keep flying and one day I am going to manage to catch up!

We have been very busy doing school work and just enjoying life. The girl fought through the infection like a champ and her port is clear again. She was not thrilled with all the vancomycin but it did the job. We (ha ha!), ok she has been working hard in PT and OT to get strength back from laying in bed so much when she felt bad. This morning was her best and hardest PT work out yet. We could tell she was getting really tired and I have a feeling we will pay for it later. She enjoyed some relaxing during OT because she was swinging in the "body bag". It's not really called that but Madeleine and her PT decided it looked like a body bag and that name stuck. Any other child would be traumatized if they were told they were going to swing in a body bag...not this one.

Overall, I think Mad is doing very well. Her hands and face have been very clear but she is very pale. I did notice today that her nailfolds were pretty red and swollen. I will have to wait until she is sleeping to get a good look because she gets mad at me. Those capillaries getting inflamed indicate active disease.
Her cyclosporine level is all over the place since she throws up several times a week. Last night we attempted giving her a bolus of her formula thru her mic/key button...it was less than 2 minutes before we had a bucket of formula. We took a photo for the Dr. He wants us to video tape her getting bolus feeds....so he asked for it. yuck!

Mad got a big treat recently. We took her to All-Con in Dallas to see the Star Wars characters! She was so excited and had been looking forward to it for weeks. I have not seen her so excited about something in ages. William was into it also...just not in costume and into the Star Wars stuff. Mad was in awe over the stormtroopers walking around! They had three of the actors from the original trilogy there. We went to Star Wars Fear Factor and it was a lot of fun! Since it was All-Con there were other things there. Her comment after meeting The Ghostbusters "Those guys are just weird". We did not encounter any Trekkies, she is not into that.
Here are some of the highlights of her day:

Visiting Vader's 501st

This guy looked like he was just back from Tatooine.

Arrested by an Imp (Imperial) TIE pilot!! He held her at blaster point!! She loved being called "rebel scum!" by the Imps.

R2 D2 was there!!! He is just so cute!!

Hanging out with some of the other Jedi.

Captain Jack Sparrow was there too!!

Swinging in the body bag swing.

Best MMQ lately:

"I might be an 8 year old but I am tougher than I look!!"

One I hear daily:
"You are soooo annoying."
To that I always reply:
"Thank you, Madeleine."
She comes back with:
"ARGH!! That was not meant as a compliment MOM."

Hope everything is great in your worlds! More soon....trust me!

All our love,
Connie and Madeleine

Thursday, January 31, 2008 2:25 PM CST

Her cultures are postive and it looks like staph. :(
They will know more in the next 24 hours. Yesterday we started vancomycin every 8 hours...the 2 am dose was not as bad as I thought it would be. We dug out the old "IV bowl" and it's back in service with her pump and medicine. She carries it around balanced on her head. I will have to try and get a pic of it! She is pretty crabby and just lays around.
When they started the first dose of the vancomycin she turned red right away. It's a common complication that is harmless...you just turn red. They call it "red man" but we call it "red girl". You just slow the rate when this happens so she gets her dose over 2 hours.

Will keep you posted. Thanks for hanging in with us! I know I owe loads of e-mail - I have not forgotten.

All our love,
Connie and Madeleine

Tuesday, January 29, 2008 12:50 AM CST

We are still here! I know I am in the doghouse but it's a place where I am quite cozy. :)

First the medical stuff - the girl started running a fever night before last. They drew cultures yesterday but I don't think we will get the preliminary results until morning since it was close to 5pm when they hit the lab.
We are keeping naproxen and tylenol on board but the darn fever keeps coming back. Last night it was getting up to 102.6 - eeek! The doc would like to keep her home and manage this and I am all for that. If it's a line infection we will get meds started as soon as we can get word. I am very concerned that she is only laying around and getting weaker. We do not need her to have a setback since she has been so much stronger lately.
It was difficult getting blood drawn yesterday - from her port is a piece of cake and that is where we always get labs taken from. It's been a long time since anyone tried from her arm and she is a very hard stick...well, nothing has changed. She was such a trooper and just sat very still while Elaine worked hard to finally get the vein. Little Willie sat at her feet offering his support the best he could and I made sure he kept his soggy ball out of the way. He has known she is not well and has made her nuts hovering and laying on her.

She continues to have GI issues and poor absorption. We just went through a hard time of keeping her cyclosporine levels in range so the doc upped her dose again. Maybe that will help keep it where it should be. She has days where nothing will stay down and we have to just keep her hydrated and plenty of zofran close by.

I am so proud of the hard work she has been doing in PT and OT. Her arms are not very strong and her therapist has some very clever ways to get her working on them.

Where have we been? I guess I just get really quiet when I am stressed and out of sorts. No comments and you know who you are!! I DO get quiet!

Thank you for hanging with us. Some days I just want to cover my head up and see if tomorrow will be better. I keep replaying the day the Dr explained to us what was wrong with our girl and how she kept saying "Oh, in two years she will be in remission and this will all be just a bad dream..." HUH???
Closing in on FOUR YEARS and where is the end?! Then I have to remind myself - is she better than she was 4 years ago? Definitely! No question about it! Is she better than one year ago? Yes, there is no doubt about that. I am going to beat myself up over not taking her to Chicago sooner for many years to some. That was a turning point and she has improved more than we dreamed. In spite of that she still is on a load of medication, deals with weakness and pain on a daily basis...the list goes on. Does she complain??
No. She doesn't. You would think that would make it easier for us but it really doesn't. Children should not have to learn to accept being sick as the way things are going to be. They should not have to make sure Mom does not forget that afternoon dose of CellCept or that we make sure we don't forget that at 10am she gets her cyclosporine. Her calendar has IVIG days marked on it and days that her nurse is coming to access her port.
Sometimes I just need to remind myself that if she can cope with things so well then I need to just shut up and cope too.

I wish you could see her right now. When I was at Target earlier I grabbed her a pack of Star Wars valentines. She is in Star Wars heaven and is so pleased with the General Grievous tattoo she applied to the back of her hand. Yes, there is balance in the Force today....this has not always been the case though.
Recently the good folks at Webkinz finally saw the light and came out with a black poodle. She was so excited and we had a few very tense days when our local Webkinz dealer did not get them in. All of Mansfield and south Arlington knew it when they finally arrived because she was screaming with joy when I carried it in the house.

