Madeline's Blog Archive

Wednesday, December 31, 2008

2008...You are dead to me!

It' almost over. This dreadful year of ours called 2008. We are only a little over an hour away (CST) and I am so happy for 2009 to be here.

The year started out great with Madeline's birthday to Mardi Gras to then all of us trying to figure out why this rash was not going away on our baby girl. Then we were wondering why Madeline's emotions and temper were so altered. Then March 28 happened - the diagnosis.

My boss and a very good friend and mentor of mine was diagnosed with cancer the same week as Madeline. Sadly, he didn't win his battle and died this summer. I still miss him daily. He was a wondeful man.

Then, the hurricane happened...and hurricanes around here are really getting old. Oh, and the economy...ugh. I'm not even going there.

But, the good news: Madeline's health has improved. She is dancing, playing like a normal 9 year old. Rick is still the most wonderful man I know next to my daddy. And Trey makes us prouder every day with his wonderful accomplishments. We also have a wonderful family of support and a faithful group of friends and co-workers who constantly support and pray for us.

2008 is dead to me. Welcome 2009. And for God's sake please bring good health, happiness and love to my family and friends. And most of all bring remission to my baby girl.

Happy New Year!

Tuesday, December 30, 2008

Results are in...

Results are in and Madeline's liver enzymes (AST and ALT) look within normal range. Yee-haw!

We visited our pediatrician today for Trey had to have warts removed - yuck. Madeline came along with us to observe and appreciate the torture her brother was to endure. This is the pediatrician who sent Madeline to the dermatologist, actually pretty quickly. He was so pleased to see how well she is doing and looking.

I'm counting down 2008 and glad to see it go. I've had many wonderful years, but 2008 can get the hell out of here. 2009 has to be a better year and I am looking forward to it's potential.

Monday, December 29, 2008

Blog Hiatus

I've been on blog hiatus during the Christmas break. But I am back on the wagon effective today. Like most, we've been so busy with family, parties, shopping and more shopping. We did have a wonderful Christmas though. The kids got too always. We ate too always. And we spent too always. And we lack from sleep. Christmas Eve the kids woke up at 2:30 a.m. to see what Santa left. We coached them back to bed immediately. Again, a 5 a.m. visit from them. Finally, a little after 7 a.m. we dragged ourselves out of bed.

Madeline's favorite gift from Santa was a vanity set. She can now sit down in her bedroom and apply make-up for hours. She thinks she looks like Sandy on Grease. Trey got a boat, and yes, it was in the living room Christmas morning.

Everyone has commented on how wonderful Madeline looks. They can't even tell she has any kind of rash or redness. She is acting like the Madeline they always knew. In fact, Christmas Eve at my parents house, all she did was dance in the living room. I used to tell her to stop, but not any longer. That baby can dance her heart out.

We went to the hospital today to have her blood drawn. Great experience this time. I handed picked our phlebotomist. It went easy as pie. We then headed over to the gift shop and I let Madeline get another Webkinz. I guess that adds to the collection of 126 Webkinz...not really, but we do have too many. She picked out a dolphin and named it uniquely Flipper.

We should get the results in a day or two. Of course, I will post the moment I get them.

Monday, December 22, 2008

City of Lights

We went to Natchitoches this past weekend and had a great time. On Sunday, we made baked ornaments and plan to paint them tonight. The Christmas Spirit is picking up around here.

Madeline's feet bothered her some while walking in Natchitoches. This is concerning me more and more. She also mentioned to me a pain in her neck, but I am hoping she just slept wrong. Will keep you posted on that issue.

I have to bring her in for blood work tomorrow. Hopefully her experience will be better next time for last time they blew her vein. I'm going to hand pick our person this time.

I've included a picture of Trey & Madeline at the Lights in Natchitoches. Hopefully you can see the lights and fireworks in the background. It was an incredible show.

Saturday, December 20, 2008

Wishing for winter weather (or atleast 50 degree or below temp.)

We are on the down slope to Christmas and we are having a hard time getting into the spirit. Reason feels like summer outside. Okay, I'm exaggerating. It's actually more like early fall. It's humid, sticky and around 75 degrees outside.

We do plan to force ourselves into the spirit by taking a close-by road trip to Natchitoches, LA. They do a great Christmas light display (Natchitoches is actually known as The City of Lights and the location they filmed Steel Magnolias) and fireworks each Saturday night. This has become a family tradition with the Ducote side of the family. We all go up, adore the lights, eat, shop, etc.

Hopefully, some of the cold air they are experiencing up north will blow its way down here. We need it...

Thursday, December 18, 2008

Red Cheeks and Tingling

I spoke w/ Madeline's teacher last night. She is going to assist w/ the taunting at school. I feel better this morning. Madeline does too.

She is still staying "red-free" today. That was a strange fluke that I am glad went away. An online friend of mine mentioned that his son, who too has JDM, has these red flashes as well. I guess this disease always wants to keep us on our toes.

I've mentioned in past blogs that Madeline has tingling in her feet when she wakes up in the mornings. This is still going on. The odd thing is that it also happens when she gets upset or mad. I've always thought it was a drug side effect, which is listed under cyclosporin. But now I am wondering if it is something else or the JDM. I googled (I know I am not a doctor) her side effects and MS came up. I immediately got off line and will not do any additional research on the subject again.

Our January appointment can not come soon enough.

Tuesday, December 16, 2008


Madeline looks good today. Her redness is not prominent at all. I just don't get this disease.

Madeline is having a few emotional issues though. She is an honor roll student and these past few weeks, her school work has not been at her normal level. Also, I noticed tonight that Madeline had "trimmed" her eyebrow. Yes, that is correct eyebrow. Not both of them - only one. I asked her why she did that to herself and she began crying. A few girls in her dance company told her to go look at her eyebrows. Of course they were implying they were bushy. She was trying to trim them herself. Breaks my heart.

At school classmates pick at her about how hairy she is. I keep telling her how beautiful she is, but I don't know how much longer she is going to believe me. Then we have the kids who call her a vampire because she has to wear sunblock or not be in the sun for too long. Her spirit keeps being broken.

I wish I knew what I could do to help her with the hair situation. I've thought bleaching (too extreme), trimming, laser..and then I realize doing something may make the situation worse.

Days like this just breaks my heart for her.

Monday, December 15, 2008

It's maybe back???

I think I've been avoiding the blog because I don't want to write what I think (and deep down know) is not a good thing. Madeline's cheeks and ears are looking red. And yes, it's the old red that we first experienced a year ago. I did a full body inspection this morning and at this time she does not have any papules on her hands, elbows, chest or knees. Neither is she complaining of any pain.

I'm not going to get down on this or anticipate a total setback. I'm just going to be thankful she is staying well, dancing like she loves and not in pain.

She had a big day on Saturday. She performed with her dance company at the Christmas Spectacular. They did a tap dance in a Rockette style. It was great. She performed in two shows and was fantastic. We are so proud of her. Her brother Trey (and dad) also had a big day. They had the Superbowl football championship game and won the title. Great job, guys!

I also wanted to include a picture of Trey & Madeline's Louisiana Snowman. Yes, the eyes are acorns...kind of gives you the idea how tiny Mr. Snowman is.

Friday, December 12, 2008

Snow Day in Louisiana

Not quite a picture you see often in Louisiana. What an incredible day we had yesterday. We woke up to sleet and snow and temperatures in the 30s. I've attached a picture that was sent to me by a friend of "Mike the Tiger" at his habitat on the LSU campus. This had to be a once in the lifetime sight in Baton Rouge.

Well the sleet and little bit of snow we received is gone already - I think temp today is in the 60s. The kids loved the surprise. They even got to stay home from school for they had to close due to icy travel. I know you Yankees up north think that is hilarious.

Madeline still has some redness in her cheeks lingering. I'm beginning to worry. If it continues to progress Dr. W will get a call from me next week. We see him the first week of January, but she may need to have her meds increased. I'm not real excited about that potential, but understand the need. She is not complaining of any muscle that's good news.

