About Julia
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 Forward to August
Thursday July 1 Today, we had to go into the hospital to give Julia her first regular weekly outpatient Solu-Medrol infusion. This is my first trip to the Center for Ambulatory Treatment and Clinical Research (CAT/CR) unit at Children's. They are set up with a large room with 5 or 6 patient stations tthat include a reclining chair for the patient, a couple of side chairs for visitors, and a TV/VCR setup. They also have a series of private rooms that are similarly equipped. They set us up in one of the stations in the large room. After Julia's bad experience with the IV in her arm at the elbow when she was admitted, we tried to get them to put the infusion into her hands or somewhere else today. We came an hour before her appointment and explained everything, and had the nurse put EMLA on a couple of likely places. She said the best prospect was in her left wrist, so we put the EMLA there and on the corresponding spot on her right wrist. After we got EMLA'd, Julia got vital stats done: Weight 33.8kg/74.4lb, Height 128.8cm/51", weight about the same and height up a bit. Her BP & Temp were also normal. We came back an hour later and the nurse had a very difficult time putting the IV in the selected spot. She spent almost half an hour finding the vein; she did find it eventually and got the IV going. Apparently, the EMLA can sometimes cause problems finding the vein, and this was one of those times. The nurse was looking longingly at the vein in her arm at the elbow, but there was no EMLA there and the time was getting too late to reapply EMLA there. She did recommend that we go with the better vein next time. Julia seemed receptive to the idea after seeing how long this process took. Once the IV was in, the nurse drew blood for the lab work, then started the IV. They use an electronically controlled box mounted on a wheeled stand that basically pushes the plunger of a syringe very slowly, steadily, and gradually. They program it with the size of the syringe, the desired rate of medicine delivery, and the unit does the rest. They set Julia up to receive her 1000mg dose over 2.5 hours, instead of the 3 hour infusions she got when she was admitted. After the dose is infused, they do a "flush", a 5 minute infusion of saline to get all the medicine through the plumbing. We settled in to wait for the device to deliver the meds. Julia and I watched The Empire Strikes Back. They have a little kitchenette set up with drinks and snacks available, and they encouraged Julia to drink a lot - apparently, Solu-Medrol can cause kidney problems if the patient is dehydrated. It went pretty smoothly, and we didn't have any problems. Her BP and temp stayed normal throughout. Dr. S. came by just as we were finishing up. His goal is to get Julia down to every other week infusions by the end of the month, so he's going to increase her Methotrexate to 30mg/week. He also wants to save her having to get a shot, so we've going to give her her regular 25mg injection tomorrow instead of Saturday, and then next week she can receive her 30mg dose intravenously when she gets her SoluMedrol infusion. He also said that since we didn't have any problems with the 2.5 hour infusion, we can go to a 2 hour schedule next time. He also did a quick clinical exam, and said she seemed a bit stronger than last week. Lastly, he also gave us the numbers from today's lab tests. The CK number is up, but he said that was expected. The LDH is headed in the right direction, and the AST and ALT numbers continue at about the same levels.
Sunday July 4 Happy Independance Day (here in the US, anyway). We are in the middle of a rare weekend with no major commitments!! We're also in the middle of a heat wave here in the northeast US, with temperatures pushing Fahrenheit triple digits. We're staying inside and watching movies and taking it slow. That's what holidays are for, right? Tuesday July 6 Julia was complaining that it was difficult to swallow today, and also mentioned that it happened to her yesterday, too. I know that difficulty swallowing is a symptom of JDMS, but she's never had it before and she's in the middle of intensive steroid therapy, so I doubt that's what's going on. We'll run it by Dr. S. on Thursday. Thursday July 8 Time for another weekly outpatient Solu-Medrol infusion. This week's visit went very smoothly. I put EMLA on Julia on the inside of her left elbow before we set out for the trip to Children's. We got to CAT/CR a little early and everything went well. They set us up in one of the patient stations in the large room again, which is fine. First, they took Julia's vitals; she's gained a pound since last week, but everything else was the same or normal. They set the infusion device with a 2 hour timer, after taking blood for the lab. This week, we watched Return of the Jedi on our VCR. About halfway through our infusion, a group of people came in and they took a bunch of photos of the patient in the next bed. It turned out that they were from The Boston Globe. They were there to get a picture for a story on how Children's Hospital was named the #1 pediatric hospital in the US for the 10th year in a row by US News and World Report magazine. Congratulations to Children's! Dr. S. came by toward the end of the infusion. He did a quick clinical exam, and said she seemed stronger than last week. He gave Julia her 30mg Methotrexate dose through the IV. We talked about a couple of issues on our minds. Julia's complaint about difficulty swallowing was not a cause for concern - we'd never had this before, and he said he would be surprised if there were anything to it at this time, when she's getting stronger. We also asked about calcium supplements; he said that if she's getting 2-3 glasses of milk every day, that should be enough. Lastly, he said the numbers from today's lab tests weren't available yet by the time we left. I did get them later; they are below. The other numbers are Sed Rate 9, WBC 8.9, hematocrit 38.9, and platelets 365.