It's a really windy day and since I have a sick girl we will probably spend the afternoon watching Star Wars and playing with Star Wars valentine....maybe we can fit in some school work too.
May the Force be with you.

I will update when I get culture results tonight or tomorrow - I PROMISE!!

All our love,
Connie and Madeleine

Sunday, December 2, 2007 10:20 AM CST

Happy 8th Birthday Madeleine!!

We have a big update coming this way soon. New photos too!
There is a lot to tell and we have been so busy here getting ready for the holidays, birthdays, and a trip to Chicago for a check up is on the 19th.

The girl ordered a Star Wars cake and is sitting here playing her new DS game Lego Star Wars. Life is good.

Doing ok healthwise I guess, nausea and vomiting has been a big issue for the last several weeks. She is looking very thin and pale.

Hope everyone has a great day!
All our love,
Connie and Madeleine

Sunday, October 21, 2007 1:35 PM CDT

Warning! You should probably get a drink now since this could get a little lengthy. Sorry!

I guess I will start with the most recent and go backward. The usual chaos here has kept us hopping from daylight to dark - literally!
Madeleine feels pretty good but her blood counts worry me a little. She is very pale and her counts confirmed her RBC is low, hematocrit etc all low. WBC's all low and that worries me too because we are heading out of town tomorrow. We saw Dr An last week and he said we will wait and redraw right when we return to see if her body has corrected it on its own. That was also what Dr. Pachman is hoping, that her counts will come up a little without having to use medications. We all know how good I am at waiting....

She has her leg braces for daytime now and it was a challenge finding shoes that would work with them.
They are not terribly bulky but getting them in her shoes is tough. I finally found some black sneakers that have silver stitching and she liked them....they had to be something she would agree to wear or it would not be happening. The darn things had to be a size and a half bigger to accommodate the braces. Her braces have straps that have puffy little black and white sheep that she says look like poodles.
They are to stabilize her ankles so that her ligaments can tighten. When you have prolonged muscle weakness, the ligaments become very loose. She has this problem in her legs, elbows and hands.
The OT was very concerned about her risk of injury from this. She had an evaluation last week and they are working on a plan for her going forward. Her OT had to use some therapy putty and she put pony beads in it for Mad to squeeze through and look for. As she was pulling and twisting the beads out she told the therapist that it reminded her of "searching through a pet's intestines for something like on Emergency Vets". E-Vets had a whole show devoted to pets swallowing foreign bodies and them fishing them out.

Our trip to Chicago was good and the weather was fabulous. We stayed at the airport so we did not take in any of the downtown shops - thankfully! We had some hotel chaos at first but it all worked out well and the girls were happy as long as they were together and playing. The Dr was very pleased with Madeleine's progress. She is not changing anything right now and told me that we must have found a good combination of meds for Madeleine. Because she is getting the calcinosis and then most is dissolving, we must have hit on just the right medications to control it.
The Dr was most impressed with what she saw from Mad's nailfold studies. These are the photos done under microscope to look at the capillaries and it can tell the Dr a great deal about disease activity in children that have had it a long time. She compared the photos from this appt and from Oct 2006 and was so pleased to see these tiny new capillaries growing behind the looped, tangled and clotted ones.
The Dr explained to us that this means Madeleine has not lost the ability to heal. She quickly cautioned that there is no way to determine how much BUT this is a wonderful development. In many cases after years of active disease you cannot always gain back what is lost. We are so pleased to get positive news!
It was really amazing to see those tiny red thread for ourselves. They were not there a year ago and now they are!
Now, I have had the rug pulled out from under me enough that it's tough to get too excited but....this is hard not to be thrilled with. While we were there the Dr ordered x-rays to check for avascular necrosis. Madeleine still has a lot of leg pain and she was on steroids for so long that they needed to rule that out. I am so relieved that there was no evidence of it!
In the same visit is where they spoke about the concern for injury, especially in her elbows. They are very loose and that was the reason we were sent back for an OT evaluation. Her night braces are not working and she hates them. We had them looked at and they are not the correct ones for a child. Naturally, insurance is denying coverage on new ones right now. We are still fighting that battle.

The weekend before going to Chicago we took Camp Chaos to camp! Madeleine's PT and OT is through Our Children's House (OCH) at Baylor. They invited us to their annual retreat that is hosted by OCH as a gift from the IPA. It was at Camp John Marc in Meridian, TX and we had the best time! Terry could not get off work so we loaded up Granny, Andrew, Shannon, William, and Madeleine and headed out. The photographer from OCH will be sending us her photos and I will post some when they come in! There were around 20 families and each one had a cabin and these "cabins" were nice! We had two bedrooms a huge bathroom, kitchen and living room. There was a washer and dryer - in our cabin!! It was awesome! The older kids had fun dong the rope course and we all enjoyed arts and crafts, cooking lessons, weird science, and star lab. Madeleine's favorites were probably the campfire and singing with playing sports in the barn a close second.
She made friends and had so much fun playing, dancing and laughing. This is an annual event and she was so excited to hear that we would be getting an invitation to come again next Fall. What an honor!!
We were all treated so special and Camp John Marc is an amazing place to visit.

In other family news, Andrew was in a car accident on his way home Wednesday night. It was very close to home and around 9:45 pm. When he called we all dropped everything went to him. He was shaken up and had blacked out for a few seconds at impact. The airbags sprained his hand but that is much better than what it could have been. A guy in a pickup darted out right in front of him from a park exit, Andrew had no time to swerve, and they collided. He did not want to be transported to the hospital so they agreed to let me take him so they could x-ray his hand and check out his head. Yesterday I noticed he has bruises on his knees and he is still pretty sore. He is feeling better though and I am just so thankful he is ok. It could have been so much worse.

OK - that is the short version! Tomorrow we head up to DC to meet up with our other Cure JM families for the Marine Corps Marathon. Most of us have never visited DC so we are looking forward to some sightseeing before the marathon. Saturday is the kids run and then we have a panel of JM experts from the US and one from London that will be speaking to our families. Sunday is the big race day and we are all looking forward to that because we had so much fun last year in Chicago. Our team has raised over $170,000.00 at this point!! Thank you to our friends and family that have donated!! You are making a difference and helping us get closer to a cure for our girl and all the other JM patients!!

