It's Too Nice To Be DC In August (D+65)

"The secret of happiness is to count your blessings while others are adding up their troubles." - Unknown

Time is moving right along. We're now at transplant + 65 days! It's hard to believe. The last week was medically uneventful. Elise had a few appointments and lab work a few days, but nothing much to report. She's taking drug called Sirolimus which is an immunosupressant that is intended to help prevent graft vs host disease (GVHD). Getting the level of it in her blood just right is very important and we've been adjusting her dose a bit this past week, but other than that there hasn't been much.

One of the outward side effects of the palifermin (which was used to reduce the duration and intensity of mucositis) was a darkening and then peeling of odd patches of skin. It was almost like getting a sunburn. But in some off places (like the arm pits). The exfoliating seems to be mostly done now. It looked worse than I think it felt - she didn't much complain about it except just before peeling. But if you're ever going to need this med it's a side effect they didn't say much about.

Overall Elise is doing great. We've been taking walks and doing some tourist things. We had a great visit with friends in Haymarket, VA on Saturday. It rained a bunch on the way out there but the payoff was Sunday morning. When we woke up it was cool (60's) with patchy clouds. So we decided to do a walking tour of the major monuments in the national mall and tidal basin area on Sunday. It was an awesome day and our feet got a real workout.

This week holds more tests and appointments, but nothing significant is planned. If the schedule holds we've got about 5 weeks left here in the DC area. Becky's birthday is coming up so we've got a little trip planned to Ocean City. We're thinking about swinging south on the way home to hit Jamestown as a "field trip" since they're studying early US history in Elise's history class. We're also looking at other short trips to take advantage of being out here, but we've got to fit them around appointments, tests and school.

Just Keep Swimming (D+58)

“Take the first step in faith. You don’t have to see the whole staircase, just take the first step.” - Martin Luther King 

It's hard to believe were already at 58 days after Elise's stem cell transplant. She's made it a full week as an outpatient - Woo Hoo! Just six more to go and then we get to come home. During that time they'll be watching for infections, graft-vs-host-disease (GVHD) and VOD.

Things are going really well. Elise has blood tests at least once a week so they can track the recovery progress of her new immune system as well as monitor the levels of some of the medications they are giving her. All her medications are oral and that's so much better than multiple times a day IVs. All the signs so far have been positive.

She had a follow-up eye exam this week. After the chemo conditioning for transplant her eyes weren't focusing as well as a typical 13 year old. The Dr had said it was pretty typical, but that it would come back. And sure enough, she's back to 20/20. She proved it by reading "The Giver" in 2 days before seeing it in the theater this weekend.

NIH has a couple teachers on staff through the local school district and Elise has been working with one of them most of the summer. School started at home last week, so Elise "started" here as well (although we're waiting on the study guides from the teachers at Murray). We have her books and some informal guidance from her principal so she's started on that. We hope she doesn't get too far behind.

We've been trying to take advantage of the local area. We visited the Baltimore "Inner Harbor" area and spent some time at the National Aquarium that's located there. We also took a harbor cruise. Today we went to the National Museum of the American Indian and also the Air and Space Museum.

So we'll continue on with this routine for a while. Kinda boring, but that's definitely better than the alternative. Becky and I are taking advantage of the gym in our apartment complex and the weather has been nice in the evenings, so we've been able to go for walks and sometimes eat dinner at restaurants with outdoor seating which we both enjoy.

Halfway Home (D+50)

"Believe you can and you're halfway there." - Theodore Roosevelt

I can't quite believe it, but Elise is halfway through the "100 day" transplant process. For almost all patients, the first 100 days after transplant is when all the most important stuff happens. It's also the length of time we are supposed to stay in the area of NIH.

Elise was formally discharged AGAIN from inpatient status just before midnight on Friday. She finished the 14 day course of IV antibiotics that were required when her central veinous catheter became infected. She's doing great now, plus she has no more IV lines hanging out of her arms or chest. She was able to take the first bath without having to worry about keeping some body area dry. A very big deal!

I was a little worried because she's had some growing sinus congestion and she had a little dry cough on Friday morning. I was concerned she might have picked up a virus since she doesn't wear her mask as diligently as she could. [The medical jury is out on how much and when its required - some are very conservative and others less. Elise chooses to listen to the less conservative voices and then improvise.] The sniffles are minor, but so were the symptoms that turned out to be the start of a blood infection 2 weeks ago - so better safe than sorry. But they ran a test Friday and she didn't turn up positive for any of the typical viruses, so it's probably just allergies or the constant in/out from humidity to air conditioning.

In any case, to celebrate her discharge and completion of the IV antibiotics, everyone slept in. Kinda anticlimactic but when you have to be at the hospital for treatment starting at 11pm and then again at 7am the next morning for 2 weeks straight, then sleeping in is a celebration. After that wild partying, we went to the "Chinatown" area of DC, visited the Smithsonian American Art Museum, and then walked down to the National Gallery of Art where they are having an Andrew Wyeth exhibition (which was really cool). It was a really great day.

Going forward Elise will be seen at the outpatient clinic twice a week. She'll continue to have blood tests to make sure things are going well and they be poking and prodding her for other stuff I'm sure. There are medications levels that need to be watched closely but mostly in the first 100 days they will continue to watch for the big 3: infections, GVHD, and VOD. 

Elise will also start "real" school this week. The school district in Ridgecrest starts this week and Elise needs to keep up. We have all her books for this year and NIH has a school room and 2 teachers to handle this sort of situation. So the tentative plan is that Elise will visit the teacher for lessons a couple hours a day. We'll see how this goes and adjust as necessary.

We're planning some sightseeing day trips, but our leash is pretty short due to school and appointments, but I'm sure there will be good opportunities. Elise is excited about going to the Montgomery County Agricultural Fair this weekend. I just hope they have deep fried butter and chocolate dipped bacon...

Whos' Who In the Zoo (D+45)

"An optimist is someone who gets treed by a lion but enjoys the scenery." - Walter Winchell

I'm happy to report that very little has been happening. Elise is still getting IV antibiotics every 8 hours and this will continue through Friday. This is the follow-up to the S.Aureus blood infection she got from the venous access catheter she had that was used to draw blood, give meds, etc. The every 8 hours schedule is a significant hassle since it takes about 30 minutes to get to NIH (one way) and about 45-60 minutes to complete the IV infusion. so that leaves about 6 hours between infusions. Elise goes to bed about 12 or 12:30am and has to get up at 6am to make the 7am dose. She naps for a couple hours after the morning dos and Becky and I swap off the late and morning trip to NIH (I prefer mornings).

There have been other things going on. Elise has class most days for an hour. There is a teacher she meets with at NIH. That will transition to more time after school starts in a week. And today she needed to get her IV replaced. The technician on the wing tried first but couldn't accurately place the vein (ouch!) so we had to go to the VAD clinic where they use ultrasound imaging to direct the placement (ouch x 2).

Hopefully when the course of IV antibiotics are done we'll be able to transition to only once daily Monday and Thursday visits to NIH for labs and visits with the medical staff. We're crossing our fingers.

This past weekend it was overcast and cooler than normal on Sunday so after the morning IV we went to the zoo for a few hours. Then Cheesecake Factory for a late lunch (then to NIH for afternoon IV dessert). Elise needs to avoid the sun because some of the meds make her susceptible to sunburn, and also sunburn can trigger GVHD (or at least some literature says that).

In general Elise is doing well. She's eating well, gaining weight back, her energy is up, and her hair is clearly growing back (although that will take many months).

We're inside the 2 month to go mark and counting down.