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Saturday, March 3

I was away for a weekend retreat, so Julia & her mom had the weekend for whatever they wanted. They drove into Boston and got blood drawn at Children's (see results below). Then they headed over the to New England Aquarium for a few hours. Julia always has a good time there.

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

Sunday, March 4

I understand that the bulk of the weekend for these two was spent engrossed in the latest thing, soap making. I returned from my retreat to dozens of variously shaped and colored bars of soap.

Monday, March 5

A huge blizzard was predicted for the entire northeast United States today, and Julia had school cancelled in anticipation. The morning forcast called for heavy snow to start in the midday and continue for 24-36 hours, dumping 2 to 3 feet of snow on our area. Fortunately (or unfortunately, depending on your viewpoint), the snow remained fairly light throughout the day and we only got about 3 inches before nightfall. They could easily have had school today, but based on the forecast, there was no way to know this, and it would have been a minor disaster if they were right and hundreds of kids got stranded at school.

Despite the predictions and the snow, I found myself home from work anyway. I am very sick! I am totally wiped out today, and I slept for several hours during the day, which is very unusual for me. By the end of the day, I started to have a sore throat and a cough when I would lie down. Ugh.

The heavy snow did begin in the evening, and it snowed heavily all night long. In anticipation of this, Children's Hospital called to cancel tomorrow's scheduled appointment. I rescheduled for some time in April, but I emailed Dr. A.W. to see if that was okay. She found me a not-so-distant appointment instead. She also emailed most of the blood results from Saturday. In addition to what's on the chart above: albumin 4.6, White blood cells 4.45, Hematocrit 39.1, and platelets 443. Everything is normal, and if von Willebrands is also normal, we'll make another move.

Tuesday, March 6

The blizzard was not quite what it was cracked up to be, but it was still significant. We have had a lot of snow lately, and this storm dumped about 12" on top of that overnight. There isn't much place to put it all! We have a snow bank at the base of our driveway that's over 8 feet high and is getting ever wider at the base. There are 6-7 foot piles along the sidewalks and the driveway. There has to be almost 4 feet of snow on the ground where it isn't piled up from shoveling or blowing.

So, no school again today for practically the entire state, Julia included. Our town is usually the last to cancel school; if there's no school here, you know it's bad. In any case, whenever there's a storm, Julia's mom has to work because of her job. So she is gone, I am still very sick, and although Julia & I spent a lot time together, I tried to stay away from he so she wouldn't get what I have. We played some games, put together a puzzle, and other fun indoor stuff.

Wednesday, March 7

If you can imagine, it snowed some more overnight, a good 6" or so. The total for this storm is about 20", most of it the heavy, wet variety. Amazing. They cancelled school yet again today - I expect this is so that snow removal can take place. They will be going to school until the 4th of July at this rate. Her dance lesson was also cancelled.

Dr. A.W. emailed with the von Willebrands result - 123! Julia has had essentially normal lab results for over a year. We are allowed to go down to 17.5mg of Methotrexate starting this week.

Thursday, March 8

Dad messed up and accidentally gave Julia her old dose of 20mg instead of 17.5mg of Methotrexate today. I guess we'll go down on her dose next week instead. Julia went to school for the first and last time this week - Friday was a previously scheduled day off for her school!

Friday, March 9

Julia spent the weekend, starting today, at her grandfather's house while her mother & I went up to Maine for the weekend. This was not a vacation for us, but we are involved with a Marriage Encounter weekend there. We have been looking forward to this, but I would have preferred to be more healthy.

Thursday, March 15

We finally got her dose right, and Julia is now getting 17.5mg of Methotrexate each week. This is below the dose that we switched from oral to injected MTX. Next time we see the doctor, we are definitely going to ask about switching back.

Current Drug Dose:

Prednisone: 3mg/day

Quinacrine: 100mg/day

Folic Acid: 1mg/day

Calcium: 900mg/day

Methotrexate: 17.5mg/week

Saturday, March 17

Today, Julia had her first celebration of the Sacrament of Reconcilliation. Because of a conflict between CCD and Dance, we have been giving Julia the Reconcilliation lessons at home. This has been a very rewarding experience for both her and us.

Anyway, today was the actual ceremony where Julia and her 47 classmates celebrated the Sacrament. Julia even got to be one of the readers of the prayers during the service (which wasn't a Mass). It was very well done, and was actually quite inspiring and awe-filled. Julia said she enjoyed the experience, even though she didn't get to celebrate with our regular parish priest. Congratulations, Julia!