This past week a dear friend and fan of Madeleine passed away after a long battle with multiple myeloma. Donna, we loved Nettie and are so sorry for your loss. She will be in our hearts always and we are thinking of you.

I will close with a couple of MMQ's:

me: Why don't you clean up that mess you made?
Mad: "Look mom, I'm a little girl, I can only do so much".

"Yuck! This conditioner smells like amoxicillin!"
On trying out a new brand...she did not like it.

Thank you for checking in on us. I will try and update from the road this next week and photos will be coming.

All our love,
Connie and Madeleine

Monday, September 3, 2007 4:03 PM CDT

Pass the catsup! It's catch up time....heh heh.

Camp Chaos has been at a normal pace....crazy. Our visit to Chicago was good and we had an extra day to see some sights and shop. Madeleine and Brianna had the most fun just playing hide and seek with Andrew and Shannon in the hotel room. The room has a little kitchen and it was hysterical to see these teenagers "folded" into a cabinet! The girls were sent into shrieks of laughter when Andrew would pop out of a hiding place at them.

Our doctors appointment went OK. She said that there are some lab results that possibly indicate a secondary or overlapping condition. Oh, and she has calcinosis. This is where lumps of calcium form in the body. Some can been deep enough that you cannot feel them from the outside...others can be near the surface and create open wounds that easily get infected.
Do you remember that soft tissue mass that Madeleine has behind her knee? It's driven me crazy and when the Dr asked me what has been going on I let her know that mass felt different! She confirmed right away that it's a lump of calcium. I asked her if that means there could be more we are not feeling or seeing. She answered me with a quick "yes". This may not sound too awful but it really is. Yes, sometimes these "lumps" will dissolve back into the body. That is not always the case though.
The most common places for calcinosis to develop is in joints - that's not a nice place at all! Ready for more good news? There is nothing you can do about them. If they become debilitating then they can be surgically removed.

Currently we are trying to solve why she continues to have red blood in her urine. They know there is an infection brewing but we are waiting on sensitivities from the lab to treat. Last time they did not mess around and put her on a course of IV antibiotics to kick it. Since her counts are really low there is not much for her to fight this kind of junk on her own.

Last week we went to Hanger O & P for Madeleine to get castings of her legs. She has so much instability in her legs and ankles they are putting her in daytime braces now. Her nighttime braces are so uncomfortable that it's a war to get them on and keep them on. The specialist there is going to look at them and see what she can do to either modify them or switch to something that's more comfortable.
They were great with her about the daytime braces though. She selected the shades of pink for her straps and such. For now she will have EFO's (I think!), they go above her ankles to stabilize and to hopefully help her ankle ligaments to correct themselves. It would be great if she did not fall so much.

We had a scary accident a week ago. Madeleine was connected to her hydration and was going downstairs. Her bag and pump were in a small backpack that she picked up and had on her back. On her way down the stairs I told her not to let the tubing drag behind her on the steps. Before she could reach back and pick it up Little Willie spotted Lilo near the bottom of the stairs and went flying past after her. His back legs tangled in the tubing and Mad screamed. She grabbed her chest and started sobbing that the needle pulled out of her port. I got down the stairs and helped untangle the dog...he was yelping and scared because he knew she was hurt. We laid her on the bed and when I pulled the dressing back blood started running down her chest. The needle pulled downward and tore her skin as it had pulled out. We had to scrub the area with a chlora-prep and it burned so bad. We had to before I could re-access her port and it had to be done soon so her port did not clot. She looked at me very serious and said she knew it had to be done and she did not want to risk an infection or loosing her port. Then she said she could do it and that she would have to cry. My girl was so still and big! I was wiping tears when I had to use the clora-prep on her torn skin.
We got her re-accessed and did a quick IV push of benadryl. Then we flushed, hep-locked and de-accessed.
The benadryl calmed her down and after a quick bandage we went out to have dinner. Never a dull moment here. This week after her nurse accessed her and she had IVIG Little Willie did not jump on her. He has been so careful about the tubing and he lays down by her bag if it's on the bed decide her.

It's been really hot and that can be very hard on the girl. She has been school intensive and knocking out 2 full days of school work in one day. I am so proud of her! Reading is going great and when we were in Chicago we found Star Wars books that are early readers. She loves those!

Did you notice that I finally posted the photos of Mad, Little Willie and Leo? Leo is for sale at a local pet store and will not be joining us at Camp Chaos. Little Willie has developed a new issue since his surgery for neutering and hernia repair...he leaks. The vet told me that incontinence is not a usual complication....well that just figures!! You cannot just pick this little cutie up without a sprinkle. We have a little pair of pants for him but he really does not like them. I think they squish his most private area and he gets a bit odd then they are on him. I am close to putting diapers on this boy! Why is it that people can take a pill for this but not dogs!? If anyone has information or advice please e-mail me...I am at my wits end!

Madeleine and I saw the boys off for another school year last week. Andrew was off to college and William is taking on 8th grade. The first day of school William forgot his lunch and we had to run it over there. Madeleine said that she is going to rig up a system that will speak to William when he opens the back door to leave in the morning. She wants it to shout at him "get your lunch William!!".

I hope you are sitting down because I even have an MMQ to close with!!
It's from school work last week:
Me: "Come on honey and just try and sound it out for me?"
Mad: "No, just tell me what the word is."
Me: "Not happening...you can just sound it out when you are ready. Please try the blend at the beginning, what sound does it say?"
Mad: "You are supposed to be helping me, not interrogating me!!"

Hope everyone has a great week!
All our love,
Connie and Madeleine

Friday, July 20, 2007 7:51 PM CDT

It's almost time! Madeleine and I just watched the newest installment of Harry Potter go on sale in London. It was pretty cool how they counted it down and everyone was yelling. We are getting ours from WalMart here in Mansfield when it's 12:01 am CDT. Believe it or not there will be a pretty substantial crowd - there was when the last book came out. It's not my favorite place to go stand in line but it's the closest so I will deal with it for this.

So, backing up several weeks to get you all you up to speed with the happenings here at Camp Chaos.
Get a Diet Pepsi, I recommend them highly.

