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Friday, June 1

Julia delivered her social studies oral report on Pennsylvania, and it went very well, she said. We should get a grade back next week some time.

Saturday, June 2

I took Julia to Boston for her blood work this morning. It went very uneventfully, despite it being a chilly and rainy day. After the blood draw, we stopped by our old stomping ground the CAT/CR and dropped off a few old videos that Julia isn't interested in watching any more. The staff is always appreciative of them, and we remember how they made the hours go by faster when Julia had her infusions.

We decided to take in a movie today, and the movie of choice was Shrek. It was hard to get in though! We arrived a bit before 2:00 for a 2:25 or 2:50 show, but they were sold out, and the film was showing on 4 screens! We got tickets for the 3:45 show, then went and did a bit of shopping to kill the time. The movie was excellent! This is a don't-miss movie. It's a fairly predictable plot, but the characters are wonderful, the animation is stunning, and the details are covered well. We all laughed a lot at this movie.

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
Normal Range: 3.0-16.0 4-150 110-295 10-34 6-30 160

Sunday, June 3

Julia sings in the choir at church on the first Sunday of each month during the school year, and this is the last mass for the choir this year. In fact, they combined both the children's and adult choirs for Pentecost Sunday. It was a wonderful mass, even though it ran a bit long. We also celebrated the monthly Sacrament of the Sick afterwards. It made for a lengthy Sunday morning.

At the end of the day, I emailed Dr. A.W. about the blood test results from yesterday, and also to get us a refill for a prescription (1mg Prednisone tablets).

Wednesday, June 6

Dr. A.W. got back to us this morning - she was having a problem with her email at the hospital. Anyway, the numbers are all back and they look excellent - CK 88, AST 23, ALT 15, LDH 186, aldolase 5.0, vonWillebrand's Factor 106, WBC 4.63, hematocrit 37.2, platelets 377, and Sedimentation Rate 10. They are happy enough with this result to let us taper Methotrexate by one pill to 12.5mg/week starting tomorrow. Cool!

Thursday, June 7

Current Drug Dose: Prednisone: 3mg/day Quinacrine: 100mg/day Folic Acid: 1mg/day Calcium: 900mg/day Methotrexate: 12.5mg/week

Wednesday, June 13

Today was field day at school for Julia. This means that the entire population of the school spent the whole day outside, playing games and generally having a good time. It also means that Julia had to be extra vigilant about the sun today, since she was going to be out in it for a long time. We are well aware that too much sun can cause her to get a flare of her JDMS.

In her morning routine, we had her put on an extra-thick layer of her favorite SPF-45 sunscreen lotion. Since she was wearing shorts, she also had to put some on her legs. We also sent a note to school with her asking that she put extra sunscreen on during the day, especially during the late morning when the sun is the most intense. She also wore a hat (a Boston Red Sox baseball cap) the whole time she was outside.

The extra effort paid off. Julia apparently got no sun exposure at all, especially to her face. No redness, nothing. I think part of it is that we discontinued using Quinacrine a few weeks ago - one of its side effects is increased sensitivity to the sun. This is a good thing!

Sunday, June 17

It's Father's Day, and I was rewarded with an almost totally free day to relax. Wow! It was almost hard to not do stuff. I watched a Red Sox game on TV (they won), surfed the internet, and we went out to a nice dinner.

It took a bit of doing to make this come together. I had to mow the lawn on Friday night, and we had a ton of errands to run on Saturday. It was very welcome to be able to slow down for a change. Thanks to my wife and to Julia for making this day happen for me!

Saturday, June 23

We had a wedding today, an evening ceremony for a relative of my wife's. Julia looked lovely in a long, flowing purple dress. We noticed several times how Julia's skin is starting to look less and less yellow already, and it looked absolutely great tonight. Several relatives who know about Julia's JDMS commented on how good she looks. It's very gratifying to see her doing so well!

