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Saturday, September 1

Another month, another blood test. This is a particularly difficult day to drive into Boston. It's moving day for thousands of students, plus there is a Red Sox game in the early afternoon. We did hit some traffic on the way in, but it was tolerable. On the way out, inbound traffic was backed up for several miles!

Test Date Aldolase CK LDH AST ALT vW F8
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 35 147
8/4/01 4.2 90 218 25 12 123
9/1/01 4.6 80 194 24 16 105
Normal Range: 3.0-16.0 4-150 110-295 10-34 6-30 160

Monday, September 3

It's Labor Day in the US, a holiday for all workers, and the unofficial end of the summer season. The weather this weekend has been beautiful, and we spent a fair amount of time outdoors.

We got an email from Dr. A.W. with Julia's first blood test results: CK 80, LDH 194, AST 24, ALT 16, white blood cells 5.95, hematocrit 37.1, platelets 430, and sedimentation rate 7. All are normal. We are waiting on Aldolase and von Willebrands. These are great numbers! We are very pleased.

Tuesday, September 4

Today is Julia's last day of summer vacation! I think she's very ready for school to start. Her new backpack is all ready to go, her summer reading is done (she read 50 chapter books this summer, each with a book report!!), and she even gave me a menu of what she wanted for lunch. She was so nervous / excited about school that she had a stomach ache. She went to bed at 8:30 sharp, which she hasn't done for months.

Wednesday, September 5

This is Julia's first day of 5th grade! it's hard to believe how fast she seems to be growing up. She was ready way early, and we waited with her for the bus to come and pick her up. She has a new teacher, one she knows nothing about, but her class this year has almost all her friends in it - it's almost as if she hand-picked the roster.

She ended up having a great first day. We got a big packet of papers to read, sign, and return, and she even got a little homework (a few vocabulary words to study).

Thursday, September 6

Dr. A.W. emailed us this morning with the von Willebrands number (105) and the Aldolase number (4.6), and they are both great. She said we can reduce Methotrexate to 7.5mg (3 tablets) per week. Julia had already taken her meds before we got the email, so we'll start next week.

Tuesday, September 11

This will go down as one of the darkest days in American history. I do not want to dwell on the events of today; there are many other places for such information. I just want to share our experience with it.

I heard about it just before 9:00AM, reading a web site forum. Someone from NYC posted saying that a plane crashed into WTC1. I immediately jumped to some news web sites and the awful news was confirmed, followed soon by more and more awful news. Julia just heard bits a pieces throughout the day at school. They did not close school early or take any other extraordinary measures.

I happened by coincidence to already have an appointment to donate at a blood drive at work. I donated, as did 90 of my co-workers, double the expected number at the drive. Many had to be turned away; there just wasn't enough time to process all the willing donors.

Like most people, we got home in the evening and watched everything on TV. There are no words that can explain those images away. We talked about our feelings - the shock, disbelief, horror and sadness. We prayed for the victims, their families, and the rescuers. We came away numb.

Thursday, September 13

Current Drug Dose: Prednisone: 3mg/day Folic Acid: 1mg/day Calcium: 900mg/day Methotrexate: 7.5mg/week

Friday, September 14

Julia had trouble falling alseep again tonight, for about the 3rd or 4th time this week. We try to get her to bed at the usual time, but she can't fall asleep and is up pretty late. We think it may be that she sometimes has a snack after supper, and it's usually something sweet. We will try cutting out the snack, or maybe changing it to something with no sugar in it and see of that helps.

Saturday, September 15

We had a checkup appointment scheduled for Julia for next Tuesday, but Dr. A.W. emailed us a few weeks ago and mentioned that there were some Saturday clinic hours available, and would we like to come then instead? I couldn't call them to reschedule fast enough!! Having the appointment on a Saturday works well for us on a lot of fronts - Julia doesn't have to leave school early, I don't have to leave work early, traffic and parking are much less of a hassle, and Julia's mom doesn't have to miss coming along because of her school commitment.

The appointment was at Children's, but in a different clinic than we usually use. It was easy to find, though their computers were "down" and we had to wait a while past our scheduled appointment time to sign in.