Andrew's graduation - we were all very excited and he looked so grown up in his cap and gown. He had to arrive well ahead of us and so we were all waiting at our cars until we noticed all these people mobbing at the doors. There ended up being big crowds and it was pouring down. Not a nice situation for Mad! We did manage to get in without too much shoving; she is so small, people just knock her down. Our seats were great since Shannon knew were Andrew would be sitting.
It was around 15 minutes before start and I asked Mad if we should make a quick ladies room run. Yes!
So off we went - up at the doors to the auditorium the man told us we could not exit from those doors. I pointed out they were right next to the restrooms?? He sent us to the opposite side of the place and then we had to go back through the crowded entry to get to the restroom...located next to the door nearest our seats. We ran in and took care of business...well, during that "business" the woman yells into the restroom that they will be holding everyone currently in there until the graduates were in their seats....what?! People start shouting that they are coming out and she replies they are not going anywhere. Everyone is to stay in this restroom until they "release" us. Madeleine starts sobbing...they were going to make her miss her brothers graduation. While trying to calm her down I make my way to the door and this woman is holding it closed so we cannot even open the door. We knock and she just ignores us and then other people have entered from another door, clueless to the situation, and are starting to push up wondering why we are holding everyone up. Finally this other lady and I grab the door together and we push that ol' woman back from the door. She was not pleased at all. I pointed out that there was plenty of time for us to get to our seats and that the kids were not even lined up. "Too bad - these are the rules - step back into the bathroom" was what we were told. By this time so many people were packed against the door trying to get out that it was stupid. I told her that my child has a compromised immune system and that she was NOT going to stand in this packed restroom another minute. She could either get me someone in charge or I would call 911 and tell them I was being held hostage. That did not go over well at all. The people behind me heard the word hostage and some started yelling...I am so bad. This security person told me she would get her boss but I had to go back into the bathroom. NO, not doing it. She made us all but swear we would not move from the doorway if she went for her boss. OK, I could work with that...but she was only a few feet away when this person behind me pushes people aside and goes running across the foyer. The guard yelled and with 2 others they charged after the renegade. I could not believe how stupid this was getting...maybe I should have just shut up but it really made me angry that they did not say a word when we were walking out. One of the hundreds of people standing around doing nothing could have mentioned that we might want to save our potty break until later!
Finally after the scene dragged on a few minutes she put Madeleine and I behind this counter right out from the restroom. I managed to remind her that she was not a police officer and what she was doing was holding people hostage in a restroom....each time I said hostage you could hear the crowd in the restroom giving their .02 on the matter. The boss comes over and he informed me that this is the rules of our school district that they "close" the restrooms and clear the entry before graduates enter the area. I pointed out that all the people in that restroom and entry could have been in their seats with time to spare in the time this had been going on. No dice...we were their hostages until the kids were seated. Whatever, but we were not going back into the restroom. There was no air circulation, it was very hot and packed with ticked off people. The kids were still not even close to being lined up! Mad and I stand behind this darn counter and she was still crying so I was holding her. I leaned over and put her on the counter for a minute and that same woman potty monitor screamed at me (no joke) to get that child off that counter top right this minute. More tears from Madeleine, that was not called for. She could have asked me to not put her on the counter. I really hate it when people go too far and this lady was on my last nerve.
Finally the kids start walking past us....we had a pretty good vantage point and that cheered Madeleine up. She waved to a couple of Andrew's friends as they walked past...with these looks of "what are you doing out here?" I would shout over to them "we're OK...they are holding us hostage but can go free after you are inside". Andrew came around the corner and looked at me like I was looney, I shouted over that they were holding us HOSTAGE...he smiled, waved and said "That's nice".
After all the kids were past and in seats the security people release us and we walk over to the door...oh no, you cannot enter through that door. We had to go to a specific door on the opposite side and walk back across the other way....whatever!
My family did notice after a time that Mad and I were not back and the damn thing was starting. They were calling my cell phone but the reception was a bit dicey in the loo. I sent text messages to them that we were being held etc. They thought I was kidding and got all snarky like I was out fooling around when my child was about to graduate.
When we slid in our seats I stage whispered over to Mom and Pat the short version. Uhhhh...ok. They just looked at me. Madeleine was like "you should have been there!".

The ceremony went pretty quickly and they started calling names. On the row behind us was a very loud family that went bonkers when their child walked across the stage. I turned right around and complimented them on their style and recruited them to help us cheer Andrew. He had threatened not to go if anyone brought a forbidden cowbell or noise maker. I know Andrew must have been wondering how we made so much noise since he ended up with a pretty decent cheering section. We were all very excited and it was nice.

When it was over and we were walking up the aisle I started telling the story. Everyone still thought that we probably could have come in because they saw others doing it. I guess we picked the wrong restroom!!
As we went into the foyer and stopped to talk a minute my old friend came over and standing just a few feet from us shouts out to "get behind the red line". The carpet had these red stripes and she was getting very serious about moving people - geeze could that woman shout. Now my family believed me ...it was all so stupid.

Just as school was out we had several events all at once and stayed constantly busy. Next after graduation was dance recital. She gets so excited about recital and we had a wonderful time. The staff at A Step In Time here in Mansfield are so supportive and take excellent care of Mad. She loves them and classes are the highlight of her schedule. She had two dances this year and her class looked dazzling in their costumes.

We found out early this summer that Madeleine would have issues with hydration. She normally was getting 1 liter each week by IV but it was not enough. She got very sick after we went to an outdoor ballet performance one evening. Since it was late I figured she would be fine and it was something very important to her to get to go. The next morning she was very sick and dehydrated. The docs have her getting 3 days of IV hydration now....when I told her she just said it was going into her bag and she was not staying home for it.
That's my girl! She does not let most things hold her back!

Need another soda? I do so I thought I would ask you too. :)

I am sure you have heard all the hype over the new Harry Potter movie and book this summer, right?
We counted down the days and could not wait for the Order of the Phoenix to hit the theaters. It was not going to be pretty because Madeleine was convinced that she could go to the very first showing at midnight when it opened. Crowds again....eeeek! Then a wonderful friend came through with the best gift we could imagine. We were able to take Madeleine to a private showing! It was the best time we have ever had seeing a movie! Plus the movie was incredible and we loved it too. We left there so pumped and chattered about the movie all the way home that night. Madeleine says "Go see it!" She gives it a perfect 5 poodle rating.

Next up was the stage show of Cinderella at Bass Hall in Ft Worth. Wow! It was great fun for all of us.

