Piper lies in the bed next to me, asleep.  The sun has slipped through the blinds, and I can see her face next to mine.  Her hair is tucked neatly under her cheek.  Her long eyelashes lay motionless like so many blades of cut grass.  Her lips are content, and soft, and everything about her is innocent.  I concentrate, trying to absorb the moment so I can call on it when I need to remember her.

She doesn’t look like she has cancer.  She doesn’t look any different than she did six weeks ago, when the doctors said her tumor was stable.  What she looks like is beauty.  Like she could wake up at any moment and I would know she never had cancer.  Like it was just a bad dream, one where I wake up and hug her a little tighter and then quietly think about the close-call that didn’t happen.  About the wisdom of learning how much I need her without having to feel the pain of losing her.

She stirs and grabs my hand, squeezing it for a moment before letting me go.  I cry because I’m happy she’s still here, and afraid of when she isn’t.  I cry because it’s not a dream.

*          *          *

Ten days ago, we were at Sea World eating breakfast with the orcas thanks to the amazing people at Brave Young Hearts.  The next day we walked through the San Diego Zoo looking the wrong way through binoculars and trying to find pandas.  We laughed in the breeze at the sea lions in La Jolla, then ate ice cream with too many sprinkles in Legoland.  We had fun, and Piper seemed okay.  Like we had reason to believe she would be ours for a while.

But two days after we returned to Colorado, a routine MRI revealed that her tumor is growing rapidly and has spread to her cerebellum. The doctors advised us to stop giving her the chemotherapy drugs we thought were working, and which we fought so hard to get.   They used the word “progression,” which every DIPG parent fears.  “Piper’s tumor is progressing, I’m so sorry.”  “She’s in progression, so we’ll see if there are any clinical trials she might qualify for.” “Because her disease is progressive, you can expect another 1-3 months.”

I wonder when they’ll find a better word.  Progress means to make things better, and none of that is happening.  There is not a single curative treatment option for children with DIPG.  No drug has ever been identified that can slow it down. And all of the clinical trials are Phase I, meaning they’re not even aiming at efficacy.

We’ve elected to give Piper 10 more radiation sessions and re-start her on Avastin in the hope it will give her more time.  So far, they’ve been the only things that have helped her. Regardless, there’s nothing else out there with greater promise.

As I watch her sleeping next to me, my heart aches with how perfect she is, and how I cannot feel whole without her.  It aches with how much she deserves better.