Monday, December 8, 2008

It's beginning to look a lot like Christmas

Last night, Madeline made Christmas cookies for the veteran's at the VA Hospital. She is showing off her work in this photo. You'll notice she looks red on her checks. This was right after her breakdown (oh boy, hormones).
She is really getting tired of taking the liquid form of cyclosporine. The taste is becoming harder and harder for her to swallow. We tried a new juice with it last night, but it was terrible. We'll stick with the OJ. Oh- and if you take the liquid form of cyclosporine, Madeline has found that Tropicana and Simply Orange are the best products to help her get the med down.
Madeline has a busy week this week. So do we! She is dancing in a Christmas program call Christmas Spectacular. She is a "rockette" in the production. Their outfits are fabulous. I'll try to get video to put on the site. It should be a great show.

Sunday, December 7, 2008

Hot cheeks...Hot flashes

Madeline is feeling well, but I've noticed she is having more "red check" spells than she has had in a long time. It's not like her rash she had this time last year. It's more that she is hot and her cheeks get red. We've had some cooler weather and finally had the chance to make a fire. It seems she gets a glow from the heat.

Madeline has also been somewhat "hormonal". She has had some crying spells lately. In fact, the bump under her chin that I was so worried about ended up being a really big pimple. Boy, I could not had been happier to see a little puberty on her face. It's baby girl is showing signs of growing up. I hate it and love it at the same time.

Wednesday, December 3, 2008

Good week...

It's hard to believe we are in December. Madeline will be 10 in January so we will soon be in party planning mode. Birthdays are BIG at our house. Can't wait to hear what she has in mind to do. Last year we had a poodle theme birthday party with 30+ of her closest friends in attendance.

Madeline's having a good week this week. Her feet still bother her - the tingling, irritating sensation. It doesn't bother her when she is playing or dancing, only when she is standing still doing nothing...I don't get it.

She also has an odd bump coming up under her chin. I don't know what it is, but we will watch it closely. It doesn't hurt her, so that's atleast a good thing.

Saturday, November 29, 2008

This Thanksgiving - Gratitude with Attitude

This Thanksgiving weekend I can't help but recall how much has happened in our life this past year. It was this time last year when Madeline's first sign of what we thought was "poison ivy" appeared on her face. Little did we know at that time our life was to change so much.

I feel there is somewhat of a conquer at this one year mark. So many families told me it could take a year or two before the effects of the muscle take place. Well, it's been one year. No muscle problems yet. Of course, I more year to worry.

I've completely stopped asking why this disease has happened to my baby. It was not healthy for me. I was struggling, along with the rest of my family. But I was angry too and did not want to admit that to anyone, especially myself. I realize now that my struggling was actually my healing process. I'm not angry anymore and I'm not scared (well, most of the time). I've accepted this disease as a shifting of sands in our life and one that will only make my beautiful daughter in the long run a stronger, more incredible woman than she is already destined to be. I also believe it will (and has) make our family even closer .

This Thanksgiving I am so thankful for my husband, son Trey, parents, in-laws, sisters, friends and co-workers. I am also thankful to the many individuals who have contacted me whose child too suffers from this disease. I appreciate hearing their comments and sharing their life stories with us.

And of course, I am so thankful for Madeline. I am constantly amazed that a nine year old little girl can teach me so much. She teaches me with her steadfast attitude that she will "be done with this disease by the time she is 12" comments or her determination to dance for four hours even though her medicine makes her so tired. With this disease, I have learned so much from her. And that main lesson is Attitude.

Wednesday, November 26, 2008

Dried blood in toe nail

Many months back I wrote about Madeline having dried blood in her nails. This went away rather quickly and I've not thought about it any more. Several weeks ago Madeline mentioned for me to look at the spot on her big toe. I didn't think much of it. I thought maybe she'd hit her toe or dropped something on it or maybe it was the pressure from her pointe shoes. The dried blood under the toe nail is still there.

I know w/ JDM the nail beds are important to look at to see if you have active disease. But does that include the toe nails??? It would make sense, but I've only heard other parents talk about hand nails. Another question I'll have to ask the doc.

Monday, November 24, 2008

We're back...

We are back from Dallas. We got in late Sunday evening and all of us were exhausted. Madeline was sore, but for good reason. She danced three hours Friday, eight hours Saturday and five hours Sunday. They worked those little girls hard at dance camp. She had a great time and we did too.

We went shopping, of course, but we also went to an ice exhibit and ice skating. Madeline had a bad fall skating though and hurt both of her knees. She cried and cried and is still complaining her knees hurt. She fell straight down on her belly, hands, stomach and knees. She was soaking wet, poor thing.

I took a lot of pics of our weekend getaway and will have to post some of them soon.

Thursday, November 20, 2008

Texas, Texas, Yee-Haw

It's an exciting evening at our house. We are packing to go to Dallas for Madeline's dance convention. This is our third year to attend this dance camp and it is top notch. Her entire dance competition team attends. We also have some fun on the side by going to the Galleria to ice skate, a little (well okay a lot) shopping at Grapevine Mills and great restaurants. This year we also plan to go to American Girl. Madeline's had her eye on a doll so we need to go check this place out...I guess. $

I attended an event we sponsored at the hospital tonight called Blessings of Life. It's targeted to our oncology patients, but the service was one anyone could appreciate. The message was faith, hope and healing. It, of course, touched a nerve with me.

Oh - funny thing Madeline said tonight on our way home from dance. The leaves are finally beginning to fall around here. She said she hates seeing the leaves on the road because she keeps thinking I'm running over frogs. I didn't know what she was meaning, but then I realized the leaves blown by the wind look life frogs jumping across the road. She is so funny.

The kids are now out of school for the week. We look forward to a great Thanksgiving and a long weekend trip to Dallas.

Tuesday, November 18, 2008

Changed days for meds

We changed Madeline's chemotherapy treatment (methotraxate) to Saturday night instead of Friday night. Her medication really wipes her out and she sometimes has sleepovers, birthday parties, dance on Saturdays. It worked out really well this past weekend. She was able to rest all day Sunday. She actually had a neighbor friend come over that afternoon and they played until late in the evening.

She did have her competition dance team practice Saturday. We were able to go into the room to watch their routine at the end of practice. Madeline has one part in the routine that she has to pull up two girls from the floor. I could tell this was hard for her. Keep in mind she weighs around 70 lbs., is only 9 years old, is the youngest girl on the dance team (like two years younger) and she was pulling up girls somewhat larger than her. But in the back of my mind, I always wonder if it is something more.

Will that ever stop?

Sunday, November 16, 2008

Tooth Fairy Inflation

Madeline had a big day yesterday. She pulled her tooth out (well, actually her cousin Sarah pulled it out for her - yuck) and prepared for a visit from the tooth fairy. For some reason she believes that if you shine the tooth up real good, the tooth fairy will leave you a tip. Great! She has so many teeth loose right now. The tooth fairy is going to be really busy in the next few months.

She also had dance practice and a birthday party to go to on Saturday. She was not in the best of moods yesterday. She is battling yet another cold and maybe that was the problem. I noticed her face looking a little redder than it has been, but Rick tells me to calm down and not over react. We'll see. But, the redness on her face and moodiness concerns me. I know there is possibilities of set-backs....but I'm praying for her to be one of the lucky ones. Please say a little prayer for her too.

Thursday, November 13, 2008

Aching Heart

My heart is aching today. I follow the Cure JM site that is dedicated to children w/ myositis (JDM). On the blog today, I saw that one of the JM children had passed away. This young lady's blog was one of the first I read when Madeline was diagnosed. This just breaks my heart. I do not know this girl at all, but can somewhat comprehend the pain, love, concern and anguish she and her family dealt with for many years in regards to this disease.

Madeline is not near as ill as this young lady. At times, I feel guilty when chatting w/ other mothers or fathers whose children are much more ill.

But, I do count my blessings. With Thanksgiving just around the corner, we do have a lot to be thankful for.

But tonight I recognize that Heaven just welcomed a new Angel and my prayers of strength and love float to the parents of this sweet girl.

Tuesday, November 11, 2008

Another ear ache

Today is Veteran's Day - we salute all of you wonderful and brave veterans. We are a better country because of your sacrifices. Thank you.

The kids were off school today and the Courthouse was closed so Rick was home with them. Madeline was invited to go to see Madagascar 2 with a friend and had a good time. She said it was AWESEOME! But...she came home with an ear ache. She says it has hurt her all day so I will call the doc in the morning for an appointment.