Madeleine had a very cool appointment last Friday. She was invited to work with artist Christopher Martin. He was creating the design for a holiday card for Our Children's House at Baylor. They invited 5 children and everyone worked together on the piece. Mr. Martin is so nice and we were in awe of his studio. It was set out in a wooded area in the country with big windows along one long side. He had two assistants that helped and it was so much fun to watch. They worked in stages and it did not take Madeleine long to have both hands in the paint. They used brushes and hands! I cannot wait to see the holiday cards - the finished painting was beautiful. Mr. Martin made an angel out of Mad's handprints at the top. I have a couple of photos above. Madeleine decided she wanted to be an artist too and have a cool studio like Christopher Martin's! www.christopherhmartin.com

Lately I have been concerned about Mad. She is having more pain and is telling me that her legs feel "wobbly". That is not good at all and I am relieved we will be seeing Dr P in Chicago next Wednesday.
It's been two months and her nailfolds have become very red and inflamed. That is where the capillaries are swollen and loop...it's an indication of disease activity. She is needing nausea medication more often and her weight is at 43 lbs as of yesterday. Dr An said to get her as much hibachi New York steak as she can eat...she's not even asking for it. Maybe I am just worrying too much...will find out next week.

Yesterday Dr An cauterized an area around her g-button. That's not nice but she was a trooper and did not complain too much until we were in the car. We had to stop at our nursing office to get her port accessed, start hydration and get methotrexate. Since the valve on her button was leaking they were going to change it out too. Normally when you take out the saline in the balloon they just slide right out. Not this time - poor girl! It had to be yanked out since it was stuck. She said that from now on they were changing that baby out more often so it does not get so attached to her. I would have yelled but she did great. It throbbed all evening and she was pretty crabby.

I have more photos to post than time to post them! We took Little Willie back up to Pet-O-Rama for another session with our favorite photographer. He is wonderful and I have permission to post the portraits here. There is one of Mad and Willie that is gorgeous! Then he took Mad's photo with a baby lemur! It was precious and liked to crawl up her arm and snuggle. It made purring sounds like a little kitten. Be watching for those!

The troops here are restless and want to go to WalMart to stake out our place in line for Deathly Hallows. They can forget going this early!! I might agree to go closer to 10ish. :)

I promise to do a better job updating on the girl.

Thanks for sticking with us! We appreciate your kind support and love for our girl!

Special shout outs to Becky and Zane - you made her year! Thank you from the bottom of my heart.
Patsy - thank you so much! We appreciate the support!!

All our love,
Connie and Madeleine

Sunday, July 15, 2007 5:50 PM CDT

Did you notice the NEW photos?? Yay!
More soon - and the hostage story too! Also, Harry Potter, Cinderella, painting and more! Plus I have to pack for Chicago. We cannot believe it's time for another doc's appointment already.

All our love,
Connie and Madeleine

Thursday, June 21, 2007 7:02 PM CDT

No, we have not flown the coop...but I have certainly thought about it lately! Things are crazy as ever here at the old camp and I owe you all a big update..and yes, photos. OK - so be watching because I am going to get with it. If I weren't totally exhausted I would do it now but the girl is grating her teeth at me to get off "her" computer. Bri is in the hospital, so they have been playing Webkinz when Bri feels up to it. Mad is determined to be there when she wants to play and to help keep her spirits up. Please be thinking of our Bri tonight. They are having to stop some of the medication for her disease because her kidneys are failing.
It's frightening and we are all so worried. This girl is so tough though, and will fight through this obstacle just like she always has.

Madeleine is doing pretty good and I am afraid to jinx it at this point. She has had a couple of nights where the pain has caused her to wake crying - but not anything like in the past.

We have been so busy with lots going on here - Andrew's graduation, Mad and I getting held hostage at Andrew's graduation...if it's not a policeman holding you then it's being held hostage! Want the whole story?? I don't have photos of that but I do have some pretty nice ones of our newest college freshman!!
Grandma came to visit from MI...and did I mention that we got held hostage?

All that and dance recital too - coming at you soon! Trust me.

All our love,
Connie and Madeleine

p.s. thanks for the donations to Cure JM for the Marine Corps Marathon in honor of Madeleine - XXOO to Amy V!! Our girl is starting to "train" for her One Mile!! :)

Sunday, May 13, 2007 12:34 AM CDT

Happy Mother's Day!! To my mom and all the other awesome Mom's that are in our lives. We love you all and I don't know what we would do without each one of you!

I have a new update coming asap. My main goal is to finally get new photos up. It's on the top of my list!

Most of you don't know but Little Willie had surgery on Friday. It was pretty traumatic for Madeleine but we were able to bring him home on Friday evening. He had a very big hernia and so it was repaired and he was "fixed". This is a very sensitive subject and Madeleine was against it all the way. She has wanted Willie to have a wife and puppies. After a bucket of tears from her I finally found the answer. I told her that Little Willie would be a wonderful single father some day and that (maybe) he could adopt. That got me the biggest smile and a new wave of tears. Now I am telling her that the adoption process can take years to just slow down.

One more quickie update - Aunt Pat!! Cover your eyes and don't read this part because William specifically told me not to say a word to you about this! Are you peeking??
OK - Yes, it's true. William did swallow one of the ear buds from his IPod the weekend before Madeleine had to be in Chicago. We got to visit the new Mansfield hospial ER for some xrays. It passed through without any problems and that incident is behind us. This is the second big scare with him and swallowing a foreign body. I know, it's been 10 years and all that....still!!

Mad is good. Still on track with same meds, PT etc. More details very soon.

All our love,
Connie and Madeleine

Thursday, April 26, 2007 7:14 PM CDT

Shhh, listen. Can you hear it?
I am holding my breath!
We received a call that Dr. P has decided it's time to get Madeleine off the IV solumedrol (horrible high dose steroids). I don't know all the details and I am sure we will get more information next week when we see her in Chicago. She is to get an infusion in 2 weeks and then one 3 weeks from that. They claim that should be the last. Can you believe it? I am still in shock! In the past 3 years when we have gone to 3 week spacing on solumedrol her disease activity picked up. This time it will be different! This time around she has Cellcept and Cyclosporine on board and that has to make a difference....right?
So, for the next 5 or so weeks I will be attempting to hold my breath and see what happens. I want to be positive about this but I am afraid to get too excited.

The girl has been busy with her weekly PT and aquatics. She loves getting into the pool and swimming with her "girls" at Baylor in Waxahachie. Besides her and her therapist, the next youngest must be in her 80's and they are all adorable. Madeleine gets a kick out of them every week.