Sunday, June 24

Today is the first day of our first-ever cruise! We are sailing from Boston (no flight needed) to St. George's, Bermuda.

The day started, well, yesterday. We spent several hours of intense packing and wardrobe selection Saturday afternoon, before the wedding. More packing early this morning, then off to Sunday Mass, then we have just a couple of hours to cram everything into the suitcases. I hate to admit that there was more than the usual amount of stress and yelling around our house this morning!

Naturally, we packed Julia's medicines, but instead of the usual 7-Day pill dispenser we usually use, we had to bring all her original drug containers for customs purposes. We also packed extra sunscreen.

Shortly after noon, suitcases stacked by the front door, the stretch limousine arrived to whisk us off to Boston. Our ride in was wonderful! The limo was huge, and had 2 TVs, a VCR, and a CD player for us to use. We enjoyed the luxury, and it was well worth the extra cost beyond what a ride in a town car or even a van would have cost.

At the pier, there were lines to wait in, but it was worth it! The ship, the Norwegian Cruise Line's Norwegian Majesty, is large - it's over 1/8th of a mile long! I am told that it's not the largest cruise liner, but for our first cruise ever, I don't think we'll notice the difference.

We got into our cabin, which is relatively spacious but is actually smaller than our bathroom. We have a view, but it is of a life boat. I guess I am picking nits here, because overall everything is very nice, and the staff has been excellent so far.

Before we sailed, we attended a mandatory "Muster Drill". This is where all the passengers on the ship grab their life vests and go to a deck station assigned based on your cabin number. They explain how to properly put on the life vests and what will happen if the life boats are needed. They said that this drill is required by "international maritime law". Whatever. The Titanic jokes were flying hot and heavy during the drill, let me tell you.

The ship left the dock at about 4:45PM, about 45 minutes late from the expected departure time. We grabbed a choice spot on the highest deck fore (that's the front of the ship for you landlubbers), starboard side (the right side) and watched as Boston got smaller behind us. I tracked our progress with my Garmin eMap handheld GPS unit, which helped us identify various landmarks in Boston Harbor as we passed them. We saw Spectacle Island, Fort Independance, Quincy, Hull, Weymouth, and several lighthouses. Nice ride, nice view. Oh, and that ship's horn is VERY loud when you're about 20 yards from it!

As we were warned, there is no shortage of food here on board. There is a buffet line that seems be open 24 hours a day. Scratch that, it is literally open 24 hours a day! Hungry at 2:00AM? Not for long! We grabbed a snack after we settled in our cabin and waited for our luggage to be delivered. We attended some informational meetings and then had dinner at one of the restaurants. There is a lot of staff, and they all work very hard to make sure you have a good time.

Monday, June 25

We got to bed early last night, right after dinner, and that's a good thing because we lost an hour of sleep. Bermuda is on Standard Time, not Daylight Savings Time, so the ship's time matches that. Spring Ahead and all that.

I got up and went to the gym, which is okay. The weight machines are all electronically driven, which makes them a little hard to use. I prefer the weights-and-pulleys system. Anyway, after 20 minutes on a treadmill, I ended up leaving the gym and walked around Deck 7. There is a jogging track that is 1/4 mile for each lap, and I walked 8 laps. I was doing 12-13 minute miles (walking), so I got a pretty good workout. The winds at the front of the ship are incredible! The view is also wonderful early in the morning with the sun just up and nothing as far as the eye can see in any direction except us. I plan to make this my morning routine.

Julia's mom got a pedicure while Julia & I hit the breakfast buffet. Afterwards, we all went to morning Mass, then Julia & her mom went to the pool (Julia to swim, mom to sit and read). We enjoyed a sit-down lunch together.

After lunch, mom went off to read in the sun some more, then to aerobics class. Julia and I want to a Filipino language lesson with a member of the staff who was, naturally, from the Phillipines. Julia has a classmate at school who is Filipino and wanted to be able to say a few words. It was fun! We learned a few words, like Salamat means "thank you" and Mahal kita means "I love you".

