Moving Forward (D+12)

"March on. Do not tarry. To go forward is to move toward perfection. March on, and fear not the thorns, or the sharp stones on life's path." - Khalil Gibran

Last night was my turn to spend with Elise. As you could tell from the D+11 post it was a tough day and I wasn't sure how the night would go. I anticipated more of the same. But Elise surprised me.

They've added so many different IV meds and they take so long to administer that we didn't turn off the lights in the room till about 11pm. She was actually doing very well so I hoped she'd get some sleep which she did. She managed to get a few 1-2 hours stretches of sleep during the night. It's difficult between the need to go to the bathroom and the frequent night time vital checks and medication administrations. But overall it was a good night.

Unfortunately, the morning didn't go so well. The intense spike of pain she'd experienced the past couple days came back to visit for and hour or so. But it passed, and eventually they decided she could use a local anesthetic to help the spike in pain rather than a higher dose of morphine. This seems to be helping and overall I'd say the day went better than the last few.

The pain management Dr came by and went over the pain med administration. It's all computerized and they can see when Elise requests it via the Patient Controlled Analgesic button. Based on their data he thought things were getting better because Elise only requested 1/2 the meds she had the day before. Elise and I both agreed with him. So if they can manage the localized pain in her posterior then things should get significantly better. We should know if this has worked out tomorrow.

As I mentioned they are changing up her meds to make sure they get good coverage and keep any lurking infections at bay. None of the cultures have come back positive so far, so that's a good sign. And today she didn't run a fever all day - another good sign.

The lead Dr came by in the early afternoon and said Elise's white blood cell count was up for the 3rd day in a row. I'm not sure about the units, but it was 0.38 today, more than double the day before. This is a real good sign, good enough that they decided to run a DHR test which would show definitively whether engraftment of the donor's cells was underway (this test is a somewhat unique signal for conditions like CGD - it doesn't work for say BMTs to treat leukemia). The test is specialized, it's not one you just order up on a whim. This was a day or two earlier than scheduled which I took as a good sign. They had discussed putting it off until after the weekend because the normal day to run it would have been Friday, but it will be a holiday (4th of July). Unfortunately the results didn't come back before everyone left for the day. So we won't know till tomorrow.

The most accurate sign that Elise is doing better wasn't technical at all though. First she was walking around the room for a little while balancing a small "Toothless" figure (from How to Train Your Dragon) on her head with a big smile on her face. Next, I found her checking out the way her new haircut looked in the mirror. She hadn't cared much in the past few days. Becky has her own signal she's looking for, but I won't give that away.

So while there were some rocky parts today, in general I'd say things were better on the whole than the past couple days. Hopefully this will become a trend. But I know that, even if things go perfectly, there are still some rough patches still ahead. And I'm told nothing ever goes perfectly. For example even if things go really well, when the white cells grow back in earnest they say she'll have some issues because they'll try to mount an immune response to the damage in her mucosal system. But if these are steps towards the cure, we'll deal with them. Elise is one tough young lady.

Thanks to everyone for the cards, letters and gifts. Elise likes reading what people have to say even though she's a bit embarrassed by the attention. We've been creating a wall covered with cards after they are read. It's a lot nicer to look at that the white hospital walls.