We have been busy getting her 1st grade work completed. She has done great and we still have a bit more to go before she is on to 2nd. Lately she has been into Star Wars and has wanted Terry to read that to her every night. They have completed 4 of them so far and have just started a 5th! She loves it and has memorized all 6 movies. This child gets into something and that's all she wants...same with food.
She has been wanting hibachi steak from Nagoya every meal. We have finally convinced her that we cannot go to dinner there every night! She is currently limited to going there once a week. Dr An was no help, he asked her if she was eating and she said "Only when they take me to eat hibachi steak". He told me to just keep taking her out for that! He was joking of course. So, her diet consists of chicken and dumplings and then hibachi steak once a week.

Even with the steak she is not gaining like she was. At one Dr's office she weighs 40 lbs and 44 at the other.
That has been unchanged for a little while so we are keeping up with her nightly feedings of 1000 calories. That along with anything she eats should have her gaining but it's OK. As long as she is not losing anything.

Dance recital is coming up and Madeleine is very excited. I think she has been able to go to class more this year than ever. I am so proud of her and she never lets the pain slow her down. We are planning on being in Washington, DC later this year for the Marine Corps Marathon. They have a 1 mile kids run and she is determined to be in it. I hope she can do it.

OK - I promise to do a better job of updating. Next week we will be in Chicago and I will update with details after our visit.

All our love,
Connie and Madeleine

Sunday, March 25, 2007 11:12 AM CDT

Hello friends! We are still here! Camp Chaos has been living up to its name in a big way.
I guess I will start with our last appointment in Chicago at the end of Feb. and work my way up to date.

The visit went well, Madeleine and Brianna love the flights and have a lot of fun together on the plane.
Kim, Mom and I just about have a nervous breakdown over the germs but there's not much we can do about that. At our doctors visit they were pleased with Madeleine's strength but got a very good example of her lack of stamina. The doctor had her stand up and she fell right to the floor. She was able to get a good idea of where all those bruises on Mad's legs are coming from.
Before our visit they had increased her dosage of CellCept and we had talked about starting her on cyclosporin. During the visit the doctor talked about how she would like to wait on that because it would give us something to add if she took a turn for the worse. After seeing her fall and looking over some other notes she told us we were starting cyclosporin.
Since the girl has "looked" pretty good lately this really caught me off guard. I think I walked around in shock for a few hours afterward. Not even that cold Chicago wind could knock me out of the funk I have been in.
Did I mention that it was darn cold?! We go back again on April 8 - 10 and in early May. I sure hope it's not so frigid!
Our flight out was delayed for hours again but thankfully not canceled! By the time we get through security at the airport the kids are completely exhausted and ready to just curl up. Bri turns into a chatterbox as she gets more tired - they are just too funny. I am just so glad they travel so well!

Madeleine had treatment scheduled right away the next morning after we were back home. Every week she is getting sick from it and throwing up. Then the next week she had IVIG on Tuesday and Wednesday. She had been getting a different brand because Gammunex has not been available. Now they were able to get Gammunex again and it made her very sick! I think switching around brands is hand on childrens' bodies because each brand has different ingredients they use to preserve, clean etc. Mad had awful headaches and nausea for days. That kept me very busy being a short order chef and entertaining. The meltdowns have been flowing! Nothing seems to taste good and it makes her very upset. This is a child that loves her food and it has been hard that the things she likes most don't taste good. One of the few meals she craves is hibachi steak at a Nagoya, it's a Japanese restaurant in Arlington. She would eat there 3 meals a day if we could do it! She orders the kids shrimp dinner and I order the New York steak. Then we trade--I get the kids shrimp and she eats the steak! This child can just about eat the whole steak herself too.

One evening a couple of weeks ago she called me over to look at her left leg. It looked like someone had drawn a road map in dark red all across her thigh. I took a photo and e-mailed it to the Dr in Chicago because it did not look like any rash Madeleine has ever had in this JDM journey. We had an answer back shortly "...you have sent me a classic example of vasculitis. Did you get the cyclosporin started?"
Oh yeah, we had. That really was a shocker though. When it's something you can "see" and then it sinks in that this is what is happening inside her. Those blood vessels are so inflamed and this time, for some reason, we could see it.

That all hit in time for treatment with solumedrol and methotrexate that brought on more vomiting, nausea, headaches and so on. Then Little Willie managed to snag some guacamole that hit the floor. We were hopeful that it was not enough to make him sick...oh well.
I had taken Madeleine to PT and we came home and when I opened the door I asked her "What is that smell?". I set my bag down on the bed and Willie hopped into the middle of the bed and started wallowing - OH NO!! I knew then where and what the smell was! He was covered in poop. UGH!!
Madeleine ran for the living room since she knows that she needs to avoid anything like that. Well, she did grab her phone and her dolls quickly out of the line of fire before she ran, screaming. I could hear her on the phone with Brianna sobbing about how her baby was sick. Poor Bri could not understand a word she was saying. I had cornered the dog and put him in the tub and called Terry for back up. Madeleine was able to get me gloves and I washed him really good and could access the situation enough to tell that he was going to have to go to the vet.
We got the bed stripped and into the washer with hot water - yuck!
The vet took care of some gland issues in his backside - which Madeleine knows all about since she has seen the episode of Dirty Jobs where they learn about pet grooming. I called her right away and told her they were getting rid of the "poison poo" just like Mike Rowe did on Dirty Jobs. She loved that and was relieved that he was not going to need IV meds this time.
Just a prescription for his gut and a gentle reminder that he cannot have any food but his. Someone please get Willie to understand that!!
He is feeling much better and Madeleine says it's because they got rid of the "poison poo". Dirty Jobs has really opened up her world, eh?
We took Willie up to Pet-O-Rama yesterday because they had a photographer in and we got his portrait taken. I hope they are good; we don't get to see them for a couple of weeks. He seemed to enjoy the whole ordeal and had fun checking out the other animals there.

OK, so that is the short version of what's been happening. Madeleine has continued to have pain in that left leg and is favoring it. It's been worse over the weekend so we will have her PT check it out tomorrow at therapy.

I hope everyone is good in your worlds. Thanks for not giving up on me, I promise not to be such a stranger...not comments! I said stranger not strange!