I don't know how many ear aches she has had these past six months, but it seems like a lot. But if this is the worse we get - fine by me.

Monday, November 10, 2008


We had a GREAT time at the LSU vs. BAMA game Saturday. We have season tickets and normally go to every game. But this year we've sold many of our tickets. I am glad we went to this game. The day was beautiful. We found a lot of shade. And the atmosphere was awesome.
The game was great and ended up going into overtime. If only LSU had an experienced quarterback, I believe we would of won. Oh well! It was still a blast and tiger stadium was loud and so much fun.
Madeline had a good time except for a melt-down in the second quarter. She takes her methotraxate on Friday nights and normally this causes her to be very tired on Saturday. We did a lot of walking, riding, etc. She started crying and saying she did not feel good. Once I calmed her down and gave her a little mommy attention, she was better. I thought she was getting sick at first, but so glad to know it was just the tiredness kicking in.
Rick and I discussed changing her metho to Saturday nights. I think this will be a wise choice for all of us.

Thursday, November 6, 2008

When did she get JDM?

Still to this day I agonize on what caused Madeline to get JDM. With my type A personality, my mind ponders and ponders different situations which may of lead to this disease. One that comes quickly to mind is on our vacation summer of 2007 when I became ill with a virus. I was sicker than I'd been in a long time during that trip. I don't recall Madeline getting sick (very sick) like I was, but do recall she had the nose, cough going on. This was in June.

We ended up taking a second vacation that summer to Florida. We went mid - August. Madeline never burns and we always wore sunblock. But on this vacation she showed me that the skin was coming off her hands and feet. Not deep peeling, but more like dry skin exfoliating a lot. I didn't think very much about the skin, but now I wish I'd had.

My mommy gut tells me this was the beginning. It was three months later the redness on her face began. This was late November, early December.

I often wonder what would life for Madeline be today if we'd not gone to the Smokey Mountains. But then again, only God really knows.

Wednesday, November 5, 2008

A syte in her eye

Madeline woke up this morning with a stye in her eye. This is her first ever. I looked up today what a syte is exactly and here is what I found:

Styes are caused by staphylococcal bacteria. This bacterium is often found in the nose, and it's easily transferred to the eye by rubbing first your nose, then your eye.

Poor Madeline. I need to call her doc and get an ointment for the stye. Plus, I can't help but wonder if it could spread and with her weakened immune system we experience worse issues.

Of course, I picked at her and told her "you must of told a lie to have a stye." She responded quickly that she had not. I then had to explain to her what an old wise tale is. Speaking of wise tales...a co-worker told me to rub yellow gold on the stye. It's supposed to be the cure all of stye. I'm taking my ring off now. LOL

Tuesday, November 4, 2008

Halloween was fun. Each year we have our immediate and extended family members over for chili and a hay ride. Our neighborhood is very large and it's too darn hard to walk to each house which are on 2 acre lots.
Madeline was a beautiful witch and Trey was a dead pirate. I dressed as a biker babe, which did nothing for Rick. He thought I looked a little too masculine. Too funny.

The weather was perfect and Madeline never missed a beat. She ran non-stop and never tired until around 11 p.m. She actually fell asleep in her costume.

It's wonderful to see her energized and looking so healthy. What a treat.

Thursday, October 30, 2008

Good blood work results

Good news on blood work. AST was 24; reference is 0 -31 units/L; ALT was 10; reference 0 - 31 units/L. So glad her little body is handling these big drugs. Once less thing to worry about.

Madeline woke up with morning with her upper eyelid swollen. She has not had this happen since this past spring. There's always little reminders that her disease is still active.

Wednesday, October 29, 2008

Irritating pain

Madeline is still experiencing pain in her feet in the mornings. It breaks my heart for her especially since we don't know if it is the JDM or just growing pains. The unknown with this disease makes me so worrisome.

Each morning, while I do her hair, she wants to sit down or for me to hurry up and finish her hair. The pain is still explained as tingling -more like it is irritating to her. Yet, once she up for an hour or less, she is fine and running around like nothing is wrong. Ugh!

Monday, October 27, 2008

Field Trips and Fall

Madeline had a really good weekend. She was not tired at all and have a wonderful time with our cooler weather. Cooler weather in these neck of the woods means low 80s, high 70s. That is great for October. Fall is we just need the leaves to start turning. Maybe by Christmas. ;)

Madeline has a field trip tomorrow. They are going to a train station and then the park for a picnic. After dance this evening, I asked Madeline if she was excited about her field trip. She said of course but then said, "but momma, I've got to remember to bring my sunblock with me." It's amazing how mature she is about this disease. I am so proud of her.

Saturday, October 25, 2008

An inch a month..I hope not!

I mentioned in an earlier post that Madeline has had heel pain. Our son experienced this same pain when he had a quick growth spurt. Well...Friday morning Madeline came down to go to school and she mentioned her heel pain. We had just (actually on Sept. 20) measured the kids last month so I asked Madeline to come over and let's see if she'd grown any. And yes she had - exactly one inch in one month.

I can't believe she's grown an entire inch in a month. I would not even think that was possible. No wonder the poor baby's feet hurt. Oh, speaking of feet. She is now in a shoe size a 6 1/2. Her feet have grown as well. She was in a shoe size 5 at the beginning of the school year. And she is only 9 years old. Holy cow!

Geaux Tigers...beat the bulldogs!

Friday, October 24, 2008

No geaux to tigers game

We just got back from the hospital where Madeline had her bi-monthly blood draw. This is the first time that we had a little problem. She had a vein blow. It hurt her so badly. I thought for a moment she was going to either vomit or pass out. It really stung bad and I can already see the bruise coming. They then stuck her other arm and that went easy for her.

I've also decided that we are not going to go the LSU/Georgia game tomorrow. They moved the game time to 2:30 p.m. and I don't want her sitting in all that sunlight for four hours. I hate missing the game (you have no idea how bad), but we've come to far to let the sun get to her. Plus, she's always a little more sensitive to the sun the day after she takes her methotraxate. Her dad and brother are still going to the game and her aunt and uncle are going to use our seats. They'll have a great time. We'll just cheer from home and have a little girl time togetherness. Sounds good to me.

Wednesday, October 22, 2008

My mommy gut is telling me something

I've got a gut feeling that is making me a little nervous. Madeline has been doing very well. You wouldn't even notice looking at her she has anything going on such as JDM. But yesterday I noticed redness in her face. Her eyelids (like red eyeliner) has redness again. I've noticed this happens on and off, but it normally goes away. But this morning, while doing her hair, I noticed under her eye was once again that bright red like you've rubbed your face really hard redness. I'm going to give it one more day and see how she looks in the morning. If I notice the redness again, I may call her doctor. Am I overreacting?

We also bring Madeline Friday for her bloodwork. She's actually reminding me now that it is time to do her bloodwork. That girl constantly amazes me.

Monday, October 20, 2008

The worlds grumpiest cheerleader

Madeline went Saturday to a local schools cheerleading camp. I had not thought about her taking her methotraxate the Friday night before and how tired she would be at the camp. Boy was she a grump. She was in no way a happy, perky cheerleader. She was the exact opposite. I was almost embarrassed with how she was acting - rolling her eyes, body language. I had to address her about her behavior. Even if she is tired or not feeling well, she doesn't have to be rude. Tired and rude are two different words and actions. And I will not tolerate attitude.

We had a "come to Jesus" discussion and I believe she understood what I was talking about. Now, to see if she actually acts on our discussion.

Friday, October 17, 2008

Madeline's Quarterly Photo Documentary

In July, I began to document Madeline's "rash" photos so we could document quarterly photos with hopes of improvement each time. So, this is the second of the quarterly photo updates. To truly appreciate Madeline's improvement you must go back to the July 12 blog and compare then and now, what a change. But...she is very hairy as you can see on her arms.
One thing I notice in both quarterly photos - Madeline's chipped pink nail polish. Pink is definitely Madeline's signature color. :)

Thursday, October 16, 2008

Heel pain

Madeline is doing good this week. The only complaint she has is that one of her heels are bothering her. My first reaction was to freak out, but then Rick reminded me that she is really growing a lot (height) right now and that our son Trey at this same age complained often about heel pain. In fact, at one point he would tiptoe from the pain for it hurt too bad to put his foot completely down. Of course he has not experienced this pain in a long while, so maybe this is what is going on w/ Miss Madeline.