Friday July 9 Julia had a tough day today. She was very tired and cranky all day today. Also, today's weather was a light overcast, so Julia went light on her sunscreen. This turned out to be a mistake. She decided to go swimming in the afternoon, and didn't have any more sunscreen applied before she went out (she knows better, even if it's cloudy out). Tonight, she had a slight sunburn on her shoulders and upper back. I hope this doesn't cause any problems, as we know that sunburn can cause JDMS to flare up. This is a very mild sunburn, it probably won't be a problem, but it certainly is a wake-up call. She just bawled for a long while when she realized her carelessness; being tired certainly didn't help. Saturday July 10 Another tough day. Julia was still tired; the best theory we can come up with is between the increase in Methotrexate dose and the fact that it was administered intravenously left her a lot more tired. We went to a party this afternoon, and Julia just lay in a hammock and slept for most of it. Much to our relief, she seemed a little better after waking up, and even had something to eat. Sunday July 11 Finally, Julia is feeling back to normal. We had a day filled with Stuff To Do Around The HouseTM. Low key, what we need right now. We actually got Julia to do her Physical Therapy exercises a few times today; she definitely seems stronger and more flexible to me now. Monday July 12 Dr. A.W. is back from her vacation, and gave us a call tonight. She got my email asking for the July 8th lab results (great! See above.), and the earlier Aldolase results, but she decided to call and see how Julia was doing instead of just giving me the raw numbers. We talked about Julia's tiredness, and how she seems to be doing better otherwise. Thursday July 15 This week's outpatient Solu-Medrol infusion was attended by her mom. This visit went less smoothly than last time. They has something of a tough time getting the IV needle in. They set her up in a private room this week. First, they took Julia's vitals; everything was the same or normal. They set the infusion device with a 2 hour timer, after taking blood for the lab. She complained about about the needle being uncomfortable, but it was not unbearable for her. Dr. S. and Dr. A.W. both came by today. They were encouraged by Julia's strength - she was actually almost able to do a complete situp. They also administered Julia's 30mg Methotrexate dose.
Friday July 16 Dr. A.W. called today with the blood test results. Aldolase lags, as usual, and the rest are posted above. Also, the rest of her results were okay: Sed Rate 10, WBC 7.06, crit 38.1, and platelets 340. Her results are about as expected, up a bit almost across the board. Her body is still adjusting to the changes in her meds, and she hasn't gotten the full effect of the increase in MTX yet - maybe in the next week or two. Despite that, Julia's mood was dramatically better than it was last week at this time. She's not crabby and tired today. She's showing a lot more patience and she obviously feels a lot better. Saturday July 17 We spent the day at the Museum of Science in Boston today. Dr. S. said he might be there today, too, but we didn't see him there. We went to a show at the Hayden Planetarium, and saw the movie Island of the Sharks at the Imax Omni Theatre. We had a nice time - they had a lot of new displays since the last time we were there a couple of years ago. It was HOT outside this weekend, pushing 100°F both days. Monday July 19
Julia is spending this week at a spcial camp, at the same place she was going to have Basketball camp last month. This is going to be a lot of fun for her - they have a Halloween in July party, a slumber party, and a Crazy Hair Day schedule. They have plenty of gym and pool time scheduled, but it'll be low key. This camp should not be as demanding as basketball camp would have been. She's really been looking forward to this for a long time.
