We are getting ready for a long day at CHLA tomorrow. Lauren has her MRI at 9 am. Afterward we will go straight to the day hospital to start her chemo and then we'll meet with Dr. Finlay. I think Lauren will be getting her monthly dose of Patamidine via IV tomorrow, which prevents pneumonia. We think this is the cause of her getting sick during her chemo treatments. The last time she had Patamidine she got sick, but she didn't get sick during her last chemo when she didn't get it. If she does get sick we may ask to change her medication. I think it comes in a pill form that she can take twice a week.

As I always say before each of her MRIs, this is the most important MRI yet. While there is a bit of a routine when Lauren goes in -- I go get breakfast at McDonalds (which is down the hall) and read the newspaper, Hilary stays in the waiting room and plays Lauren's Nintendo DS -- it's never routine. I can not ever imagine the day these MRIs become routine. The waiting is tough. Waiting for her to come out of the MRI and being called by the receptionist (she is not the friendliest or very empathetic), waiting for her to wake up, and the waiting for the results. But even harder than waiting, is keeping the mind from wandering and keeping all the bad "what if…" thoughts out. I find that my mind wanders the most during the hour and half that Lauren is away from us while she gets her MRI. I always feel so much better when we are finally back by her side.

Heartbreaking moments:

- Lauren told me that when she looks in the mirror, her face and tummy looks fat and her arms looks big. She asked if they'll ever get smaller again. We never comment about her weight in front of her. It was bound to happen sooner or later as she gets older and more self aware. I wish there was a way to get her off her steroids. I'll bring it up with Dr. Finlay again tomorrow when we see him.

- I asked Lauren if she plays with the kids at her school, she said, no, she usually just sits by herself or colors. I know it's not because of the other kids because I know they ask her to play all the time. It's tough because she doesn't want to run around because she is afraid of falling and she doesn't want to play dress up, because nothing fits her. We want to encourage her to socialize, but don't want to make it a big deal for her. Basically we're not sure what to do about it.