Tuesday, March 20

This is the date when Dr. A.W. could fit us into her schedule, so we made another trip in to Boston. We got there early, but since we were a "fit-in" appointment, we had to wait quite a while before the doctors could see us. Over an hour, in fact, but they apologized profusely and we had expected to wait, so it wasn't so bad. Checking Julia's vital signs, she is a bit taller, but also a bit heavier. Her blood pressure and temperature were normal.

When they finally did see us, they raved about how well her rash is looking. They said that her knuckles are getting "less papular" - the papules are thinning and looking less red, and her face is very noticibly improved. This is very heartening, since I judged that Julia's rash was having about an average day. Many days lately, her rash has been all but non-existent.

Given how well she is doing clinically, and how all her blood work continues to be normal, we talked about the next tapering step. I suggested that this might be a good time to return to oral Methotrexate from the injections as our next step to taper her meds. Julia has been getting injections weekly for almost 2 years now.

Both Dr. S. and Dr. A.W. concur that this is a good time to make this step! Julia is currently at 17.5mg/week injected, so our first step is to stay at that same dose on oral MTX. Dr. S. said that this is considered a tapering step, even though the dose is the same, because the oral MTX is not quite as effective as the injected stuff.

The plan is to use up the rest of the injectible MTX we have, which is 2 more doses (this Thursday and next). After that, she will take seven 2.5mg pills of MTX instead. Julia was thrilled to hear this! Honestly, doing the injections is not a big deal any more. It's so routine - it usually takes less than a minute, and is not painful at all for Julia most times. Still, it'll be a very tangible step forward for us - no more needles, no more deliveries to hassle with.

Sunday, March 25

We had visitors today, relatives visiting the US from the Netherlands. None of us had even met them before. It was actually quite enjoyable, and they shared a lot about the differences between life here and life there.

Julia seems to be developing a cold or something. She had a cough, and we had to give her a cough suppressant pill at bedtime so she (and we) could sleep.

Wednesday, March 28

Julia still has a low-level cough that seems to be pretty minor during the day, but gets worse when she lasys down at night. It's meant a cough pill at bedtime every night, not something we like to do, but having her lose sleep is something we like even less.

Julia had a dentist appointment today, and got a clean bill of oral health. She is still waiting for a few teeth to come out and be replaced by permanent teeth. Julia has a few gaps, so she'll eventually need to be seen by an orthodontist, but not until all her permanent teeth are in. Also, the dentist was not available, so she'll have to come back for a brief follow-up in a couple of weeks.

Thursday, March 29

This is a big day in our house. This is the day Julia gets her last Methotrexate injection for the time being. The dose remains the same, 17.5mg, but starting next week it will be 7 little pills instead of a shot. We had a little ceremony as we dumped the last needle into the sharps container, We probably gave her 80 or 90 shots at home over the past 2 years, but we are glad to be rid of that ritual. All in all, a good day.

Saturday, March 31

Julia and I took a ride into Boston for her monthly blood work. It went very smoothly, as usual. Afterwards, we took a walk to the Isabella Stewart Gardner Museum - it's only about a 10 minute walk away from Children's Hospital.

The museum was the home of a wealthy Boston woman who spent most of her adult life collecting works of art from around the world. The museum/house is laid out with a large central courtyard, three floors of displays of tapestries, paintings, sculpture, furniture, and documents. The fourth floor was Mrs. Gardner's residence. Also, for those of you with long memories, the ISGM was the target of a very high profile theft of several works back in 1990. None of those stolen pieces have ever been recovered - there are still empty frames where those pieces once hung.

This is a wonderful museum, but it is not laid out like most museums, with rooms grouped by artist or period. Instead, each area is decorated exactly as Mrs. Gardner chose to decorate it. In fact, her will stipulated that everything must remain exatcly as it is, or the whole collection must be sold off and the proceeds donated to Harvard University! She chose to place works of art together as she thought they would look best. As you might imagine, there are some interesting juxtapositions. The area immediately surrounding the courtyard has pieces from 12 different centuries. It was our first trip to the Gardner Museum, and it was a lot of fun.

One added bonus was a Guide For Children that they gave to Julia. It's basically a scavenger hunt, where kids are encouraged to find certain smaller pieces of art around the museum. Julia took this to heart, and we found all the pieces in the brochure.

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

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