Rick has calmed my fears (for now).

Sunday, October 12, 2008

Update of doctor's appointment

I know I am late posting Madeline's doctor appointment update. We have just been very busy between school, dance, sports, projects, work and life in general.

The visit w/ Dr. W was great. He was very, very pleased with her skin. In fact, he said if I didn't know she even had JDM, I would not even know looking w/ the naked eye. She still has a few spots on her elbows and around her nailbeds. Her knees are clear, chest is clear, as well as her face. He then tested muscle strength...strong as a ox! Not surprised with that, but oh so very relived.

We then let him know what we are experiencing, the tingling legs in the mornings, letting him know about her recent illnesses. I also brought the picture I posted on this blog of her odd bumps on her face that were straight in a line. He had no answer for that one - odd. He didn't think the JDM was causing the tingling in the legs, but possibly it was the medications. He told us to continue to watch this. He reminded us to have our blood work done (which is due in a couple of weeks). He did say do not worry about the cyclosporine serum level checks since last time we did this the results showed less absorption after the increase of meds (plus, she is doing better than ever).

He had just come back from a conference in London and mentioned the key to JDM is what we all know aggressive treatment. Therefore, he wants her to stay with her drug cocktail for now. Fine by me and her dad. We are in no hurry to stop this process that is going in the right direction. He wrote us scripts and we were on our way.

For consistency purposes, Madeline weighed 83.4 lbs. (that's almost 10 lbs. in three months), her height was 57 3/4 inches (and she is only 9), temp was 98.3, blood pressure was 119/76, and her heart rate was 74. She has really grown so much these past three months. I read somewhere one time that this disease can stunt growth...not happening here.

I am so thankful how well Madeline is doing. I will take quarterly photos (like last time) documenting her rash this week. Otherwise, another trip to Texas in January.

Monday, October 6, 2008

Squirrel gumbo anyone? Pics included...

In case you don't know...that's an alligator snapping turtle.

We had an eventful weekend. We are from Louisiana and our culture is somewhat different from other areas of the country. With that said...we went squirrel hunting/camping this weekend. It's opening season (always the first Saturday in October, if you ever wanted to know) and a family tradition for all of the grandparents, aunts, uncles and cousins to head to the woods.

The kids had a blast. They rode four wheelers, go carts, fished, hunted, walked in the woods and looked for critters. Then, Saturday night after the big hunt, squirrel gumbo was prepared and everyone ate. We also celebrated (belated due to the hurricane) my dad's 70th birthday.

I know what many of you are thinking....redneck, I understand. :) But it's really about family togetherness and tradition which is so strong in this neck of the woods.

We leave for Madeline's checkup in Texas tomorrow. Say a little prayer for us.

Thursday, October 2, 2008

Doctor appointment in Texas coming up...

Madeline completed her antibiotics and is doing much better, but she still has a cough. I did finally make contact w/ our physician in Houston and we are on for our appointment next week. I don't look forward to the drive, but do look forward to asking another plethora of questions. :)

I feel like our appointment should yield good results for I feel Madeline is doing better than ever. Keep your fingers crossed.

Tuesday, September 30, 2008

Also Touch...

So often people do not understand the severity of Madeline's disease. Luckily, she is responding very well to her meds. I feel good on her progress and am optimistic about her future. But then my bubble gets busted…This morning, I read on a blog about others who are not so lucky and I can't help but worry if this could happen to our baby. My heart breaks for this family.

Blog submission...
At today's checkpoint, while eating our chocolate and peanut butter, we finally had a chance to ask some members of Team "Also Touch" what exactly their team was. They have these cool jerseys with a big red heart that says"Also Touch" in the center, a Spongebob Squarepants on one sleeve and the photos of a young girl on the other. There are about a dozen of them, all ages, mostly men, and all of their bikes (a range of high end road bikes to a recumbant) all had a stuffed Spongebob pinned to their seatbag. Well, Bart, a young guy from Northern Cal explained to us that he met Dwight, another Northern Cal rider, on the ride last year and when Dwight decided he wanted to actually form a team for 2008, Bart and several others joined him. In 2005, Dwight's daughter, Christiana, passed away from Juvenile Dermatomyositis at the age of 10. He is doing this ride and raising money in her honer and the others on the team are either friends from home or people he met on the ride. "Also Touch" comes from her diary. She was very religious and the her diary entries often referenced verses from the Bible and her thanks to God for everyone who supports her and prays for her. She sounds like she was an amazing young woman. The last entry she ever wrote was "..and please God, also touch" and then it stopped. She didn't get to complete the entry before she passed away. So Dwight has named the team "Also Touch". Her favorite character was Spongebob which is why they all have Spongebobs on their bikes and jerseys. It is a sad, beautiful and inspiring story. They are a great team out there. Even though most of them look like they could finish each day in about 4 hours, they take their time enjoying the sights and local establishments, and eat together at the end of the night with plenty of "recovery" beer and wine. How do I know this? Because they often let me cool our own beer in their coolers. Thanks Also Touch!

Monday, September 29, 2008

I'm not having a good day

I'm having a bad day. I don't know if it's a Monday pity party or what, but I'm just down. I really shouldn't be though. Madeline is really doing well. We have adjusted to her new lifestyle okay. And she doesn't really have the emotional personality issues any longer. I'm just sad...or maybe mad.

I hate that she will not be able to go to camp in the summer, that she will not get to lay out with her friends by the pool and get that ever so desired tan every teenage girl wants. I hate anytime she spends the night with someone I have to go over and give her her medication. I hate we have to miss school and work to travel to her doctor's appointment in Texas. I hate having to wonder each day if she is going to not be able to get out of bed or walk when we wake her in the morning. I hate worrying if she is going to catch a virus she can't get over. I hate the worry of what these drugs are doing to her body. Will she be able to have children? Will she ever go in remission? Will we always have to live on pins and needles?

Okay...guess I'm mad. I hate this...I wish I could go back in time and just stay there. It would be easier.

Friday, September 26, 2008

Alot of pills

We just finished taking all of Madeline's meds - a total of eight pills right now. I hate giving her all of these drugs, but in the same breath thank God for modern medicine. She is complaining that her ribs are hurting, but I believe this is due to all of her coughing. I too would be sore if I coughed as much as she is doing.

We just got back from our local high school football game. It was a rough one with a very, very large loss. Kids had fun though, as well as we did. Thanks goodness it's the weekend - we all need a rest.

Thursday, September 25, 2008

Bumps on face

I've attached the photo of Madeline's bumps on her face which I mentioned in my last post. Isn't this odd how they are in a perfect line? It almost appears as if something crawled down and took a little nibble along the way.

Any ideas?

Wednesday, September 24, 2008

My daughter is ravenous

Madeline's medicine is kicking in well. She is coughing her head off, but the congestion is loosening up which is a good thing. Madeline was prescribed a four day stint of prednisone and it's been interesting seeing how ravenous this medication has made her. Prednisone is the common first line drug for JDM and so many parents have to deal/manage its side effect of weight gain. I can see how that is an issue. Madeline has only had two doses and she can't eat enough.

Madeline has the oddest bumps on her face right now. I will snap a of picture of it and put it on tomorrow. It is five bumps in a perfect line. And when I say perfect line, I mean exact line. Weird.

Monday, September 22, 2008

I'm a bad mother...

Madeline had a rough night last night. She woke up crying with a bad ear ache.

I brought Madeline to see our ENT - Dr. W (not to be confused w/ our rheumatologist). Poor thing, her ear is very infected and bulging. Dr. W was shocked she was not in more pain. She also has a sinus infection, throat, chest...well you get the idea. I also learned a new lesson. Dr. W said with Madeline's condition if she does not improve in five days to call him immediately for an appointment. With her suppressed immune system she does not need to wait so long for a prescription of an antibiotic. I feel like a terrible mother.

She was given mucinex D, cefdinir 300 mg twice a day and prednisone 20 mg one a day for four days. That should do the trick...I hope.

The trooper she is Madeline still went to pointe tonight. We then went to watch Trey and Daddy at football practice. I hope she sleeps better tonight. She obviously has a high pain tolerance.

