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Sunday, July 1

I got up early for my morning walk. I actually completed 100 laps of the walking/jogging track on Deck 7 this week, a total of 25 miles of walking. Today, I caught a nice sunrise, and I also caught our arrival into Boston harbor. We were about 15 miles out when I started, and I immediately saw a harbor partol tugboat. It looked like our ride home was almost over!

We made nice time into our dock, arriving a little after 6:00 AM. I went and brought the girls some breakfast, then we prepared to get off the ship. They called us promptly at 8:30; we gathered our bags on shore, and we went to wait for our limo. We ended up getting home a lot sooner than we expected.

Overall, this was a great vacation. Julia got quite a suntan, despite all the sunscreen, but never burned. She was fully active and kept up with a very busy schedule all week. This was very gratifying to see!

We sorted through our mail and newspapers, unpacked our dirty laundry and started a couple of loads. Then we went out for some lunch and a movie. We saw the film A.I. (imdb, metacritic) This is an amazing, thought-provoking movie with some excellent acting performances.

Monday, July 2

Our vacation continues here at home until the 4th of July, the U.S. Independance Day. It looks like we're going to be doing movies this week. Today, we went to see Pearl Harbor (imdb, metacritic). This 3-hour movie has some incredible action sequences, but is about an hour too long.

Julia is way too used to staying up late. She's having trouble when she doesn't sleep late, and can't fall asleep at night at her regular bed time. The next few days will hopefully be chance for her to readjust to a normal schedule.

Tuesday, July 3

Today's movie of the day was Evolution (imdb, metacritic). This was an alien invasion movie. A few funny moments, but completely predictable. If you haven't seen it already, don't bother - wait for the rental store.

Wednesday, July 4

This is the 4th of July, Independance Day in the United States. Like so many holidays, the meaning behind it is often and easily lost in the hype and marketing and activities. If you haven't done so lately, please take a few minutes to read out loud the Declaration of Independance. It is very moving and meaningful.

We did decide to attend yet another movie on this, the last day of our vacation. It is the opening day for the movie Cats and Dogs (imdb, metacritic), so we decided to take it in despite a lukewarm review of the movie in the newspaper. Ugh. I hated this movie (would easily have walked out if I were alone), Julia's mom only tolerated it, and Julia didn't even like it (SPOILER (drag your mouse over the following text to see it): because the cats lost). Oh well, the movies got steadily worse as the week progressed!

Friday, July 6

This was not a banner day. Julia was at her sitter's house and decided to go swimming. We have been having a problem with her being lazy about chores and other things around the house, and with her sunscreen. Well, today she spent over an hour in the pool, and she definitely was lazy about her sunscreen. She got a pretty bad sunburn on her face, upper arms, and shoulders. She said she put on sunscreen before she went out, but the results speak for themselves.

The last time she got burned this badly, in the summer of 1998, she had a flare. We were all concerned about it, and had a very tension-filled dinner out that was not enjoyable for anyone. After we got home, there was a pretty serious shouting match, and Julia got read the riot act about her laziness.

We are all hoping and praying that Julia's JDMS is truly dormant and that this will not turn out to be a problem. She is going in for blood work tomorrow, as it happens, so we will know soon enough, perhaps Monday or Tuesday, if this has affected her adversely.

Saturday, July 7

Took a ride into Boston for blood work. They had us waiting for a while - this sometimes happens when you go in off-hours.

Julia's sunburn is not looking as bad as it did last night. It's still obvious, but it is clearing up fast. It's probably because she has a pretty decent tan base to her skin.