Tonight was Formal night on the ship. Aside from the staff, there were few tuxedos being worn, but most men had dark suits on, and the women wore evening gowns. We ate at the more formal restaurant tonight, with a lovely view of the ocean. Julia ordered lobster (off the kids' menu, yet!) for the first time, and she certainly semed to enjoy it.

After dinner, there were numerous photography stations where we got our picture taken. Of course, you can purchase copies for a king's ransom, but if they come out good they make an excellent memento of the trip. One photographer noted how "perfect" Julia's makeup looked, unknowingly referring to the heliotrope rash on her eyelids. It really does look like eye makeup now.

We went to the Captain's champagne party where we had a some drinks and did some dancing. Julia's drink of choice is clearly going to be the Shirley Temple (as made here, that's Sprite, Grenedine, and cherries (sometimes as many as 5!)). She's already had a bunch of them! Finally, we went to one of the clubs and took in a comedy show. The comedian was named Ted Holum, and he was pretty funny and kept all his humor kid-friendly, although several risque jokes went right over Julia's head (as they should!).

Tuesday, June 26

This is our day to arrive in Bermuda! Woo hoo! We were schedule to dock at 11:00, but the captain explained that there were mechanical problems with one of our four engines (good thing we weren't flying!). This limited our speed to about 18 MPH (as opposed to the 20-21 MPH we could have made), and made our arrival about 2 hours late.

Sailing into St. George's harbor was magnificent! A couple of hours before we landed, we were first able to see land - just a line gently rising up at the horizon. We also saw another cruise ship off in the distance. As we approached, we could see houses and other buildings dotting the coast. Soon, from a vantage point on the uppermost deck of the ship, we watched the other ship make its way into the harbor, and we followed.

Docking was itself slow and majestic. We gradually pulled into our mooring. Once we came to a stop, the ship was secured and a man in costume rang a large bell and loudly announced our arrival and encouraged us to spend lots of money. No, really.

We spend a couple of hours walking around St. George's to do some shopping. We picked up a few gifts and shirts and snacks. We also found a local place, a cyber cafe called Caffe Latte, that offers *real* internet service (not the so-called service available on the ship, which makes AOL look like the best internet service on the planet), and I was able to read my email.

Late in the afternoon, we took a glass-bottomed boat tour. The tour was scheduled to take us on some sightseeing points around the area, then troll over coral reefs to look at coral and sea life, then head over to Fort St. Catherine to look for sea turtles that live there.

As we waited for the boat, it began to rain. It looked like a local shower that would pass quickly, but we had no such luck. It rained for practically the entire tour, and it poured on us for a good part of it. The tour guides kept says "we've never had it rain for a whole ride before". First time for everything! It did rain practically the whole time, sometimes really pouring, and despite being under a canopy, everyone got a little wet and some people got soaked, including Julia! We did see some fish and corals, and also a couple of sea turtles, so the trip wasn't a bust, but it wasn't what we hoped for or expected, either.

After we got back, we grabbed some food for Julia from the buffet, and she went off to be with the Kids' activities. We're not sure what they did, but we picked Julia up 3 hours later and she had a blast! She wants to go back and do all the other kids' stuff later in the week. Cool! Free babysitting! In the meantime, the two of us ate in the nice restaurant, Le Bistro (it has a cover charge to keep the riff-raff out). The food was wonderful, including a milk chocolate fondue with fruit chunks for dessert.

After dinner, the two of us went up to a bar to partake of the martini tasting. They gave us 4 mini-martinis to try, and then we could have a full-sized version of whichever one we liked best. We also listened to an excellent bar pianist, Randall Powell. He has a teriffic voice, and he took requests all night. Julia joined us when her kid's activites were over, and the pianist and Julia went back and forth with requests. It was a lot of fun, but we got in so late!! (for us, anyway)

Wednesday, June 27

For our first full day on Bermuda, we decided to take a morning tour of some of the attractions between St. George's and the capital city of Hamilton. A taxi, which is just a minivan, picked us up at the ship. Our driver as very knowledgable about Bermuda and its history, although he drove like a crazed maniac (which means, like everyone else). The streets are very narrow and winding, but there are so many stunning views along the way that you hardly notice.