Sunday, September 21, 2008

Ear ache

Madeline's upper respiratory issues are back. She is now complaining of an ear ache. I will call our ENT in the a.m. to make her an appointment. She looks great though and seems to be feeling well too.

We have our upcoming doctor's appointment scheduled October 9, which is just around the corner. I tried calling our doc (which is in Houston), but no one answered. I will try again for I am concerned that their Beaumont satellite office experienced hurricane damage. That area of Texas and south Louisiana was hit hard by Ike.

She had dance on Saturday and was not very tired at all. She seems to rarely complain of her tiredness these days. Great news.

Friday, September 19, 2008

Doesn't she look good?

I found this on my camera last night - Madeline clicking her self portrait. She looks great. I know she is not in remission, but she is getting better each day. I not only see it, but feel it in my gut.

Tuesday, September 16, 2008

Is she experiencing neuropathy?

Madeline has taken a turn for the better in regards to her cold - wonderful. But, this morning she experienced her legs feeling funny again. She's done this on and off since beginning her treatment. She only complains of this odd, tickling feeling (as she explains it) in the mornings.

It's always when I am ready to do her hair. She comes to my bathroom and sits by the jacuzzi and rubs her feet. She says they feel funny, tickle, then have a burning feel to them. My first thought is's the JDM ready to attack. But, this morning it hit me that my dad has the same problems, but for him it's neuropathy.

I looked up Madeline's medication side effects tonight and I've attached what it says about cyclosporine. What did we do before Google??? Seems to me - the cyclosporine is the culprit.

Cyclopsorine side effects:
The most common and potentially serious side effects are high blood pressure and kidney problems. Both problems are more likely to occur in elderly people who take this medication. Approximately a quarter of patients taking cyclosporine for rheumatoid arthritis develop mild to moderate high blood pressure. Approximately half of patients develop mild kidney problems while on this medication, and may need to adjust their dosage or discontinue the medication. Kidney function usually improves after stopping the medication. Because this medication affects the kidney, cyclosporine can cause gout in some individuals or worsen underlying gout in others. Other commonly experienced side effects include headaches, nausea, vomiting, abdominal pain or dyspepsia, and swelling of the hands or feet. In addition, approximately 10 percent of patients taking cyclosporine may develop tremors, increased hair growth, muscle cramps, or numbness and tingling of the hands or feet (known as neuropathy). Some patients taking cyclosporine develop swelling of the gums. Brushing and flossing regularly may help to prevent this.

Sunday, September 14, 2008

I plan to call the doc...

Madeline is still not quite herself. Her cold is lingering and she has a nasty, deep cough. I think she needs to get a chest x-ray. I will call her doctor in Houston tomorrow to see what he thinks. Well, I hope I can get in touch with him since Ike ransacked Houston. Will keep you posted.

Saturday, September 13, 2008

We still have electricity!

We've made it without losing electricity - Hallelujah! Others around us did not. Hopefully they will be back up with service soon.

Madeline's had somewhat of an emotional day. She's not had a day like this since spring. It was a crying, tired, very irritable kind of day. I sometimes wonder if I am reading too much into it or if it's just her growing up (hormones do crazy things). Then, I also thought she just had a rash and we all know how that went. It may be her lingering cold making her not feel well. Oh, now her dad has it. He feels terrible. I guess we'll all get to experience these cooties.

Friday, September 12, 2008

Chest cold and Hurricane Ike

Madeline is feeling better today. She still has a stuffy nose and congestion in her chest, but her mood and tiredness has improved.

We are dealing with another hurricane - Ike. We are not directly in the track but located east of the eye. As I type, it is pouring outside and the wind is whipping around. We are glued to the Weather Channel and Fox News watching the sadness of this storm in areas we are so familiar with. We are also worried about our doctor who lives in Houston. I hope he and his family left.

We are concerned about flooding in our area. Several days after Gustav, our community felt the effects with flooding. Our bayous, rivers, and ground are saturated with rain water. More rain may mean more trees falling over when they become top heavy from the wet ground.

I don't know if we will lose electricity again. Please pray this storm is not as rough for us, but especially for those on the coasts of Texas and Louisiana.

I've got to get Madeline her methotraxate and cyclosporine. Good night.

Thursday, September 11, 2008

It's in her chest

Madeline sounds terrible. The cold has not entered her chest. She is not running fever, so I am refraining from having a panic attack. Of course, it did not help when I heard on TV this morning about a new super bug. I've got to stop watching the news.

Madeline is very tired. I've had a hard time getting her up and going these past two days. Luckily, the weekend is almost here.

Gosh, I hope she gets over this quickly.

Tuesday, September 9, 2008

And she has a cold...

During Gustav, the kids were out of school for the entire week. They started back yesterday and Madeline came home with a nasty cold. I've dreaded this since school started, and we are only in week three. Here we go. I know I'm going to become obsessed with watching to see if it gets into her lungs - my biggest fear.

As for her skin and the other effects of JDM- she is doing wonderful. We are all a little tired still from living out of a box and not having electricity. But thank God Ike is not coming our way. I don't wish that on anyone, but we really could not of handled another storm like the last.

Saturday, September 6, 2008

Five days of Gustav

Where to begin...I guess at the beginning.

Monday - My last blog was on the day of the hurricane. I had planned to write daily on what was going on in the area, but was so busy I never had a chance. I stayed at the hospital until around 6 p.m. when I decided to ride out the storm at home. I planned to just go back the next morning or be called out during the night, if needed. The wind and rain was impressive. When Gustav hit our area, it was a category 1 hurricane. We watched the hurricane action curiously until dark. The trees bent with the wind and the rain poured with a bullet force. My in-laws, sister-in-law and five dogs moved into our home during the hurricane. And then...our lights went out. I had started cooking chicken and sausage gumbo and Rick brought it quickly outside to finish cooking on the pit (there's more to that story I will tell later). Then, the trees began to fall. I don't know if tornadoes were making the trees fall or if it was the wind. But they fell, everywhere in our neighborhood.

The kids and my in-laws began playing a card game to pass the time and ease nerves. It worked. I paced and paced. I hated not begin able to see what may or may not happen. We finally decided to go to bed. We opened the windows for air, but all there really was was humidity beyond breathable. House alarms went off all night and the wind blew and rain poured constantly. We slept on top of the beds since it was so hot. Around this time, I wished I had stayed at the hospital.

Tuesday - The day after the hurricane Rick and I got up early to evaluate the damage. The yard was a mess. We lost some trees, but none I was too upset about. All of my magnolias were fine - thank goodness. The house was fine. We were fine. But - no electricity. I then went into work and got dressed in my office. I had a full day with media, command center, staff issues, etc. I think I worked until late in the evening. Rick and the kids decided to move up to the hospital with me since we had cable, food, A/C, etc. The news informed us it was going to be a while before we had electricity again. We had a hard time sleeping at the hospital, but at least we were not sweating bullets. It rained a lot during the night.

Wednesday - I was awaken at 6 a.m. when my cell phone rang and it was the hospital letting me know they had activated Plan D (disaster plan). The hospital was flooding. We had received almost 5 - 7 inches of rain through the night and many areas of our city, specifically downtown, was flooding. Another long, long day. I had a lot of media, employee communications, hand-on work to do on this day. I don't even remember when I stopped working. We had to move an entire floor of the hospital into our main hospital - not an easy feat, but was accomplished. The ER was nuts. People were getting really hot, shelter people were brought in constantly and the staff was exhausted and worrying about their homes. At this point, I had not bathed in several days and looked/felt disgusting. One of my employees who had the luxury of electricity invited us to come over and bath. It was wonderful. Boy, the simple things in life are the best. While washing Madeline's hair, she mentioned to me that the skin on her feet are sluffing off again. She did this with both her hands and feet before the face rash began on her around this time last year. I told her we needed to watch this. I panicked inside a little.

