Resilience

Yesterday was Hope's 7th time in the operating room - her 6th lumbar puncture - her 5th dose of vincristine  and her 2nd dose of peg-asparaginase - and the 5th time they have accessed her port. Each one of these things is more than a kid should have to handle. It's more than I can handle, and I'm just watching. But Hope has gotten to the point where after all of that and six hours in the hospital, she puts down the iPad and marches (literally) down the hall to the clinic playroom, with me chasing her after her with the IV pole.

The night Hope was diagnosed, a nurse in the ER was trying to get an IV into Hope's arm and, not surprisingly, Hope was wailing and putting up a fight as we tried to hold her still. The nurse commented that what made her sad was when the kids stop fighting because they get so used to be poked and prodded. At the time, I was put off by this. Didn't she realize that Hope was entering that world? That soon, Hope would be the one so used to pain and discomfort that she would give up fighting?

I thought about that moment on Wednesday as we sat in the pre-op area. Hope is getting used to it. She only resists a little bit when I hold her arms so her nurse Lisa can access her port. She sits on the operating table as the anesthesia creeps through her line and lets me lay her head down on the donut pillow. She purses her lips to ward off the oral med coming at her, but then acquiesces and swallows it down. It makes me a little sad that she's getting used to it, because no one wants their child to have to be used to these horrible realities, but it also makes me weirdly proud that she is so resilient.

At the end of our clinic visit, she puts on her little mask and says goodbye to each nurse and tech she passes, and giggles her way to the door. How does she do it? She lives each moment - and I'm trying hard to follow her example.

Today's glorious weather was matched by Hope's mood. In the late morning, she announced that she wanted pizza at Frank's - our favorite pizza place near the big kids' school. With a mildly better ANC (590, yesterday), she put on her mask and climbed into the car. She was so happy to be out and about. She ate the crust off of two slices and then came home to amaze her physical therapist with the progress she's made in the last week.

Then just before dinner she followed Quinn and Celia outside to play with sidewalk chalk and race up and down the sidewalk on the scooter. Her hopscotch performance was astonishing.