Those were the fights about medical procedures that had already happened, but there were also fights about things to come. The doctors would tell us they were going to give her an expensive medication next Tuesday, and I would start on trying to get it approved—hour after hour on the phone. “No” was always the first response.
“Well, she has to get it to save her life,” I’d say. “So what do we do to get it covered?”
“The doctor has to send a pre-authorization to us and then it goes to a committee and they’ll decide if it’s covered.”
“Does the committee meet before Tuesday?”
“No, it does not.” So here we go again.
Some days I could feel the stress and pressure building in the room and I knew that was not good for Emily. Often she reflected our mood, and at other times she set that mood with her behavior. Sometimes when Emily would hear these conversations, she would remind me, “Remember, Dad. We need to stay positive and smile once a day!”
On days when I sensed we were upsetting her, I’d suggest we go to the playroom. I wasn’t good at crafts, but we had something else going on, a little father/daughter rivalry at the air hockey table. One way to get her out of a bad mood was to trash-talk with her about how badly I was going to beat her the next time we faced off.
“I’ve been practicing my moves while you took a nap, Emily,” I told her one afternoon as I lamely shifted my hips back and forth, pretending I was the smoothest player known to the world. “I’m going to be an air hockey legend by the time you get better. I’m gonna smoke you.”
“You are not!” Emily said, sitting up in her bed, keen to compete with me. “I can beat you even when I’m in a wheelchair. Let’s go right now.”
“Okay! Okay!” I said, stretching my arms out, loosening up for battle. Then a nurse came in holding two big bags for the IV pole.
“Emily needs these two medicines,” she said, hanging them on the IV pole and then checking them off on her chart. “I’ll start with your antibiotic. And after that I’m going to start your anti-nausea medicine. It will take about two hours.”
“Do we have to do it now?” pleaded Emily. “We were going to go to play air hockey.”
“I’m sorry, honey,” the nurse said softly. “We have to stick to the schedule for you to get better. You can play right after we give you the medicine.”
Emily was frowning, but then her face brightened with insight.
“You know those two medicines are compatible?” Emily said. “You can hook them up at the same time and it will take half as long.”
“I don’t think so,” the nurse said, as she connected the first bag to the IV line. “But let me go check.”
The nurse returned to the room with a big smile on her face after consulting with the other nurses down at the nurses’ station.
“Well, how about that, Emily!” the nurse said. “You were right, clever girl.”
Kari was so conscientious about the blog, I really admired her for the support she got for Emily just by stating the facts. We never asked for anything from the people who were following our journey except for prayers. My dad thinks that’s why people back home were so generous. Emily’s illness even made it into the local weekly newspaper, which mentioned Kari’s blog, and increased our following even more. It was beautiful to think that people we’d never met were praying for Emily. As I sat there fighting my darkness, I could visualize people I loved kneeling in prayer at Saints Peter and Paul’s church in Philipsburg and in other churches in nearby towns. People in my union were donating their vacation days to me for weeks at a time so that I wouldn’t miss a paycheck, and Kari’s colleagues at Penn State were doing the same. Some of the people who donated to me worked for my company in other states and didn’t know me from a stranger on the street. Here we were, in the hospital 120 miles from Philipsburg, and even farther from my coworkers at First Energy scattered around five states, but I felt in my bones those openhearted commitments of support. Through the blog and through my whispers, we were connecting to a current of energy to support our little girl, and every day I was grateful for that, even at the moments when Kari and I were irritated with each other.
Emily was sleeping and I was yelling softly at our insurance company. Not the big, screaming, listen-you-damned-bureaucrat voice but the low, menacing you’re-not-going-to-win-this-shakedown one that is more appropriate in front of a sleeping child. I wasn’t going to get any satisfaction from this call, and I hung up with a firm thumb to the End button. An uncomfortable silence settled over the room. It was not a calm silence, but of frustration. Kari had been typing a new blog entry when she slammed her laptop shut.
“Sometimes I don’t want to write just the facts. Do you know what I want to write, what I actually feel? Cancer sucks!”
“You probably shouldn’t write that in the blog,” I suggested, raising my eyebrows in surprise.
“I’ll write what I’m supposed to write,” she said. “I’m just telling you that sometimes I want to write my true feelings, but you want me to write only positive things. I want to say that we’re watching our daughter endure horrific