Our first stop was Crystal Caves, an underground cavern of limestone. The floor and ceiling are covered with stalagmites and stalactites of limestone that they say grow an a rate of just 1 inch per hundred years. The caves were found several decades ago by some boys playing soccer who hapened on a hole in the ground. The hole led them to the caves. There are some beautiful formations of limestone, with nicknames like "dragon, "alligator" and "cobra".

Next stop was the Perfumery. This is a small perfume factory that uses local flowers to make their scents. They gave us a brief tour that explained the history of the factory, showed the steps they take to make perfume, and they provided samples. Of course, this led to a trip to their store. The Perfumery is on some beautiful grounds which showcase some of the local flowers they use to make perfumes.

We then made our way to the Glassblowing Factory. We got a brief tour of the glass blowing, and saw a glass blower make some Christmas ornaments. We went through their store and Julia bought herself a lovely and delicate hibiscus flower made entirely of glass.

Following a drive that took us most of the way to Hamilton via the south road, we stopped at Ft. Hamilton. This was once a military fortress, as evidenced by cannons that are still on display. Today, it is a park with a picturesque view of Hamilton and its harbor. Julia noticed the thick, coarse grass that seems to grow here and everywhere else on the island.

Our last stop on the tour was in the city of Hamilton. The driver dropped us off on Front Street, in front of two cruise ships that were docked there. We had some lunch in a restaurant there, then did some shopping. Julia's mom was not feeling well, so we didn't stay as long as we might have liked. We did buy ourselves some shirts and other stuff, but we hired a taxi and made our way back to the ship.

Julia slept in the taxi on the way back, and her mom took a nap in our cabin. I went off to the local cybercafe and checked my email for a little while. We had decided to meet some friends (yes, we actually knew someone on this cruise) for dinner. We ate at Seven Seas, which was featuring a "Presidential" menu theme. Dinner was wonderful! We then all decided to go to the comedy show, with magicial-comedian James Michael (who sais he was the son of the comedian we saw the other night, Ted Holum, but I'm not sure if he was kidding or not). He was a riot! He also heavily harassed pretty much the entire front row of spectators. His finale trick was to escape from a straight jacket. Good show!

Thursday, June 28

This morning, we went to mass at Stella Maris ("Star of the Sea") church, just a 3 minute walk from the ship. It's a beautiful and friendly church, and the pastor intorduced himself to us, and also introduced all his fellow parishioners to us as well (the "regulars"). We will probably go back tomorrow for our last full day on Bermuda.

After church, we walked over to Tobacco Bay Beach, just a 15 minute walk from the dock. This is a shallow bay with a small beach, and it was quite crowded with passengers from the other cruise ship docked at St. George's. You can tell who is from which ship by their towels! We saw fish in the water and splashed around for a while before heading back.

We grabbed a quick lunch then set off on a snorkeling trip. First, we collected our gear (mask, snorkel, and fins). A boat took us to the other side of the island and anchored there. We got our safety drill, then we all got off the back of the boat. The waters were a bit choppy, but not too bad, The snorkeling was pretty good. We bought an underwater camera, and I took a bunch of pictures.

This was Julia's first time snorkeling. She stayed with her mom the whole time, but she did a good job. She said she really enjoyed it, and would like to do it again some time.

Friday, June 29

We started today with Mass at Stella Maris again, except the three of us were the only people there for it! The priest was very nice and accommodating and friendly.