Thursday July 22
Another outpatient Solu-Medrol infusion today. We got another private room this week. This week's movie: Jurassic Park (we've seen it about a million times. I never get tired of seeing the lawyer get eaten :). First, they took Julia's vitals; she's gained a couple of pounds (on a different scale, however), and everything else was the same or normal. Dr. S. came by and checked on Julia. I reported that we had a very good week - Julia's been stronger, less tired, and less crabby than she has been in a long time. He also asked if he minded visitors - another patient of his who was just diagnosed, who had some questions. We agreed, naturally.
Dr. A.W. came by as the IV was being put in. She gave Julia her 30mg Methotrexate injection after blood was drawn for lab tests. We chatted in general terms about how well Julia seemed to be doing. She gave Julia a couple of strength tests, which was limited by the infusion, and she did very well. She noted that her rash is not really much better than before she went away on vacation. I agree - it got better for a few days after she was admitted, but it's been about the same ever since.
About halfway into our two-hour infusion, Dr. S. came by with our visitor - a 2-year-old boy who was diagnosed with JDMS on Monday, and his mom. He was kind of shy at first, as many toddlers are, but Mom had lots of questions. She wanted some hope, some sense that this is not the end of the world. I explained that usually, kids go through several cycles of treatment, taper, and relapse, as we have been dealing with, but that eventually we have permanent remission.
They also have a whole different set of concerns than we do. He's just learning to walk, and the muscle weakness is limiting him. He hasn't had all his immunizations yet; that leaves a choice between delaying them, or stopping Prednisone long enough to have them. He also can't really communicate what's wrong with him. They don't have school and other social problems to deal with like we do, though. Thinking about this later, we realized that if Julia was going to get JDMS, she got it at the perfect age medically - after all her shots, but before the socially critical teenage years.
Anyway, we only had a few minutes, but I offered that we all get together some time. I really hope they take us up on it.
Friday July 23 Dr. A.W. called today with the blood test results. Aldolase is not ready this week, and it was in fact not even done last week; apparently they didn't have enough blood to perform the test. The rest is posted above. Also, the rest of her results were okay: WBC 7.68, crit 38.7, and platelets 376. The CK is down, which is good, but everything else is up, which we'd rather not see. She said that CK is often the first to be affected by Methotrexate, so these numbers are a good sign that it is indeed starting to kick in. She also mentioned that they look for signs that the MTX is not being tolerated well; things like AST & ALT ratios get out of whack, and other counts can indicated problems. She emphasized that this is not happening to Julia, and she seems to be tolerating it just fine. They really look at the big picture. The blood work is one part of it, but the clinical exams and the evaluation by the patient and her parents is important. Overall, she is doing well. Coming off of the week we had with her, I have to agree. Sunday July 25 Today begins our vacation. We are vacationing in the North Conway region of New Hampshire, just a few hour's drive away for us. It really is a beautiful area. We have a townhouse rented for the week, and we're looking forward to some fun and relaxation. We really laid low today. We drove up, stopped for lunch, and bought some groceries for the week before heading to the place we're staying. It was raining here all afternoon, and thunderstorms threatened a few times. We stayed in and relaxed and got some reading done. (including email! have laptop, will travel!) It felt nice to have no commitments for a change. Monday July 26 Today, we played 36 holes before lunch - mini-golf, that is! Julia is really pretty good at it, and she even won a free game by getting a hole-in-one on the correct hole! It started to rain juast as we finished the last hole. We grabbed a quick lunch, then went to see the movie Inspector Gadget. We hung out for the rest of the afternoon, then grabbed dinner at a new restaurant called The Muddy Moose. Nice place; if you've ever been to a Bugaboo Creek, imagine it without the animatronics and you have the idea. Our wiatress was just a bit pushy about Julia's "sunburn", but it didn't ruin our evening. Tuesday July 27 We took a ride across the lovely Kancamagus Highway to Lincoln, NH and the Lost River Gorge. This is a natural gorge that has had a boardwalk built into it. There are caves and passageways that you can climb through. This started out okay, but after spelunking a few caves, Julia started to get very tired and cranky. We skipped the last couple of caverns. Julia "panned" for minerals and came up with a few small pieces of garnet, quartz, and some others. We ate our packed lunch and watched the birds, squirrels, and chipmunks. We hit a couple of gift shops along the Kanc on the way home, then went to see Star Wars Episode I again (Julia's 4th time). Wednesday