Jug O' Apple Juice

"If the facts don't fit the theory, change the facts." - Albert Einstein

We all got up early so we could head down to NIH for some more tests this morning. Well I guess it wasn't that early since I'm already on east coast time and the coffee was brewing by about 0530 EST.

In any case we headed down the road a short way (NIH is about a 15-20 minute straight shot down Rockville Pike) to turn in Elise's big jug o' pee and have a few more tests run. She was supposed to collect 24 hours worth of urine and so we'd stayed home almost all day Thursday just for the big collection event.

We got there quickly and through the gate amazingly fast (NIH is a Federal facility so the security can be arduous  they run a bomb swab on each vehicle). We walked to the pediatric clinic and Elise presented them with the "apple juice". Then we had to wait for phlebotomy to draw blood. I thought it was some sort of special test they'd forgotten, but apparently it was (yet another) pregnancy test. They are required to do a pregnancy test on women within 7 days of starting any new category C or above drugs (i.e. risk to a fetus), and obviously some of the medications she's going to get fall into that category.

Next we waited around for a CT scan of her sinuses that had been missed last week. That went fairly quick and we were out of there. We took advantage of the situation and headed to the local wig shop so that Elise could pick out a wig since she'll lose her hair. NIH provided a voucher for $225 towards a wig and they recommend this shop. I was surprised when we walked in, the proprietor was an elderly Asian man - not at all what I was expecting. He was great and had a good eye for what would look good. We don't know if Elise will even wear a wig, but her main Dr suggested we pick something out ahead of time so it wold be available when/if she wants it.

Elise tried on a few and picked one that reminded me of my sister Amy's hair color. Elise was surprisingly into the process of trying them on. I wasn't much help (no surprise there), but the proprietor, Becky and another woman who was in the shop were cheering her on. The woman gave us the phone number of a stylist that trim wigs to best suit an individual.

We got back to the apartment by 1130 so we decided to ride the Metro down to the National Zoo. We weren't there for an hour before they called and said she needed to come back because they'd found something in the CT and didn't want to wait through the weekend (but as usual they wouldn't say what they'd found over the phone).

At this point the news didn't really worry me. Elise seems to be in pretty good health and isn't acting sick at all so it couldn't be that bad. So we arranged a time to meet with the medical staff and spent some more time visiting the zoo before we headed back to NIH.

We got back to NIH at 1600 on a Friday and as you'd expect it was a ghost town. Elise was the only patient in the pediatric clinic (but they still put her in contact isolation). The PA showed up and told us that the CT scan had shown that she had fluid in her sinuses, but as I suspected, she also said that any random sampling of people off the street would show about a 50/50 chance of the same result. So we all waited for the infectious disease specialist to come and make a ruling. Eventually he showed up (he reminds me of Dr Phil), asked Elise about 10 question and said there was nothing to worry about. So no new meds and, more to the point, no delay of the BMT process while they treat a sinus infection.

But it all ended well because we took the Metro back to Rockville and stopped at Gordon Biersch for dinner and (for Becky and I) drinks. Then we walked back to the apartment. It's a beautiful evening, probably one of the last nice evenings for a walk for most of the summer.

So at this point we're clear of any additional tests until Elise is admitted on Wednesday, 4 June 2014. Even then they plan to place the Hickman IV line on Thursday and do a bone marrow puncture, and then she may be released "on pass" for the weekend. The heavy chemo won't start until the following week. Oh yeah, I still need to post the updated schedule. I'll try to do that this weekend...