Friday, January 16, 2009

Day 1 & 2

Wednesday, the 14th was admission day to Duke. Lila had surgery to place her central line (a tube in her chest that they put all her drugs through) and then we were admitted to the transplant unit which will lovingly be referred to as 5200 from now on, so take note.

Looking good in dad's hat.

5200 is a closed unit which basically means you have to go through a set of doors, put booties over your shoes, and wash your hands for at least 15 seconds before you can go on the floor. They have strict rules about pretty much everything because the kids are at such a high risk for infection. We moved Lila into her room and met a ton of people that I am sure I will have to meet a dozen more times before I remember who they are.
Thursday they started her chemo. I may have cried, I can't be sure. She does three days on Carboplatin and then three days on a combo of Thiotepa and Etoposide (look it up). The Thiotepa requires Lila to take a bath every four hours (around the clock) for the 3 days she's on it and then 1 day after. If she doesn't bathe, the chemo will burn her because it's secreted through the skin--hey Valerie, how's this for "more upbeat"?

This hat was a gift from the grandma of one of the other patients

We are adjusting to life on 5200. Lila is doing the best out of all of us so far. She loves people in her room as long as she knows at least one of them. She loves to ride the wagon up and down the hallway. She loves speech therapy (aka: eating). She hates physical therapy (aka: exercise). Her awesome attitude is making this easier for me. Aren't I supposed to be making things easier for her?

She has to wear a mask when she leaves her room. I thought it would not go over well. She proved me wrong.


lindsey said...

Darren and I were both checking blogs and he said "this breaks my heart a little" and I turned around and we were both reading your post. That smile is priceless.

I said "that's one brave little girl". And Mom and Dad too.

We wish you all the best and love from Scotland.

Michelle Judd said...

So I had no idea you had a blog. Thanks for the update. I think about ya'll constantly. Lila is so stickin cute! Hope you had a good day off today, I'll bug ya later. Love ya'll.

Shiloh said...

We have to bathe Andy every 4 hours as well. If he doesn't bathe, a stink will burn our nostils because it too is secreted through his skin.

Valerie said...

That picture where she's wearing that absurd hat, is Lila sitting up on her own?

p.s. I don't appreciate your sass...but I do appreciate your ass (that's what I'm talking about when I say "more upbeat").