July 28 Today, we drove north to Six Gun City, an old west theme park. It was rather hot today, so we took it slow. They had some fun stuff to do here, including a water slide and motorized bumper boats. They also had a nice collection of carriages and sleighs, mostly from the 19th century. We tried to keep Julia in the shade because the sun was really blazing down today. She had a generous layer of sunscreen on today, and we didn't have any problems. Thursday July 29 We decided to get an early start and catch the first Cog Railway train going up the side of Mount Washington. We debated driving up the mountain, but the Railway seemed a lot more fun and relaxing. It turned out to be a great move! The ride up the mountain is fantastic. You climb up at an average grade of 25% (25 feet vertically for every 100 feet horizontally), with a maximum grade of an incredible 37% - at one point, the front end of the passenger car is fully 14 feet higher than the back end! The views are gorgeous. The forecast was for showers, so we were expecting the worst. However, we got to the top, and it was clear - and the view from the observatory these was nothing short of spectacular. We climbed up a small hill of rock to the surveyed highest point, 6288' above sea level. Julia struggled to get to the top, and it felt bitter cold - we had shorts on because of the heat at the base, but at the summit it was just 49°F and a wind of 15-25 MPH made it feel a lot colder. The view from the roof of the observatory was unbelievable. Words or even pictures cannot begin to do it justice. All around, there were images of mountains that were so beautiful, they looked artificial. It was an incredible feeing of awe to take in all that beauty and majesty. On the way back from Mount Washington, we saw a moose by the side of the road! Julia was hoping to see one this week. Finally, Julia got her weekly 30mg of Methotrexate tonight. It went pretty routinely; she complained of a bit of discomfort as the medicine was being injected, but it passed momentarily. Friday July 30 This is our last full day on vacation. We decided to go to Attitash Ski Area and try out their Alpine Slide and since it was a very hot day, the Waterslides. It didn't quite work out that way, though. We arrived in the mid-morning and decided to try the Alpine slide first. You wait in line for a while, then you ride their Flying Yankee quad chair lift to the summit (which is a beautiful ride in itself), grab a sled and wait for your turn on one of the two concrete tracks. I rode alone, and Julia rode with her mom. Unfortunately, we got in line behind an older lady who took the slide at what can only be described as an agonizingly slow pace. We waited an hour for this!? It was frustrating and disappointing, to say the least. We tried again. This was a little better, we got most of the way down this time before getting behind a slow poke. Julia rode with her mom again, and they were both uncomfortable because the small size of the sleds. We broke for lunch (with Julia having to endure more insensitive comments about her "sunburn"), then decided to try one last time, this time with Julia on her own sled. We got in line, and we were next to go through the gate, when there was a rumble of thunder in the distance. The immediately closed both the Alpine Slide and the Waterslides. The storm was causing some rain just 2 miles up the road, but it just brushed by the ski area and gave us just a sprinkle. They dried the track (which consisted of staff riding it with cloths being pushed by the front of their sleds) and then reopened the ride. We were the second group in line, so we got on the lift almost immediately. About halfway up, there was another rumble of thunder and they closed the slides again- but since we were already on our way, they let us go! This time, we had the track to ourselves. Julia rode by herself and she did a great job!! It was a wild ride, and it was a lot of fun. It was by now the middle of the afternoon, we were hot and tired, and they had just closed the slides. We decided to call it a day. Since the slides were closed when we left, they gave us a "raincheck" to come back another time. We went back to our townhouse and splashed around in the pool there. Saturday July 31 Time to pack up and go home. We did decide to use our Attitash rain checks, though. We packed a change of clothes and dressed in our bathing suits. We went back to Attitash and spent the whole morning on their two waterslides. One is called the Aquaboggen, where you ride down one of three water slides on a neoprene sheet. These slides are very fast! The other is called the Sidewinder. This serpentine ride required you to ride in either a one-person or two-person inflatable tube. This ia also a very fast slide, but you never feel very out of control on it. We left about noon, stopped at a quaint restaurant called Big Bear's Place with a, you guessed it, Bear theme. Nice place. After that, we had an uneventful ride home (best kind). We really came home from this vacation feeling like we did plenty of fun stuff, but never rushed or pressured to do more stuff. Just your basic relaxing vacation.
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Updated August 2, 1999
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