Test Date Aldolase CK LDH AST ALT vW F8
1/18/00 6.5 72 247 23 20 168
2/29/00 6.0 74 230 24 32 190
3/18/00 5.2 54 213 25 25 148
4/18/00 3.7 50 190 22 13 145
6/6/00 5.6 67 204 23 21 148
7/8/00 6.0 72 248 28 25 170
8/5/00 70.4 77 219 33 32 137
9/2/00 7.2 77 227 27 26 98
10/7/00 6.2 80 201 23 22 133
11/4/00 5.0 83 213 30 27 137
1/9/01 9.8 78 197 26 24 101
2/3/01 4.7 73 212 28 24 91
3/3/01 4.6 84 211 28 26 123
3/31/01 5.2 98 209 26 21 141
5/1/01 4.8 93 219 26 21 105
6/2/01 4.8 88 186 23 15 106
7/7/01 5.1 115 211 33 35 Not Yet
Normal Range: 3.0-16.0 4-150 110-295 10-34 6-30 160

Monday, July 9

Julia was complaining today that not one, but two of her teeth were bothering her. One is a tooth that's been loose for months, but just hasn't wanted to let go. Now, the adult tooth is poking out from underneath it. The other is newly loose, but it seems to have a death grip on her gumline. Both teeth are on her upper row of teeth.

We called the dentist, and they couldn't take her today, but we made an appointment for tomorrow. Julia hates to go to the dentist, and she asked if she still had to go if she pulled those teeth out. We said no.

Well, before dinner, she managed to work out the loose one. It bled a little, but stopped quickly. She then went to work on the other one. It took her a couple of hours, but sure enough, she pulled that one out, too! This second tooth had a large, sharp edge under her gums, like a hook - no wonder it hurt, and it was so hard to get out. It bled for quite a while. Julia is pretty amazing when she's properly motivated.

We called and cancelled her dentist appointment.

Tuesday, July 10

For a special added bonus, Julia had an appointment today with her regular pediatrician, Dr. L. It's been a year since we saw him last, and he likes to keep up with her progress. They took a height (53.5", up half an inch since May), a weight (85.1 lb, up 2 lb, which is not bad considering the Cruise), and a blood pressure (92/70).

After a bit of a wait, Dr. L. came in with a 3rd year medical student, A.P. We have seen a lot of med students at Children's Hospital, so this was no problem at all. She was left in charge of getting a history and doing a basic exam.

She first commented on the large size of Julia's medical chart. That naturally led to an explanation of JDMS. She had heard of it in adults, having recently completed a turn at rheumatology, but not in kids. We went through the whole story, and she seemed gratified to hear it. Julia did an excellent job explaining everything, and we just filled in a few details.

She then went through some boilerplate questions on the exam form, mostly about safety, activities, and nutrition.

After the history was taken, she did a quick physical exam. She checked the eyes, ears, and mouth. We also pointed out the Gottron's Sign (nailbed abnormalities and knuckles). One bonus we hadn't seen before was a screening for scoliosis. She checked for any curvature in Julia's spine, and any imbalance in her hips or shoulders. No problem.

The med student left and after a while came back with Dr. L. He chatted about some of the stuff Julia is into, and repeated some of the physical exam. He mentioned that Julia will not need any immunizations until she's going into 7th grade, in 2 years. It looks like all the immunizations she'll need then will be the type that are safe to give even if Julia is still on Prednisone then.

That about wrapped it up. I have to say that the med student did an excellent job with both taking Julia's history and the physical exam. I gave her this web site address, so if she's reading this, "Hi!".

Wednesday, July 11

Dr. A.W. was delayed in getting us the lab results until today because of her school schedule. The raw numbers are: CK 115, LDH 211, AST 33, ALT 35, Aldolase 5.1, Albumin 4.2, white blood cells 5.0, Hematocrit 38.7, Platelets 424, and von Willebrands still pending. All are still normal, except ALT is slightly above normal. However, given that the numbers are up and the ALT is above normal, we're going to hold the meds at the same level for now, to be conservative.

This situation led to a tense evening at home. Everyone was upset by the less-than-encouraging numbers we got today. On the up side, Julia's rash does not seem to be any worse, and she is not showing any outward clinical symptoms. After the first time she got a sunburn 3 years ago, it was immediately obvious that her rash was worse right away. Hopefully, this is a good sign.

Thursday, July 12

We had a priest friend who was visiting us tonight give Julia the Sacrament of the Sick. It was just the four of us, a very private and intimate sharing. We also have all our friends praying for Julia.

