Life at Home - One month anniversary

It's been a month since Lila's initial diagnosis. We now regularly say things like vincristine and cc's (as in, give me 3cc's of Bactrim). We have advanced opinions on the operation of our feeding pump. And we have an IV pole in our house.

We've spent about 3 weeks in the hospital but have been home now for a week. It's surprisingly difficult to keep this blog updated while we're at home. Just so much going on. But Lila definitely prefers life at home.

Her sleep schedule is a mess, which means ours is too. Grabbing naps whenever we can. She keeps asking to go sit outside at crazy hours. Once even in the rain. The request is beyond reason and it's best to comply to avoid the inevitable tantrum. I guess we're operating in survival mode. Even big sister understands that sometimes it's better just to hand over the special Tinkerbell mug than face a 2-hour tantrum.

But most of the time Lila is sweet and lovey. She hands you the end of her feeding tube when it's time to take meds. She even helps push the plunger on the syringe.

Good news is that she's almost completely off her pain meds from the initial surgery and tumor pain. Less exciting news is that her next BIG dose of chemo is this Thursday, and that comes with 10-12 days of side effects. We'll be watching her closely to make sure she's comfortable.

We're getting all kinds of excellent advice and encouragement from my former classmate Marianne whose young son Hugo is nearing the end of his long course of treatment. Chris and Marianne are better about updating their supporters than we are: GO HUGO!! (And they sent us a gift card to Plated! I mean, guys, you're too kind.)

It's hard to get pictures because she won't sit still. Here she is building a castle from blocks. And below that a few shots from a special delivery of handmade friends from the Professional Bohemians.