Thursday - We slept better, probably from pure exhaustion. The kids were being so good during this entire event. And Rick was so wonderful taking care of them since I was working constantly. Rick even helped out at the hospital delivering food trays to our 276 patients. We were low on all of our staff due to the hurricane and flooding so we were doing a little bit of everything. We still had no electricity so planned to stay again at the hospital. No one else in my family had electricity either. That evening, we decided to go to Sam's to buy a generator. We had already lost all of our food in the two refrigerators at home and decided we would not do that again. When we got to Sam's I asked Trey to call his friend to see if we had electricity. We DID! Praise the Lord! We hauled butt to the hospital to pick up our items and went quickly home. When I walked into the house, I SMELLED SMOKE. Looking around briskly I saw the source - the stove. I had washed some dishes and laid a beach towel over the area with all of the dishes thinking once the electricity was back I would put them in the dishwasher. All of the items were burnt and black. When we lost our electricity I was cooking gumbo. Rick took the gumbo and in all the commotion I forgot to turn off the stove. When we gained electricity, it heated up and began to burn. Thank God we came home when we did. 30 minutes later the house surely would of been on fire. I then tried to get my parents to come over. They are in their 70's, but refused to come home with us. Hardheaded. We went home took baths and went to bed - life is good. OH - it was our 15th wedding anniversary, how romantic, huh? :)

Friday - I woke up exhausted, but slowly got up and went to work - another full day. We went to the grocery store to buy milk, eggs, etc., but there is none to be found. They are handing out ice, dry ice and MREs, but we don't feel righting getting any since we are fortunate to have electricity, so many don't still.

Saturday - I think we are getting back to normal. Most of my family now have electricity. Grocery stores are getting produce, milk in...yea, we have eggs. I am still so exhausted. I plan to rest as much as I can...for now. We watched the weather channel and see another hurricane coming our's name is Ike.

I hate's not been a good year. I can't wait for it to be OVER!

Monday, September 1, 2008

I'm at the hospital

Well, today's the day. I didn't sleep much last night for I had to pack to stay at the hospital through the duration of the storm. I'm nervous leaving Rick and the kids. I know Rick will take perfect care of them, but being separated is tough. I hope lines of communication stay open so I can speak to them through the duration.
We've been hit hard with patients at the hospital - NICU, PICU, ICU diversion. The ER is packed and we have a medical needs shelter located next door to us. Since we are this busy now, I can only guess how nuts it will be come tomorrow. For those of you who do not know, I am a vice president at a hospital. My main responsibilities include public relations, marketing and business development. I'm also the hospital spokesperson. I started doing media interviews and sending releases yesterday. In situations like this, I also do whatever else is necessary.
I plan to take pics through the "event" to post online. I should have computer access here since we at the hospital have back up generators. Wish us luck!

Saturday, August 30, 2008

Gustav is scaring me

Okay, I'm nervous. We are right in the path of Gustav. I'll come back to that in a minute, first Madeline.

Dr. W and I played phone tag the second half of last week. We finally spoke Friday. I dreaded this conversation since I knew he would want to increase meds since her serum level was actually lower than last month. Sidebar here to update you: Madeline's last cyclosporine serum level was 141. It needed to be higher. We doubled the dose and were to follow-up in a month with another serum level testing. We did and this time it was in the 90's. Okay, with that out of the way...I was confused that her level was lower, so was he. I could hear in his voice we will need to....but then I told him how good Madeline is doing. Her skin is better than ever, strength good, flexibility so much better. He then said good - let's stay the course. I was so happy and feel this is the right choice. If I didn't see improvement, I'd increase her dose, but she is doing great.

Now back to the new bad thing in our life - Gustav. I am normally pretty calm on hurricanes, but this is a big one and it scares me. The Governor just had a press conference announcing Gustav is expected to be worse than Katrina. I can't imagine. Gustav is now classified a category 4 expected to become a category 5 tonight. Our town has now been listed as an impact area so the normal folks from the coast that come to us for shelters are being bypassed from our area to go further north. I believe the wording locally authorities used.. "we need to take care of ourselves". OK.

We are told that where we live to expect category level 2 or 3 winds (up to 110 mph). I have washed every dirty clothes/towels in our house today, went grocery shopping again (which you can't find water, bread, canned goods any longer) and had conference calls with work since I will probaly have to live there during this event. We will pick up items in the yard tomorrow to ensure nothing can fly. We have a lot of furniture around our pool to put up as well as porch swimgs, potted plants, etc. We'll also cleans gutters and make sure the cars are filled with gas (stations are running out around here).

I will make another post tomorrow, but do not know when/if I'll get to post for a while after Big Gus passes. Just depends on the electricity situation and any other potential issues. I don't wish this hurricane on anyone else, but I sure wish it wasn't aimed straight for us.

Thursday, August 28, 2008

We have a visitor coming...named Gustav

Well, looks like we are going to have company soon. Gustav should make his way here Tuesday. For those of you who do not watch the news (or live in another country), that's a tropical storm that should be a category 3 hurricane come Monday. Living in Louisiana, we are always dealing with these storms during hurricane season. It is rather eerie though Gus in coming on the anniversary of Katrina.

We went grocery shopping, stocked up on batteries, found all the flashlights and counted the candles. Rick went to get propane gas today for the grill and both of us need to fill up our cars since the stations are beginning to run out around here. I think we are prepared. I think...

Wish us good thoughts and especially to our friends closer to the gulf.

Wednesday, August 27, 2008

Don't panic

I had a minor panic attack this morning while getting ready for work. I was doing Madeline's hair and she was very agitated and grumpy. She kept sitting down by the jacuzzi - up, down, up, down. I didn't know what she was doing. I finally asked her what was wrong. She said her legs were hurting her. I looked at them and they were so red. PANIC!

After I took a deep breath I told her let's put some lotion on them. After I did that, she said they were better. Huh? Go figure??? Now I'm worrying about this. What is going on? I can't help but wonder about the parents who said that the bad muscle effects began once the rash was better. Worry, worry, worry. I'm trying not to think too much into this, but then again how do you not!

I'll just have to keep watching and going w/ the mommy gut. If she says it again in the morning, I'm calling Dr. W.

Tuesday, August 26, 2008

Little baffled

I'm a little baffled. We increased Madeline's cyclsporine intake last month after seeing her serum level was only at 141. Dr. W asked for us to redo the serum level test in a month to see the increase. I picked up the results this morning and her serum level has actually decreased to 97.5. I'm confused. I'm anxious for Dr. W to call me and let me know his thoughts on this. I do not want to increase the meds, as you can understand. Plus, she looks and is feeling so good right now.

As for her ALT and AST - all in normal range. And her urinalysis was clear - all good news.

Sunday, August 24, 2008

The Truth

Madeline asked me the question that I dreaded her to ask me one day - "What would of happened if they never found out what was wrong with me?". My jaw dropped. Then she asked, "What will happen if I stop taking my medicine?". My heart then skipped a beat. Why was she asking this? Has she been pondering these questions? Does she not want to take her meds? Does she think we are hiding something? My mind is racing.

We had a long talk. I told Madeline the truth and the whole truth. She has the right to know, I guess (I hope I did the right thing). I explained to her about the children who one day wake up and can't get out of bed or the child who has troubles swallowing, etc. She looked shocked. I kept telling her how lucky we were that a wonderful doctor figured out what was going on with her so quickly. Her response to that..."Momma, that's because I have so many Angels in Heaven watching out for me."

My cup runneth over.

Saturday, August 23, 2008

How is she not exhausted? I am!

Busy Saturday...Madeline spent the night at a friends, Trey is in a travel baseball tournament (locally), Madeline had dance competition team practice, Madeline went to a swimming birthday party, Trey went to the movies w/ friends, Madeline, Rick and I went shopping. I'm exhausted just typing this.

Madeline held up well though. She tool her cyclo/methro combo last night. She is handling the drugs beautifully lately.

Now it's time for a bath and bed...and I'm speaking about me.

Friday, August 22, 2008

Just got back from the hospital...

We just got back from the hospital. Madeline had her blood drawn for serum level checks and her liver enzyme tests. She was once again a trooper. She is so calm and confident for a nine year old. I told Rick I would never of been as cool and calm as she is. She is far beyond her age.

She is still looking and feeling really good. I expect good results from her blood tests. I'll post the results on Monday.

Wednesday, August 20, 2008

The Poison is Working

Madeline is looking good. And when I mean good, I really mean fantastic. The skin on her chest is completely cleared. Just a few months ago, I was worried the scaly rash on her chest would scar her forever. Don't have to worry any longer - it's perfect. Her knees - clear of rash. Face - clear of rash. And her worst part, the elbows - at least a 60 percent improvement. Her hands are at least 60 percent improved as well.

