Madeline's Blog Archive
- 8 months and counting
- Sometimes you forget she is sick...and then you ar...
- Stress does cause problems
- Girls looking great
- Open House/Sample Teacher Letter
- It's raining on the first day of school - yea!
- Serum level checks
- Sleep to Sniffles
- Neighborhood Coincidence
- Sacrament of the Sick
- How blessed we are
- The Poison is Working
- Just got back from the hospital...
- How is she not exhausted? I am!
- The Truth
- Little baffled
- Don't panic
- We have a visitor coming...named Gustav
- Gustav is scaring me
- ▼ August (19)
- ► 2009 (104)
- ► 2010 (61)
Saturday, August 30, 2008
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
Wednesday, August 27, 2008
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
As for her ALT and AST - all in normal range. And her urinalysis was clear - all good news.
Sunday, August 24, 2008
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
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
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
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
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
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
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
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
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
Thursday, August 7, 2008
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:
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
Wednesday, August 6, 2008
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
Sunday, August 3, 2008
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
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.