Thursday, February 12, 2015

Quick update

Hey all! Been a few days but right now we're waiting on some of Lila's bodily functions to return to normal before we can be discharged. It's possible we could go home today (Thursday). 

She did have a BM yesterday, which is a very good sign. She also ate a huge dinner on her own. We're pushing fluids and really hoping she doesn't need a nose-tube for feedings. She would not enjoy that. 

One complicating factor is that our patient is 2.5 years old and this age is very concerned with doing things their own way. Control is in short supply when you're in the hospital. 

This morning she had a huge freakout over feeding Froot Loops to mommy. She was thrashing and yelling and trying to crawl out of bed. The upside is that she got mad enough to walk herself around the room, which she was reluctant to do before. Call it anger therapy. 

So many unknowns in the coming weeks. We've never been through chemo with a young kid. How will that make her feel? How much should we isolate her from the "outside world" while her blood counts are low? How do we make sure that big sister knows we love her too, even though we'll be devoting a lot of attention to Lila?

Fortunately we have some great friends who have walked this path ahead of us, and they are willing to share their wisdom. (Did you know you can fry their Cheerios in butter to increase the caloric value?!)

They say having a baby is simultaneously the biggest change to your life and the most normal thing ever (happens thousands of times a day around the world). Having a child diagnosed with cancer is similar. On the one hand, this is a big deal for the Duncans. On the other hand, there are 20 kids on this same hall and thousands of families in Nashville who are living with cancer. It's a landscape you don't usually see until you're participating in it, but I read that 1 in 250 kids will be diagnosed at some point. 

I have some weird ideas of how to serve families during the acute phase of treatment. I may share those soon. 

We are so grateful for you. For our friends. Family. Nurses and doctors. Our home team. Even if you're "only" praying or sending positive vibes, it all accumulates into a great web of support that's really humbling for Sarah and me. We will never be able to properly thank you. 

Look at this smile. Lila loves stickers. 

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