I don't want to jinx us by getting too anxious with her vast improvements, but she has come so far in actually a short amount of time. Boy, are we blessed.

The increase in her cyclosporine really worked for her. The "poison", as I called it in the beginning, is the "magic" doing the job on the JDM. Thank God she never took the prednisone. Our doctor went with second line drugs to avoid the side effects of the prednisone. Some may disagree with this course of treatment. But I believe our doctor is a genius.

Tuesday, August 19, 2008

How blessed we are

Madeline had pointe last night. She did beautifully, of course. She's also doing so good in school. I just burst at times thinking about what an incredible little 9 year old she is. How blessed Rick and I are to have her...and Trey.

Speaking of Trey...he is doing great in jr. high football. In fact, the coach asked the team for a volunteer to step up and be the first one to hit an 8th grader. Trey volunteered to be first. The coach kudo'd him and he was fired up. Now, Trey tells us this 8th grader was 6 feet tall, but he may of exaggerated somewhat. Any-hoo, Trey knocked that boy on his rear and surprised everyone, especially the player. He was not happy with Trey and when they tackled again, he knocked Trey about three feet in the ground. But, Trey was PROUD. That boy is too funny. :)

Speaking of football...we got our LSU season tickets in - Yee-Haw! We can't wait to get into Tiger Stadium...nothing better on a Saturday night. Go Tigers!

Sunday, August 17, 2008

Sacrament of the Sick

It's Sunday and Madeline served as an altar server at church this morning. She always enjoys altar serving at church. She feels very grown up and feels like she is closer to God.

Right before the service began, it hit me...why had we not had Madeline added to the church prayer list or had the sacrament of the sick provided to her. Our actions (or lack of) at times shock me so much. I can't help but wonder if it is the same thing that was going on just two months ago -denial. I need to snap out of it.

I told Rick to go see the priest and request after church the sacrament and off he went. When mass was over, we went with Father into the confessional area. The bad thing - Madeline had no idea what we were doing. The look on her face was "what did I do?". I guess we messed up there by not letting her know that we requested a prayer for her. She did fine though. I asked her how she felt after and she told me when he put the oil on her forehead, her whole body got warm. That brought a smile to all of our faces.

Saturday, August 16, 2008

Neighborhood Coincidence

Trey made the football team. We are so proud. This is his first time to tryout for a team. Otherwise, he's only played on teams like travel, Dixie League or Youth League Football. Great job, Trey...we love you.

Madeline is still doing very good. In fact, we took her metho/cyclo combo last night and she even woke up early this Saturday morning. That's not her norm.

I had an interesting conversation yesterday evening when picking up Trey from practice. Another mom, who happens to live in our neighborhood, was updating me on her daughter's illness. She is six and had rheumatic fever this past spring (around the same time of Madeline's diagnosis). She was asking about Madeline, too, and when I began explaining to her the "rash" her mouth dropped. She explained that her son had a rash on his joints, knees, wrist, elbows, etc. He first started out with this rash and then her daughter had the same similar rash come up before the additional illness progressed. Her daughter ended up being transferred to New Orleans Children's Hospital and is doing great now. She is still on meds. Both her son and daughter were on prednisone. It just makes me wonder...just like she did...was it something in the water, dirt???? You can't help but wonder. Very odd coincidences.

Today is my birthday (me and Madonna, and not the virgin). The kids are wrapping my gifts as I type. The gift wrapping should turn out interesting. We have plans this evening, but otherwise it's been a nice quiet day. Happy Birthday to ME! :)

Wednesday, August 13, 2008

Sleep to Sniffles

Okay, I'm tired tonight. I've stayed up too late for too many nights watching the Olympics. The kids (and of course Rick) have enjoyed the games too. I don't know if I can handle several more weeks of this...

Madeline had another great day. In fact, she received a token for getting caught in the act of doing something good. The assistant principal noticed Madeline picking up some dropped items in the cafeteria. I know, YUCK. After telling her how proud of her I was, the next thing I asked was did you wash your hands afterwards. She did and picked up the items with a napkin. Thank goodness, but still...yuck... and the germs she does not need. But, I am very proud of her.

She's got a little sniffle going on right now...will watch and listen to that closely. Keep your fingers crossed.

Oh...Trey made the first cut for football tryouts. He did round two of tryouts today, so we should know if he makes it tomorrow.

Tuesday, August 12, 2008

Serum level checks

It's time for Madeline to go back for serum level checks. She's now been on the increased cyclosporine for almost a month. My, how time flies. She is still having days with very dark circles around her eyes, but her skin looks really, really good. Her elbows are even looking so much better. I guess the increase really made the difference. I'm sure in another month, we should see the full effects. As for fatigue, muscle, etc....not seeing anything along these lines at this time. Thank God.

It's also time for Madeline to have the complete blood work up (and peeing in the cup, ha) completed again. I don't think it would make a big deal, but I'm going to push her serum check back a week since it is almost time to do those tests as well. No need to stick that baby more times than necessary.

School is going good. We bought each teacher the biggest bottle of hand sanitizer Sam's sales. I told them to let me know when they run low and I'd replace....anything I can do to keep the germs away.

Trey had football tryouts at the Jr. High. I'm sure he did well. He is excited and hopeful.

Monday, August 11, 2008

It's raining on the first day of school - yea!

It's the first day of school and overcast and raining...thank you God, I don't have to panic about Madeline being in the sun. I am so excited for Madeline's first day of school (and Trey, he started Junior High), but also very nervous hoping the teachers give Madeline a little more attention. Also, hoping they communicate with me throughout the year on how she is doing emotionally, as well. I feel like it's going to be a good year though. All four of the teachers took the time to learn more about Madeline and her needs. Plus, Trey had most of these teachers already and I know they are very dedicated to their kids.

Both Trey & Madeline had a hard time going asleep last night. I admittedly did too. I couldn't help but think about those great memories when I was their age and dreaming of all the possibilities the year may bring. I hope each of their dreams become reality for them. I know they deserve it.

Thursday, August 7, 2008

Open House/Sample Teacher Letter

We have open house tomorrow for Madeline's school. She is so excited and has already picked out what she is going to wear. One of the things Rick and I will do tomorrow is discuss with each of her teachers Madeline's disease. I've also attached a follow-up letter that I will give to her teachers, principal, school nurse, and PE Teachers. I found this sample letter on the curejm site and thought it had good bones to build off, but of course I changed it to fit our life. If anyone would like to "cut and paste" and make it their own for their school year, by all means help yourself.

I'm not real sure how Madeline will feel about this. She truly does not see herself begin "sick". I hope it doesn't embarrass her. Any's the letter...

August 8, 2008

Dear Fourth Grade Teachers:

I wanted this letter to serve as a follow-up to our conversation regarding our daughter, Madeline XXXXX. Madeline is currently battling a very rare disease called Juvenile Dermatomyositis, or as she calls it JDM. She was diagnosed on March 28, 2008 at 9 years of age.

JDM is a rare autoimmune disease which attacks children of all ages, causing them to suffer from weakened and painful muscles, skin rash that worsens with sun exposure, severe fatigue, digestive problems and a variety of other debilitating symptoms. This disease is very rare as it only affects between 3,000 to 5,000 children currently in the United States. As to date, we have only found one other person in the state of Louisiana battling this illness. Some children may experience a remission, while others will battle JDM their entire life. Madeline is only four months into treatment, so remission is far away for us.

In Madeline’s case, her muscles are currently in good shape but she suffers from the skin issues. Madeline’s treatment currently involves taking Cyclosporine A (a medication normally used for transplant patients) and methotraxate ( a chemotherapy drug). Combined with her medicine, it is absolutely necessary to keep her out of the sun. JDM is peculiar in that although Madeline may look good now, having her in the sun unprotected can cause big problems. This is due to her disease, as well as the side effects of her medication.