All our love,
Connie and Madeleine

Sunday, February 18, 2007 9:18 PM CST

Go ahead and say it...I am SLOW.
I don't know if it's so much that I am slow (no comments!!) -- more like I have just been a bit out of sorts.
This is a strange time of year for me I guess. Facing my birthday is now a painful reminder of another year that Madeleine has been sick. Three straight years of treatment without a break. Doesn't that sound like a long time? 1095 days that she either had medication orally, by IV, pushed through her g-tube OR all of those. I know I would not be smiling like she is. It seems like ages ago that we were sitting there reading out of a big medical journal while the pediatrician told us how it's unusually rare. That was on my birthday in 2004; we certainly have covered a lot of ground in 3 years. All of us have a few new scars and we have certainly learned a great deal more than we ever wanted to know.

Before I explain how Madeleine is doing, I am going to tell you what she is doing. You see, Brianna is in the hospital currently and Madeleine does not have any business going in the "jungle of infection" to visit. She is quite angry at me because she wants to go be by Bri's side and I keep telling her "no". My resourceful girl figured out how to play with Bri without being there in person. They have been calling each other back and forth this evening and they have played party planner. One will call the other and they order and discuss everything from costumes to cakes and decor. I have heard them come up with company names and all sorts of very creative things. Now they have switched to wedding planners - Madeleine is taking the order and Bri is doing the ordering. This is just adorable! It's frightening how they can just order up this stuff so easily and they are not planning these events on a small scale!! Oh my, they just decided on sparkly red shoes for the groom....

OK - now the medical stuff. We were in Chicago for our appointment on 1/31. We left DFW that morning with sleet and light snow falling. For a few minutes it was really pretty until our plane was number 18 or something for de-icing. We sat on the runway for a long time and by the time we were up for de-icing it was warm enough that we did not need it. You know Mad and I are not morning people! The kids held up much better than the grown ups though and we made it in plenty of time to go straight to Children's Memorial.
Our friends from Houston, Nikki and Tanya, were there and it was so good to see them! We only had a few minutes to visit before we were divided into our rooms to wait on the Dr and her crew. That was right at around 1pm and we had left DFW early that morning...did I mention that we did not have time to grab more than a muffin? Mom felt bad for us so she ran downstairs and grabbed a Diet Pepsi for me and a Pepsi for Kim. I can make it if I have that! We were there until very late that evening by the time we saw the Dr and had our plans, orders and prescriptions.
Dr. P was very pleased with Madeleine's strength. She said that we should start seeing some results from the CellCept soon since it's had plenty of time to start building up in her system. We discussed getting her started on cyclosporine and additional solumedrol but we are holding back on that for now. Her labs were not great so she did increase her dosage of CellCept and we will talk more about additional meds when we go back on 2/28. There are concerns about her lack of stamina. She does not hold up well at all. We will go to PT or aquatic therapy and she will be so tired that she will spend most of the next day laying around.
Leaving Chicago was a whole 'nother story! We left the next day and had plenty of time to arrive and get through security. We settled at our gate and waited until time to get on the plane. It felt good to be in our seats and ready to head back home to our own beds. Looking back it was a bit odd that they rushed us to get on board and then we sat at the gate for a long time. The captain came on and told us that our flight had been canceled and to go get in line at a rebooking center in the terminal. UGH One of the very helpful guys on our plane took our boarding passes and told us to just wait on the plane until he had everything worked out for us. It was so nice! We were relieved when he got us on a flight later that evening. Back into the terminal with our bags of medicine and girl stuff we go. Both girls were wonderful! They played and had such a good time while the adults stressed. Did I mention that our flight was originally a 2:30 pm flight?
Our next one was at 6 something and it was looking bad when the other flights before that started getting canceled. Next thing we knew our 6ish flight was scheduled for 8 something. People were starting to arrive so I ran the girls over to the restroom and when I came back Mom was on the phone and looking agitated. They had just announced that our flight was canceled. Mom had already been calling around for hotel possibilities and there was not much close by that was not outrageously priced. I took our boarding passes and got in line at the rebooking center. Let me just say that is a failed idea! There were so many people in line and one agent! He kept making announcements that people should just leave and call from a hotel for a new flight. We were running out of medications, Madeleine was due for IV meds the next morning and the charger for her feeding pump was in the suitcase that was checked. Stupid, I know...
We were also out of TPN (IV nutrition) for Brianna, her formula and were low on her other meds. I was not giving up that easy. The guy at the rebooking counter would not call a supervisor; he sent me to another gate and said to ask them to do it. They did not want to call one either but finally did. The man that came out there was wonderful and after I told him the situation he got on the computer and found a way to get us all to Dallas that night. Two on one flight and three on the other but we were going home! Kim and Bri were on a plane that was parked at the next gate from us. We could see it out our window and Madeleine was watching it hoping to catch a glimpse of Bri. It was after 10 pm and they backed out of the gate and left and we sat. Our captain came on and told us that we had a mechanical problem but he was sure they would get it fixed quickly so we could get on our way. Before you ask me - NO, I did not once say "what next??".
They did get our plane jump started and we were out of there and landed in Dallas shortly after midnight.
We saw Kim at the baggage claim where we had to go on a quest to find our bags. They had some how shown up there on another flight and were at a different gate. Madeleine was wide awake as we were loading up since she had slept on the flight. We were heading south on SH 360 and it started snowing on us here.
I told Terry that we must have brought it with us from Chicago!

It was after 2 am when we had the girl tucked into bed so Terry could read Harry Potter to her.

So, that's really the short version but that's what's going on. More of the same, some days are better than others and still those days when she does not want to leave the house. The mood swings keep us hopping and as long as the kitchen is stocked with stuff for her to prepare we are good. If she would just eat all the stuff she likes to prepare!!

We are running out of possibilities for dressings for when her port is accessed. All of them break down her skin and when we find a good one the manufacturers discontinue it! The one we have tried most recently left behind a very painful raised rash when it came off Friday. If any of you have some dressing insight please e-mail me! We were using Coverlet OR and it works beautifully but they have stopped making it. Opsite, Sorbaview - both those cause horrible blisters to come up. Plain old tegaderm eats her skin up too.