After a nurse took most of Julia's vital signs (87.6lbs/39.7kg, 53"/135.8cm, 111/60; no temperature taken, oddly), Dr. A.W. came in. She was there by herself and she honestly seemed very relaxed compared to our usual Tuesday visits. We attributed this to being seen forst thing in the morning, on a Saturday yet, with no (or fewer) phone calls to make and pagers the answer.

She administered her usual clinical exam, and asked all the usual questions. After checking Julia's strength, she said "This is the best she's even been," "There's not a hint of weakness," and "Her strength is completely normal." Wow! Since our last visit, Julia's rash looks a lot better, too. Her cuticles have cleared themselves up and look nearly normal. Her eyelids are also clearing up, and it still looks like just a hint of eye shadow. Very encouraging.

We agreed to continue monthly blood testing and continuing the same track to drug tapering. At this rate, she'll be off of everything in 6 months or so.

Sunday, September 16

After church, we zipped out to spend the day at King Richards Faire, a Renaissance Fair held each autumn in Carver, MA. It's always pretty much the same, but it's a lot of fun. We saw jugglers and fire eaters, the Singing Executioners, and visited the Museum of Torture. They have jousting, and new this year was a display and show of some big cats. They have fun foods to eat (mom had a turkey leg, and Julia had "chowda" in a bread boule), and lots of period costumes being worn. It was a stunningly beautiful day, and we had a very good time.

At bedtime, Julia complained about a sore throat. We thought that her throat was just irritated from being around the dusty conditions all day. We gave her a cold glass of water to drink, and she was able to get to sleep.

Monday, September 17

Julia had more than a dry throat last night. She woke up this morning with a sore throat, and some congestion. She was also sneezing occasionally. She seemed a lot better as the morngin progressed, and went to school without incident.

At the end of the day, however, she started feeling bad again, and hse sniffles had progressed to a minor cough as well. Apparently, the symptoms came and went during the day. She couldn't fall asleep until we gave her an ibuprofen to ease the sore throat pain.

Tuesday, September 18

Julia seemed a little better during the day today, but again at bedtime she was up with that sore throat and coughing. This time, we gave her a cough pill as well as an ibuprofen, and after they took effect, and got to sleep.

Wednesday, September 19

Julia's cold is much better today - basically, no more symptoms and she didn't need any meds to get to sleep. This is good news - stuff like this would tend to linger for days back when she was on a higher dose of Prednisone and Methotrexate. This is like the old days (before she had JDMS) when almost nothing would bother her for more than a couple of days.

Friday, September 21

Happy Myositis Day!

This is a report on the wonderful Myositis Awareness Day ceremony that took place this morning. The ceremony was held in the beautiful Nurses' Hall in the Massachusetts State House in Boston. The Mistress of Ceremonies was Sister Jon Julie Sullivan, who did a fine job of introducing the festivities, explaining about Myositis, and introducing the speakers.

The first speaker was Dr. Howard K. Koh, Commissioner of the Massachusetts Department of Public Health. He spoke about Myositis and how it affects people. Finally, he read the proclamation from the Governor, and presented it to Earl Klein, Chairman of the Board of Directors of the Myositis Association of America

Earl accepted the proclamation, and spoke a few words thanking all those who helped make Myositis Day a reality, and talked about the mission of the MAA. Then, he introduced Janice Goodell, who had the idea to create Myositis Day and ran with it to make it happen. Janice, whose adult daughter has Dermatomyositis, spoke about how much help she had in bringing the concept into reality.

The last speaker was Annemarie Silver. Her sister has Polymyositis and she spoke very well about the difficulty that Myositis patients face, how they are unable to do simple things that the rest of us take for granted. She also mentioned that her sister is being treated with IVIg, and is responding well so far. She emphasized the need for more research, and patient assistance. It was a very heartfelt speech, and one that everyone could relate to.

After the ceremony, there were refreshments provided, and introductions made all around. Several people knew Julia on sight, and almost everyone who met her said something to the effect that they felt like they already knew her, from reading this Diary. It was a wonderful ceremony, and we all had a good time.