Friday, July 13

We now have some official word on Myositis Day. For those of you not aware of it, Myositis Day (September 21, 2001) has been recognized by an official proclamation by the State of Massachusetts. The details have not yet been finalized, but there will be a ceremony to receive the proclamation in Boston on that day.

In conjunction with Myositis Day, there will be a walk-a-thon held, beginning and ending in Harvard, MA (not "Harvard University"!) on the following day, Saturday, September 22nd. Click here for the official web site for the Walk.

You can get involved! If you live in the northeast US, circle that date, September 22nd, on your calendar and plan a day trip to the Walk. If you can come but you can't walk, there are plenty of jobs available for volunteers. Here is the online signup form for walkers and volunteers.

If you can't be at the Walk, then you can still help by sponsoring a walker! All you need to do is fill out a contribution form, and get pledges from family, friends, neighbors, coworkers, etc. All the proceeds will go to the Myositis Association of America. Just visit this web site, and print the page on your computer. Print as many copies as you need.

I hope that everyone can help out with this event!

Tuesday, July 17

Today was our every-other-month visit to Children's Hospital. It was largely uneventful. Dr. A.W. immediately commented about how great Julia's rash looks. She's right! Julia does look awesome. Even her cuticles look great - all the rough skin there has sloughed itself off in the past week or two.

Dr. A.W. and Dr. S. tried to be very reassuring about the sunburn. They said that sun exposure can affect the rash, but there is no conclusive evidence that it can affect the muscles. It may in some kids, but doesn't seem to in most. Also, since apparently Julia's rash was not even affected by her sunburn, it's very unlikely that it will affect her systemically. Still, we're going to wait until after next month's numbers before we decrease her meds, just to be safe.

They also checked Julia's strength. She is completely normal - full strength in all her muscles, even her neck muscles. Great stuff!

After the exam, we went to the cafeteria in the hospital. It was very nice! It was pleasantly decorated, quiet, and spacious, plus there was a wide variety of food available and it was relatively inexpensive. If you have to go to Children's, give them a try.

Friday, July 20

During Julia's keyboard lesson late this afternoon, she got sick. Beforehand, she complained that her stomach hurt, but it didn't seem too bad. At some point, she had to leave her lesson and go to vomit.

This was a bit complicated. Julia had invited a school friend of hers to sleep over at our house tonight. Julia & her mom were going to pick up the friend after keyboard, then we would all meet for dinner out somewhere. Luckily, after getting sick, she felt better and we were able to go ahead with our plans for the evening.

After dinner, Julia and her friend hung out and played, and watched movies until midnight. They had a great time! I'm sure they will do something like this again before school starts up again.

Saturday, July 21

Julia felt fine this morning. She and her friend had pancakes for breakfast. I had to work today, but the girls and Julia's mom went shopping and then went to the friend's house. Julia played and went swimming all afternoon (using plenty of sunscreen!) and had another great time.

Saturday, July 28

We went off to see the movie Planet of the Apes (imdb, metacritic). Very dark and heavy handed, but entertaining.

Tuesday, July 31

We got a phone call tonight from the RN involved in the JDMS Registry study that Julia is part of. They are apparently doing a new study involving some patients in the registry, plus others who were diagnosed with JDMS earlier, some as many as 40 years ago.

The new study involves identifying patients with a certain genetic factor. They are looking for a certain TNF (Tumor Necrosis Factor) allele, but she didn't specify which one. The theory they are testing is that patients with this factor are more likely to have more relapses (flares) and worse outcomes (long-term problems into adulthood).

They will be sending us a consent form in the mail, along with a kit to gather some cells from the inside of the mouth for DNA testing. She assured us that there will be no general DNA testing, just a search for this particular factor. She also said that she will call back next week to conduct an interview to see how Julia is doing now, and what her highest dose of each medication she has taken over the course of her disease. (I looked this last up - 40mg/day Prednisone (20mg 2X per day), 35mg/week Methotrexate, 200mg/day Plaquenil, 100mg/day Quinacrine, Folic Acid 1mg/day 6 days a week, Tagamet 800mg/day).

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Updated August 1, 2001
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