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.

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.

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.

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.

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.

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.

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.

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.

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!

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.

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! :)

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.

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.

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.

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 hoo..here'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 www.madelinesjdmstory.blogspot.com. 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.

Sincerely,

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.

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.

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!

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.