Monday, January 19, 2009


Lila had her feeding tube removed yesterday so they could start the Thiotepa. She can't have any tape on her body during this chemo, because she has to have head to toe baths every four hours. It is nice to see her without that stupid thing coming out of her nose.

She seems pretty pleased about it as well.
And no, I don't know why these pictures are so small--I can't seem to get them any bigger than this. Sorry.

We have moved to the hazmat stage of our hospital stay. Lila is basically toxic (Kimmy has taken to singing the Bel Biv DeVoe classic "Poison" to her whenever she can). Anyone who touches her has to put on a white gown and "chemo" gloves, which are just heavier duty latex type gloves. Every four hours we have a routine that goes a little something like this:
1. bathe Lila
2. listen to her scream
3. change her bedding
4. listen to her scream
5. put masks on
6. listen to her really scream
7. change her dressing (central line)
8. put new clothes on
I actually got some pictures of her not screaming, so I thought I would share those.

doesn't yet know what's happening

realizing it's bath time

I think someone told a good joke

This part will be over on Wednesday afternoon--Huzzah! There isn't a ton to report, which is actually really excellent news. Her doctors say she is handling everything wonderfully. She is happy and smiling and playful as long as the nurses aren't pissing her off. She loves getting cards and big, expensive gifts (she told me to write that).


Nancy Page said...

A nurse in the NICU once told me that the fisty ones always did the best. So, scream on Lila!! Your little family is in our thoughts and prayers.

Shiloh said...

Lila never screams. You don't know her. Tell Yaya that Pete began drooling as we looked at the pictures of her. That's real love I think.

Sara said...

I like reading your blog. Like looks hard but you have a great attitude, you're pretty funny, you haven't changed much in that area. Seeing your "exciting life" makes me even more grateful for my kids when I am in my "I want to give them away" attitude because they add so much more drama to life:) well, just thought I'd say hello.