After mass, the girls went and did a bit of shopping in St. Goerge's whil I went to check my email. We met back at the ship for a Helmet Diving expedition. No, that doesn't mean that we dove for helmets! This is where a diving helmet is placed over your head as you descend into the water. The helmet is fed by compressed air lines. We'd heard this was fun, though pricey, but we wanted to try it anyway.

This was awesome!! It was probably the one best thing we did on this trip. They made us sign a very scary-sounding liability waiver. Then, they explained the safety rules. They showed us the hand signals to use, since conversation is impossible under water. They told us about the safetys that are built in to their system. Finally, the explained how the helmet system works and what we have to do.

The helmets rest on your shoulders and have a valve on one side where are is pumped in. They are very heavy - about 90 pounds (they had a slightly smaller one for Julia). The dive operator went down first to help us and show us the sights. Among us, Julia went first; she climbed down the ladder off the back of the boat to about shoulder level, then they popped the helmet on her head and down she went! There was a moment of trepidation when we realized that Julia's mom and I were still on the boat, and Julia was 12 feet underwater!

We followed her down into the water the same way. This was incredible! Here we were, walking around among the coral reefs and the fish! The vision was very clear and it was easy to see everything. The fish would swim up to within inches of your face! I had the underwater camera from yesterday and took the rest of the pictures on it. I hope they come out. Look for samples here in a week or two if they do!

After the speedboat ride back, we got in a little last minute shopping. I got myself a couple of tee-shirts and the like.

We reboarded the ship to prepare for the sail out of St George's. We took a quick shower, grabbed some lunch from the buffet, then parked ourselves on the upper observation deck for the ride. I think it was just as magnificent as the sail into Bermuda, but since we were leaving instead of arriving, it was more filled with a feeling of longing and sadness. Still, seeing this huge ship sail through that tiny cut in the reef is an amazing thing.

We had a quiet afternoon as Julia went off the the kids' club again. They had an unexpected, pleasant surprise on the schedule this afternoon - a renewal of Marraige vows. This was a nice ceremony attended by a dozen or so couples, some married as much as 50 years!

We decided to eat in the more formal restaurant tonight, the Four Seasons. The food was very nice, but the atmosphere here, as it was on Formal night, is much more subdued than the other restaurant (the Seven Seas). After dinner, Julia was off with the kids again, while we went to another comedy show with Ted Holum. Ted was not a funny as his first show; he told a bunch of jokes I'd heard before. After that we went to Karaoke in one of the lounges. Some of the singers were impressively good, while others were so bad they had me hoping for an iceberg in our path. Julia couldn't sleep, so she joined us at Karaoke for a while.

Saturday, June 30

This is our last full day of this cruise (sob!). As I write this, I am watching a beautiful scene of the sun over the Atlantic. There is no morning mass today, so the girls are sleeping in, despite us getting an extra hour of sleep last night as we returned our clocks and watches to Eastern time last night.

This was our relaxation day. We all just hung out, did whatever we felt like, and took it easy. We spent so much of the week doing stuff that we needed a break! I hung out and read magazines, and had a 2-hour workout in the afternoon. Julia & her mom took a nap, and Julia went off to the kids' club again. We attended weekend Mass later in the afternoon, which was surprisingly well-attended considering how quiet the daily masses were.

We had a wonderful Italian dinner, while Julia ate from the buffet, then was off with the kids again. We went off to listen to piano music. The pianist in one of the lounges was fantastic! He was absolutely mesmerizing to watch.

At 10:30, it was time for Karaoke again. Juli had been saying all day that she wanted to sing, but we weren't sure if she was serious. She was! She sang "My Heart Will Go On" from Titanic, and she did a very nice job of it! I guess that year in the children's choir at church has helped her with her singing skills and self-confidence in front of an audience. She also made a new friend, Kelly, who also sang a Karaoke number. These two exchanged addresses and plan to stay in touch.

After all that, we had to pack our bags! They make you put all your luggage out on Saturday night so they can sort it and have it ready for debarkation.

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Updated July 2, 2001
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