My husband, Rick, and I request the following guidelines be followed concerning Madeline’s activities while attending class at XXXXXXX Elementary:

  1. Madeline is very sensitive to the sun as a result of her dermatomyositis/medications. As a general rule, it is important that she avoid unprotected sun exposure during the times of the day when the sun is at its peak (10:00AM – 4:00 PM). We are aware that Madeline can tolerate minimum sun exposure in the late fall and winter months with proper protection. It is imperative that Madeline wears sunscreen at all times. If I feel Madeline should not be outside due to a flare or extremely high Ultra-Violet Index (UV Index) I will advise you and the school via a note whether Madeline is or is not permitted to participate in outdoor recess. Her friend, Emily XXXXXX, stayed indoors with her last year when she could not go out for recess. This really helped Madeline a lot, mentally and emotionally. I have spoken with Emily’s mother, and she is okay with Emily doing this again for Madeline.
  2. Madeline will need to put on sunscreen before recess (if I allow her to go out), and any time before she goes outdoors. Please allow her to go to the bathroom or hallway so she may apply the sun block in privacy. It is necessary to have her sunscreen applied to her face and all exposed areas. Madeline should re-apply sunscreen to her hands prior to dismissal. I will supply the sunscreen for her to keep in her backpack or your location of choice.
  3. As a matter of safety, Madeline should participate in all fire drills. Reasonable attempts (such as standing in shaded areas) should be made to protect her during these times. Ultimately, however, she needs to understand the importance of getting out of a burning building and disregard any material items, sun-protective or not.
  4. Madeline may participate in gym class, in fact exercise is very important for maintaining her muscle strength. My understanding is that from time to time gym class is conducted outdoors. In general, Madeline is permitted to participate in outdoor gym class, but must apply sunscreen prior to going outdoors. I will notify you (see #1) on those days when Madeline is NOT permitted outside for gym class.
  5. Madeline is taking methotrexate, which is an immunosuppressant medication that puts her at increased risk of infection. It is important that I am notified if there are serious infections in the school. Also, she will need to wash her hands and desk more often and will carry hand sanitizer with her at all times. I will also purchase hand sanitizer for your classrooms if that will help you. I can not stress enough the importance of this. What can be a simple cold for you or me, can become serious for Madeline.
  6. Madeline must visit various physicians throughout the school year which are located in Texas at Texas Children’s Hospital. She may tend to be ill more often. These events will require that she is absent, late or dismissed early. I will keep in touch with you when these events occur in order to coordinate her schoolwork.

Juvenile Dermatomyositis can be a physical illness but does not impact Madeline’s ability to think, feel and participate. You will find that Madeline is like any other child her age in all other respects. She is competitive, somewhat of an over-achiever, a dreamer and a very well-rounded little girl. I am very interested in her mental health as it relates to her disease and ask that you inform me should you detect any concerns in her emotional well being. I value your expertise and welcome your assistance should a concern arise.

One way you can learn more about Madeline’s experiences with this very rare disease is by visiting her blog at She loves to tell you about her pen pals literally from around the world, in which, she has made from this site. Plus, it will help give you an idea of the path we have taken in these short four months.

Thank you so much for taking the time to attend to this matter. I look forward to the new school year, as does Madeline, and developing a new partnership with each of you.


Wednesday, August 6, 2008

Girls looking great

Both of the girls (Madeline and Lulu) are looking so much better. Lulu is 90 percent back to herself and Madeline's rash is back to her new normal. It was interesting to see how this extra stress on Madeline really made her facial rash glow.

The only thing still lingering is Madeline's dark eyes. I thought she may be getting sick, but so far so good. Guess these shiners are going to hang around for a while.

Tuesday, August 5, 2008

Stress does cause problems

I've read that stress can cause JDM to increase/flare. Well, I am here to say that must be a very true statement. This weekend Madeline's sweet puppy, Lulu, had a toxic reaction due to something (we still have no idea what it was) she digested. Sunday morning I noticed Lulu was not acting right and shaking. I thought maybe she did not feel well, but then noticed her progressively getting worse. We brought her quickly to the vet emergency room. Boy, was she sick!
We left her there to be watched, flushed w/ fluids, etc. At 2 p.m., the vet called to let us know Lulu had coded and had to be placed on a vent. She did begin to breathe again on her own and her heart rate improved. We got to bring her home last night, but she has a long way to go. They do not suspect brain damage and I have no idea how they know that, but is good news.
Madeline has been understandably very upset. Her facial rash has looked very good until yesterday morning. She is more red than she has been in months. It has to be the stress. The comment she made that just broke my heart was....."Momma, why do bad things keep happening to me?".
Lulu HAS to get better.

Sunday, August 3, 2008

Sometimes you forget she is sick...and then you are reminded

Madeline took her methotraxate/cyclosporine Friday night and slept in until around 11 a.m. Saturday. She had one of her best friends spend the night with her and when the girls finally came down Madeline looked terrible. I don't mean in the red rash/fatigue since - it was the pale, dark/sunk in eyes, pasty look to her. Maybe my eye was drawn to her look and color since she and her friend were sitting next to each other and Emily has a colorful tan and full,healthy face. Or, is Madeline coming down with something?

She was also hot to touch. She does this often (there has to be some link to JDM and the hot flash feels she is experiencing) and I am constantly saying let's take your temperature....and she never has fever. Another note is when she is having a "red day" I will ask her how she is feeling and she answers me fine. I then get the look from her like why do you keep asking me that you crazy lady. I worry. She'll understand one day.

You sometimes forget Madeline is even sick, especially since she is so active, energetic and overall a happy child. But it's days like this that saddens me and reminds me how she is different from other children. You get reminded that she is sick and what I can't see from the outside happening to her, plenty is going on in her poor little body.

I hate this disease!

Friday, August 1, 2008

8 months and counting

I have an obsession counting down the months since Madeline showed her first sign of JDM. That just so happened to be Dec. 1. A medical professional mentioned to me recently that she can still experience the muscle effects up to two years after her first sign of the "rash". We have now reached the 8 month mark...only 16 more to go. Okay, I feel nauseous.

It's actually a little surprising that 8 months have gone by, but then I am reminded that she has only been on her meds for four months - the longest, hardest, saddest, most difficult four months in our lives. But we are pretty much getting back to normal (no more breakdowns, well maybe a tear or two once a week). We are now used to taking the meds, staying out of the peak sun, wearing sunblock if necessary and not obsessing over every complaint or boo-boo Madeline mentions to us.

From the moment we learned about Madeline's diagnosis, we've asked the question "Why?". I still don't know the answer to this question, but do believe we will learn it one day. I'm just glad I don't ask the why question any longer in a depressed, angry state. I now am anxious to learn the answer.

Yes, in eight months we've come a long way.

Thursday, July 31, 2008

School starts in 11 days

I can't believe the first day of school is in 11 days. Madeline is very excited and in fact already has her backpack ready to go. I wish I was as enthusiastic. Our parent/teacher meetings are next Thursday which makes me dread having to go through the whole story again about Madeline and her JDM. I hope we get a teacher who "gets it" and understands how important it is for her to communicate with us what is going on emotionally w/ Madeline as well as understanding the importance of sun protection. I also dread all of the "germs" she will encounter and what illnesses Madeline may acquire since her meds suppressive her immune system. Actually, I'm horrified of what she may get.

All we can do is use hand sanitizer, pray, swab neosporin in her nostrils, pray some more and hope there are no serious illnesses at our school. Either way, fourth we come.

And speaking of horrified...Trey starts Junior High...SCARY!

Tuesday, July 29, 2008

Updated pics of Madeline's JDM rash

I brought Madeline shopping Sunday. This is how she looked w/ her new foundation to hide the "redness". It looked great and better yet is in a powder form and has built in sunscreen. Yea!

Elbows look somewhat better. This is still her area of most difficulty. Also, notice the abundance of hair..ugh.

This is a before we put the makeup on. She still looks so much better. Below is a better picture showing her improvement on the face.

Her knees change daily. She shaved the night before and this seems to bring out the bumps and redness.

Her blister is finally disappearing. Only took FOUR MONTHS! She really needs a manincure. :)

Her hands took better, except for the tips closest to the nailbeds.

New Years Eve 2007

New Years Eve 2007
Her rash on New Year Eve 2007. We were treating at this time as poison ivy.

Madeline, January 2008

Madeline, January 2008
Here is a picture of Madeline (2008) at her classroom birthday party. Here you will notice her malar rash and grottron's papules on her hands. Of course at this time we had no idea what was going on.

Madeline, January 2009

Madeline, January 2009
Here is a picture of Madeline at her 9th birthday party. The only redness you see now is the nornal redness from running around at your birthday party. My, what a difference a year makes.