Well, here we are three years later and she is getting IV methotrexate and a liter of hydration once a week. Solumedrol every other week, IVIG over 2 days once a month. I guess I will just brush off this mood or "get over it and move on" as someone I know would say. It's very hard not to wonder if things will be different in 3 more years? When does this child get some sort of break? She's pretty quiet about it and seldom complains and never complains to her nurses or caregivers. It makes me feel pretty selfish for complaining when I think about it that way.

Thanks for continuing to check in on our girl. We appreciate all the love and support you all send our way.
We go back to Chicago on 2/28 and I will not be so pokey to keep you updated on it.

All our love,
Connie and Madeleine

p.s. the party planners are still at it...now they are working out food for some "elegant extravaganza".

Thursday, January 18, 2007 6:34 PM CST

Let me start by saying that I do NOT like cold weather. Chicago was frigid and then we came home just in time to enjoy several days of ice, sleet, and a dusting of snow. It's been raining this afternoon so I am sure that will freeze again tonight...

We had a very productive trip to Chicago. Madeleine's dear friend Brianna and her mom, Kim, traveled with us. Both girls were admitted by Dr. Pachman and seen by her staff and colleagues at Children's Memorial.
They had us arrive on Sunday before 1pm to get settled into our rooms and to be ready for the whirlwind of tests and consults.
When we first arrived on the floor the girls were in separate rooms. It was the oncology wing and we were in the room with a tiny baby that has a brain tumor. She was just precious and Madeleine fell in love instantly.
The nurses realized that Mad and Bri are a team so later that evening they made some switches and put us all in the same room. It was like old times!! The girls thought they were going to be partying into the night...I quickly became the bad guy and said NO to that.

It felt like I had hardly found a comfy place, wedged into the bed with Mad and her arm and leg draped over me, when the nurse woke me up. They wanted us in the pulmonary lab...now. I am sure you all know by now that yours truly is not a morning person...well, the girl is not either! It was not even 8 am!!
I asked if I could put on clothes and get a Diet Pepsi from the refrigerator. She said I had just time for that so I ran. We woke Mad up and put her in a wheelchair where she could glare at me all the way there.
She was not happy and I was worried that we would not be getting any cooperation from her. Thank goodness the man doing it was an adorable grandfather type that told us about his granddaughter.
Mad warmed up to him and he was very patient with her. It took a long time because he was having to work with her to keep trying to complete the tests he needed. During the PFT he would tell her to keep the tube in her mouth and how to breathe. She would take it out and look at him, that would mean doing it all over again...and again. Or she would get tired and stop, that meant starting over and doing it again...and again.
This guy was just wonderful with her. I would have snapped and said:"I_SAID_DON'T_TAKE_IT_OUT_OF_YOUR_MOUTHHH_!!!" or something along those lines. When we were done, I needed very strong coffee or another Diet Pepsi. We went back up to our room and someone from radiology had been looking for Madeleine. Our day was more of the same from there. We were all over the place seeing doc's and getting tested. The ENT Drs were great but I don't think Mad liked them much. They repeated the scope that she had last year here where they go up the nose and look around in the throat and larynx. I told them how she retched and threw up last time so they did not spray in the numbing stuff. That probably did not make it feel very good but she did not toss her cookies and seemed to tolerate it better.
He got a very good look and we think the red and inflamed areas look a bit better. She does not have the burning sensations daily now so that would make sense.
After they were done the Dr did some magic tricks for her and she seemed to forgive him. The nurse came in with a toy that had little poodles in it. It was perfect and just a fluke that she picked something with a poodle.

Our tests were all completed ahead of Bri's so we were discharged on Tuesday and went to stay at the hotel where Granny and Grandma had been staying. It was downtown and next to some very cool restaurants.
We went back up to Children's Memorial to hang with Bri the next day so that we could visit more with Dr. Pachman and a few other parents from the Chicago area.

When they took the photos of Mad's nailfolds they were worse than the ones from October. That means she has more disease activity. They can tell that she has had active disease for a long time because her capillaries are so twisted and clotted. The photos were taken under a microscope and then a specialist counts the capillaries. They can learn a great deal from them and it's pretty interesting to see.

Dr. Pachman decided to start Madeleine on CellCept while we were there. Last night Madeleine announced that she is going to tell Dr. P that she wants to be switched to cyclosporine. With CellCept you have to have an empty stomach. We are supposed to stop her feeding and she has to be NPO for two hours, then we push the CellCept through her g-button and she is NPO for another hour. That's 3 hours, twice a day - YIKES! Six hours a day that she cannot eat or drink. She is so tiny and eats so little you would think it would not faze her...wrong. She got downright angry last week after getting solumedrol because she loves to graze and she loves her food. Well, she knows that you don't have to be NPO for cyclosporine and so she told me she will be discussing that with Dr. P herself.
I told her "good luck with that" and went about my business.

Back to our trip - Brianna was discharged on Thursday morning so they met us at the hotel and we went to the American Girl Place to celebrate her birthday. Both girls were tired and crabby and it was awfully cold!
They had a very good time shopping and then eating lunch before we had to dash off to the airport.
We met really nice people on both flights up and back and the girls enjoyed themselves a lot.

OK - so we have added CellCept and the Dr did not change anything else. Because Mad's case is fairly complicated she does not want to make loads of big changes at one time. We go back on 1/31 and she decide what to change or add next. I was already made aware that we may be adding more steroids. That is not something I look forward to but if it's necessary then we will deal with it of couse.

Madeleine and Brianna are thrilled to be going back at the end of the month. They have been browsing the American Girl catalogs for another swoop through there. I think that Granny, Kim and I need to find a place for "American Mom's" where they cater to us!

When we got back in Madeleine had solumedrol bright and early the next morning. She was scheduled for IVIG yesterday but our roads were still bad so we decided to get it today and Friday instead.
Today she put Grandad though the wringer baking cookies and playing games while her nurse, Tricia, and I crocheted. Mad did get a cake baked for the big day tomorrow. Did you guys all get your invitations??
Madeleine told me she is planning a big bash tomorrow for Little Willie's 3rd birthday.
Don't worry, I did not get one either and I hope it's not too big because she is crabby and feels like crap.
For the last two nights she has been in pain during the night and very crabby in the daytime. Night before last she was crying in her sleep before she woke up screaming. Her pain has not been that bad in a bit so that has me worrying.

I think watching Food Network when she cannot eat is adding to her bad mood. When I just asked her about that she threw a shoe at me.

Thanks for checking in on us. More soon!
All our love,
Connie and Madeleine

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