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Friday, June 2

We had a line of severe thunderstorms rumble through our area tonight. Julia has always has trouble sleeping during storms, and this was no exception. Even after the storms passed, she couldn't sleep and was up until midnight. It's a good think this isn't a school night, but she's going to have trouble getting to sleep tomorrow night after sleeping late tomorrow morning; ditto for Sunday, and that is a school night.

Sunday, June 4

Julia did stay up later last night and slept later this morning, and again couldn't get to sleep in the evening. Actually, we were visiting friends and she might've had trouble falling alseep anyway.

At dinner tonight, Julia was thirsty (she complained about her throat being dry) and she quickly drank 2 glasses of apple juice. Well, a few minutes later, she started looking green around the gills and shortly thereafter she vomited. She was miserable while she was throwing up, but felt completely fine afterwards. She had a similar episode several years ago (pre-JDMS) where she drank 2 glasses of chocolate milk at a restaurant and the same thing happened.

Tuesday, June 6

Julia had an appointment at Children's today. After we got done with the blood lab (they kept us waiting for over half an hour because they ran out of collection vials :-( ), it went very well. Julia has actually lost another pound and her height is the same. Her temp and BP are normal.

As usual, Dr. A.W. saw Julia first. She just chatted for a few minutes, and we spent some time talking about our vacation to Disney World last month. Then she launched into the questions and tests. She covered all the ground very well, as usual. Julia continues to be at full strength, and her rash is looking great - it's like she doesn't even have a rash. If you didn't know to look for it, you wouldn't notice it.

Dr. A.W. told us that she's going to be staying on at Children's for at least another couple of years. This is great news! We had been worried that her fellowship was going to run out and she was going to have to move elsewhere. She's been wonderful to have on our team, and we're very pleased to hear she'll be with us for a long time to come.

Dr. S. came in and did his clinical exam with the usual strength tests, and he seemed very pleased. He asked if Julia was still seeing an eye doctor regularly (she actually has an eye exam scheduled for next week), because Quinacrine may also cause vision abnormalities, much like Plaquenil can.

We then discussed the plan. If Julia's White Blood Count is still back to normal (high doses of Methotrexate can depress it), then we want to start reducing Julia's Prednisone at the rate of 1mg/day each month until we get to 3-4mg/day. This assumes that we get her labs done each month and that things are staying in the normal range. This is what we've been waiting to hear - getting Julia below that critical dose of about 8mg/day (for her body weight) will get rid of the rest of Prednisone's nasty side effects.

11/16/99 Test: 8.3 113 273 30 27
12/14/99 Test: 6.3 88 249 24 21
1/18/00 Test: 6.5 72 247 23 20
2/29/00 Test: 6.0 74 230 24 32
3/18/00 Test: 5.2 54 213 25 25
4/18/00 Test: 3.7 50 190 22 13
6/6/00 Test: 5.6 67 204 23 21
Normal Range: 3.0-16.0 4-150 110-295 10-34 6-30

Friday, June 9

Dr. A.W. emailed us the early lab test results on Wednesday, but we never got them. They apparently went into email limbo for some reason. I wrote her today and she forwarded them to us - and they are still good! Several of the numbers are up, but everything is still in the normal range, which is the goal. Julia's Aldolase was, in fact, getting to be a bit too low, near the very bottom of the normal range; it looks better this month. In addition to the table above: Albumin 4.1, White Blood Count 6.11, Hematocrit 37.9, Platelets 381, Sedimentation Rate 9. If von Willebrands looks OK, we're going to drop the Prednisone from 9 to 8 mg/day as soon as we get the word.

Saturday, June 10

This is Julia's annual dance recital day. Just like last year, it's a very hot day, and they are performing their show twice, a 2:00PM and 5:00PM. We were remembering last year's recital and how different things were for Julia.

Julia did fantastically well. She's been practicing her steps all the time in the past several weeks, and it shows. She definitely knew all her steps, and I think (no bias, naturally) that she was the best dancer in her group. Despite the oppressive heat, Julia and the rest of the dancers held up very well and it was a very fun show.

Monday, June 12

Julia is having trouble falling asleep because of a cough, again, both last night and tonight. Had to give her a cough pill and prop her head up on pillows so she could get to sleep.

Tuesday, June 13

Today is Julia's last day of school. They haven't really done any real school work for almost a week as it is. Her report card is outstanding! Straight A's across the board. We're so very proud of her.

Thursday, June 15

We got an email from Dr. A.W. late last evening, and the news is great - her von Willebrand's test was 148, essentially the same as the 145 last time. That means we can reduce Julia's Prednisone by 1 mg to 8mg/day.

Current Drug Dose: Prednisone: 8mg/day Quinacrine: 100mg/day Folic Acid: 1mg/day Calcium: 900mg/day Methotrexate: 25mg/week

Saturday, June 17

Julia was complaining about her big toe hurting. Sure enough, she had a sore, red spot about the size of a dime on the top right of her left big toe.

It's a case of good news/bad news. The bad news is it's because her sneakers don't fit. The good news is it's because her feet are growing again! I'm not suggesting that Julia has outgrown her sneakers in 3 days, but this is the first time we've had to replace her sneakers for a reason besides them wearing out since her diagnosis.

Sunday, June 18

Happy Father's Day! This was a pretty laid-back day for me, which is a good thing. Julia and her mom each give me hand made (rubber stamped) cards for the occasion, both of which I love. We had my father-in-law over for burgers on the grill. I even had time to read the Sunday newspsper.

Monday, June 19

Aside from all her other wonderful qualities (beautiful, smart, hard-working, etc.), Julia is also generous. Several months ago, we saw an article in the local paper about Locks of Love, an organization that collects donated hair and manufacturers it into wigs for kids that have lost theirs due to disease or treatment for it. Julia decided she wanted to donate her hair to the cause.

The group requires hair to be at least 10 inches long, and Julia's wasn't quite long enough back then. Well, it's been growing over the months, and it's long enough now that she can give about 11 inches and still have enough left to be almost shoulder length.

We went to the salon today and collected her hair. It was quite dramatic, watching all that hair come off all at once. After cutting off the ponytail, she got a shampoo and a cut to make it all even. We're so very proud of her for wanting to do this, and for making the commitment to actually do it.

I think the results speak for themselves! Julia looks so much older with the cut - it's really very striking. Move your mouse over the images below for a bigger image. If that doesn't work, just click on the caption text instead.



After #1

After #2

After #3

Sunday, June 25

We had a barbecue at our local parish today, followed by seeing the movie Chicken Run. The movie is a hoot, and the claymation is amazing.

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Updated July 8, 2000
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