There's No Place Like Home (D+23)

"The ache for home lives in all of us, the safe place where we can go as we are and not be questioned." - Maya Angelou

Elise's condition continues to improve rapidly. Her absolute neutrophil count (ANC) continues to climb and passed into the "normal" range on Sunday morning's lab results! This is an important marker that they watch closely because it's a strong indicator of her ability to fight off infections. She's now able to leave her room and on Saturday we got a pass to go to the movies and yesterday we visited the apartment for most of the afternoon. Elise and I both watched perplexed (wir sprechen kein Futbol) as Germany and Argentina battled for the world cup.

But she's still in the "inpatient" status meaning she has to stay overnight at the hospital. There are still some immediate things that are being watched/worked. She needs to transition off the IV nutrition and back into the mode of feeding herself for all her calorie needs. Her weight is down about 10 lbs since she started the journey, but it seems to have bottomed out and is gradually climbing again. She has very little sense of taste and some foods she used to like don't taste good right now (chocolate doesn't taste good - say it isn't so!) And the IV nutrition dulls her sense of hunger. With those two combined it's hard for her to feel like eating, but she's working on it.

The GI problems she's really suffered with seem to be on the mend. She doesn't have pain anymore. In fact they've completely removed the morphine pump, both basal rate and PCA (the on-demand button). Now they'll just give it to her IV if she needs it, which she hasn't over the past few days. On the GI front, the better news is that the frequency of needing to use the bathroom has significantly dropped off. The urgency is still there, but I'd say frequency is back down to pre-hospital status. Of course pre-hospital status wasn't good given that she had colitis, but the current situation is way better than a week or even a few days ago. If she wasn't in a hospital (where they wake you up to see if you're sleeping okay), she might even sleep through the night.

The lagging marker is the platelet count. Platelets help your blood clot when you bleed. I'm told they are one of the last to recover. This count seems to be on the rise. Her platelet level is and has been high enough to prevent bleeding for quite a while. She only required one transfusion after the transplant when we'd expected many more. From what I've read there is a strong correlation between long term transplant success and the timely recovery of the platelet levels. The magic number is 50 within 30-60 days post transplant. Elise's counts rose into the 40's yesterday, so that's looking good.

The Drs are trying to stabilize the level of the immunosuppressant drug sirolimus in her blood stream. The use of a immunosuppressant is counter intuitive. It's used to prevent graft vs host disease (GVHD), essentially helping to prevent rejection of the transplant. Sirolimus dampens the activation of T Cells which reduces the body's immune response. Sirolimus is very hard to get leveled out so they take a blood sample each day and adjust the dose. She'll be taking this med for a long time, so getting the dosage leveled out is important if you don't want to visit the hospital every day. It seems like they are getting closer to the right level for Elise as the day to day variation seems to be narrowing down.

Now that Elise is feeling much better she's starting to get lonesome for the companionship of other kids. There aren't many in the hospital (a good thing!)We'll have to figure out how to counter that as we've still got a couple months here in MD before we can come home at day D+100.

So this week we'll be trying to get Elise released to outpatient status while continuing to watch for GVHD to rear its ugly head.

Thanks for the continued cards and letters. Elise enjoys them, even more so now that she's less distracted with medical complications. Being a teen, I think she like the text messages just as much.