Nearing the End of the Beginning (D+90)

"There will come a time when you believe everything is finished. Yet that will be the beginning." - Louis L'Amour

Wow time is flying by. It's day 90 after transplant and all seems to be going very well. We've been told that if everything remains stable then Elise will be released to return home early next week which is a few days early! We're all real excited at the prospect of getting home.

There isn't much medically to report. They've tweaked some medication dosages based on the weekly tests she has, but everything seems to be going as the medical team would anticipate. Elise did start having the sniffles and a dry cough just about the same time as the D68 entrovirus hit the news, so they ran some tests and decided she just had a normal head cold. She's still a bit congested and coughing a little, but it only seemed to slow her down for a day.

One thing you might notice in the picture is that Elise started to lose her eyebrows. Chemo and radiation affect the fastest growing cells first. I guess the eyebrows grow more slowly. She hasn't completely lost them, but they are definitely much thinner. But they'll grow back just like her hair. The hair on her scalp is now light colored and about 1/4+ inch long. She's finally able to kid me about being bald without me being able to turn it around. I do still rub her head "for luck".

We've made arrangements with Children's Hospital LA for follow-on transplant care once we get home. Elise will need to see a transplant Dr weekly for a while and then it will scale back until we hit the magic 1 year mark. At 6 and 12 mo she'll need to come back to NIH for short visits. After that it's once per year until she hits the 5 year mark.

We're trying to make all the arrangements required to move out of our apartment. Most things are easy, but getting rid of the furniture has turned out to be more of a headache than I'd anticipated. Who knew that it would be so hard to get furniture picked up? But we couldn't expect everything to go smoothly.

Elise has been visiting with the teacher daily. They've been trying to get a little ahead on the math coursework so that she starts back to school even with her classmates. I'm not sure all the other classes will go as well (she hasn't been practicing the flute much at all), but then we asked them to concentrate on math since its so hard to catch up once you get behind.

Around the edges we've been trying to take in the local sites. We finally made it to the Bureau of Engraving and Printing and we hit an Art Fair in Alexandria last weekend. The weather has gotten really nice. Hopefully it's cooled off in Ridgecrest when we finally get there.

We're considering hosting a Welcome Home for Elise after we return, so if you're interested please keep watch for an announcement.