Seriously...

Well, maybe I am the last to figure this one out, but nothing in life goes simply (see last post). The one thing I have learned, however, is that God's hand is in every detail of our lives and He cares for us immensely. As I said in my last post, we headed to NIH, with a snowstorm impending. I prayed during much of the flight to Baltimore, that God would hold off the snow just long enough for us to land. And He did. We landed just as the sleet was beginning to turn to snow. Then the adventure began. We had just missed the shuttle to NIH(I knew we would, due to the timing of the arrival of our flight). So we sat and waited for the next shuttle, which was due to arrive two hours later. Meanwhile we watched the snow pile up, the airport stop all outgoing flights, and people start to fight for cabs and hotel shuttles. Still waiting, we started making phone calls to make sure the shuttle was in fact coming. It wasn't until several hours later that NIH confirmed that the shuttle had stopped running. Cabs had also stopped running by that time. Emily and I went to sit at a restaurant while Justin tried to track down a rental car. He was able to get one, but got horribly lost trying to find his way back to the arrival area (the GPS he had paid to rent was not working). We waited, and waited, trying to help Justin find his way back with a very simple map of the area. Finally, after 7 1/2 hours of hanging out at the airport, Justin and Emily and I found ourselves together, out on the road. We made it to NIH about 1 am and checked in to the Children's Inn.

First thing Thursday morning, Emily had bloodwork, an ultrasound of her abdomen and off to see the doctors. All the while I was praying that all the doctors had made it in to work, as schools were closed and power lines down. Sure enough, everyone was there! We spent quite a bit of time getting them the information from our doctors here (six months worth). There is a such a large difference in opinion in the medical field, what some doctors still consider in normal range, others do not. Overall, they are very pleased with the changes in Emily's numbers. Her triglycerides are coming down, her insulin is so low that there is nothing to measure, and her liver is smaller. Her liver enzymes are up again, but they say that they can fluctuate (they did not think the amount of fat still in the liver was "normal" yet). The main concern is that there is still blood in the urine, despite the medicine she is on. The goal is the figure out why the blood is there, so we have to have some specialized bloodwork done (they wanted to do more while we were there, but Emily had already had blood drawn twice this week and we felt like that was enough). They were more concerned than the oncologist with a particular lymph node under her ear. At this point they are ok just watching it. They are tremendously thorough, and really spend plenty of time answering questions. And as we talked to numerous nurses, etc. we heard about everyone else's trips home the day before. Most spent 5-8 hours in their cars, some sitting in one place for 3 hours at a time. It was then that we realized how much better it was for us to stay at the airport, where we had access to bathrooms and food, than it would have been for us to head out on the road earlier in the evening. Our trip only took 45 minutes or so and the roads were reasonably clear. So all that to say, we are home, safe and sound, having seen God work in our little trip. We will head back to Maryland in July, then hopefully just once a year after that (next time we plan to rent a car and try and see some of the sights). The medicine should be approved by the FDA by the end of the year and hopefully available to doctors after that. The potential is there for us to not have to keep going to NIH, though the doctors will continue to be interested in Emily's case. We have a week off from doctors, then we see the kidney doctor and neurosurgeon on the same day the week after. I guess the most simple thing to do is just take one day, one challenge at a time, and PRAY. 1 Chronicles 16:8 says, "Give thanks to the Lord and proclaim His greatness. Let the whole world know what He has done."