Nurse Karli had given us an avatar—Captain Chemo—the hero medicine that would take Emily’s cancer away.
After Nurse Karli left, Emily didn’t want to draw or read. I could see that the wheels were turning in that little head of hers. Through Captain Chemo, she better understood what was up ahead, and she was thinking that through.
The setting sun hit the woods across the parking lot at a low angle, sending broad shafts of light through the trees. I wondered what Emily and I could see if we took a look at the woods. There were always moments when I wanted to take her out of this.
“Emily, the forest over there is glowing,” I said, picking up my binoculars. “Do you want to see what we can see?”
Kari helped her get to her feet and I steered her IV pole. When we got to the window, she took the binoculars and put her elbows on the windowsill to steady her arms as she scanned the woods.
“Daddy, there’s a flock of turkeys running through those trees, and a squirrel! He’s really fast up that tree,” she said.
“Really?” I said. “Let me see!”
I crouched alongside her, and she offered me the binoculars. I saw the turkeys, and that gray squirrel going down a tree, and then up again. I handed them back to her.
When she put them back up to her eyes she gasped with joy.
“Daddy! I see a butterfly!” she exclaimed. “Even from all the way over here, I can see the butterflies in and out of the trees.”
This was why I’d grabbed those binoculars. To show her that life outside this room was what we were aiming for, that that’s what we wanted to get back to, going outside and doing things again. She had to know, and she had to see, that there was a world waiting for her outside this hospital room, and the world needed her in it.
Chapter 3
PLEASE PRAY FOR EMILY
It’s scary being home. I feel like I need to disinfect the entire house so she doesn’t get sick. Then I started worrying that the Clorox disinfectant I was using on the countertops was probably toxic and causes leukemia. I’m wondering if I should throw out all my cleaners and buy all-natural products. Then I gave Emily strawberries and worried that the pesticides used on them probably caused leukemia, too. I think I’ll go to Wegmans tomorrow so I can stock up on all organic food.
—Kari’s journal
June 5, 2010
After a week of chemotherapy, we brought Emily home, and it was amazing to watch Kari in action. She disinfected the house, bought all organic food, and made a master medication schedule and a chart to record Emily’s temperature fluctuations and her daily routine. Before we left Hershey, Emily had a PICC line (peripherally inserted central catheter) inserted into a vein in her right arm to make it easier for her to get IV medicines and blood draws. We had to make sure that the insertion point in her arm didn’t get infected. Kari was determined to notice any signs of infection as soon as possible.
That was why, after the joy of homecoming, we started to miss the security of the hospital. At Hershey, nurses swept in and out of the room to check on Emily, to adjust something, or to administer medicine. We never had to worry about Emily’s pain because all we had to do was mention it and the nurses would make her comfortable. Nor did we have to be concerned about making it to a doctor’s appointment. Now all of that fell on us, and we were anxious not to make a mistake.
Normally our house is full of visitors, with Emily’s cousins dropping by and the other members of our families coming for dinner. We are very close with our families, and we already missed them. The fact that Emily could not see her cousins and that we had to restrict visitors was sad for her—for all of us, really.
A few days after we settled back in at home, I could see that Emily was discouraged, and it upset me. Since we needed to protect Emily from germs, the only thing I could do with her was drive by her cousins’ house so she could see them out the car window as we passed.
She was excited to get into the car. I could see her in the rearview mirror squirming higher in her seat to look out the window when we turned onto the street where her cousins Ryan and Jeremy lived. She got a big smile on her face when we pulled up to their house. They knew we were coming and had been watching for us through the window. They rushed out, pounding down the front steps. I stopped the car for a few minutes, watching as Emily held her hand up to the window so that her cousins could hold up their hands to bump fists, as if they were giving her love through that pane of glass. I saw how her smile collapsed into sorrow when we had to pull away from their house, only reinforcing that so much was different since she got sick.
At home, the financial reality of our situation hit us. Although we had good health insurance, this was going to be more expensive than we could even imagine. The hospital bills and explanations of health benefits kept arriving in the mail, some of them dozens of pages thick, stuffed into large envelopes that we didn’t want to open. It took all our energy just to make sure that Emily was doing okay. We both always wanted to be with her, but to keep some money coming in, we agreed, we’d each work part time. The heartfelt piece of this was how our community was starting to respond to Emily’s