Click here to see pictures from this ceremony

Saturday, September 22

Today is the day of the first-ever (and hopefully first annual) Myositis Day Walk-A-Thon. Julia had dance rehersal late in the morning, then we picked her up, grabbed some lunch, and headed out to the Walk. The weather was absolutely glorious! A better day could not have been custom ordered - it was sunny and warm, a stunningly beautiful first day of autumn. As Janice, the Walk organizer, said, "It wouldn't dare rain!"

The walk was held in Harvard, MA (not to be confused with Harvard University) at the Bromfield School. It's a beautiful school and grounds, and the walk began and ended there. We got there in time to register and drop off the money we collected from family, friends, neighbors, and co-workers. Thanks to everyone who contributed to support Julia, to help make this event a huge success, and to help fight Myositis!

Before the event, we had some time to grab a snack and drink (all supplies were donated by local sponsor companies). We also met and chatted with several people who had come out to walk, to volunteer, or to cheer the walkers on. To a person, everyone was friendly and cheerful and enjoying the day and the company.

The Walk stepped off promptly at 1:00, although several people arrived late. There were over 100 walkers (I have not heard a final exact count). The Walk itself winded through some lovely wooded residential neighborhoods and was mostly shaded. The shade was a blessing, as it kept the walkers cool. There were also plenty of water breaks along the way, so it was easy to keep cool and stay hydrated. The three of us availed ourselves of the water often.

We set out in a big pack of walkers, but we let Julia set the pace. Her pace was a very quick one and soon we were ahead of all but the runners and a handful of others. The course was mostly level or uphill most of the first 3 miles, and was mostly downhill the last 2 miles. Julia showed amazing strength and stamina throughout, and a fierce determination to be the first kid to finish.

Julia did it! Five Miles!! She was all red and sweaty by about mile 4, but she was utterly determined to finish, and she actually ran most of the last mile, since it was mostly downhill. Even more amazing is that we completed the 5 miles in 1:20, which is a pace of 16 minute miles. Julia absolutely could not have done this 3 years ago, or 2 years ago, or one year ago, or probably even 6 months ago. Her effort today was truly heroic and inspirational.

After we finished the walk, we relaxed in the shade and cheered the other walkers as they completed the course. There were many amazing stories among those walkers, too. There were even people who didn't even know anyone with Myositis who heard about the walk and just wanted to participate and help out. It was tremendoulsy uplifting to watch the walkers as they returned to the school.

There was plenty of time to socialize afterwards. We met many of the people from the State House ceremony, plus dozens of others. Several people flattered me by coming up to me and asking, "Are you Ralph Becker?" and thanking me for creating and maintaining this Diary. You're welcome everyone! There were also a lot of people who wanted to meet Julia after hearing and reading so much about her. She was very polite and gracious.

As the afternoon wound down, they held a raffle and then served pizza. We relaxed on the lawn and took pictures and talked with people. What a great event! Next year's date has already been set, so be sure to circle Saturday, September 21, 2002 and make it a point to be there!

Julia was understandably tired and fell asleep on the ride home. After we got home, she felt sore in her legs and hips and we gave her an ibuprofen to help with that. At the very end of the day, I got an email indicating that the walk had already raised over $27,000, plus other money that was pledged and corporate matching gifts that will push the total to over $30,000. WOW!! What a wonderful day.

Click here to see pictures from the walk

Sunday, September 23

Julia was quite sore this morning, walking around the kitchen like a little old lady. I think she was exaggerating a little, but the soreness is to be expected. We went off to church , then Julia spent the day at a friend's house. Her friend recently had hip surgery, and is confined to a wheelchair for a couple of months. The two had a fun day together.

Thursday, September 27

I got an email today indicating that the final total on the Walk-A-Thon is over $40,000! This is great. We also got a couple of late donations for Julia's participation, and her total was almost $1,200. Thanks to everyone who contributed to make this event an enormous success. We are already looking forward to next year's walk!

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Updated October 4, 2001
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