Emily seemed oblivious to these delays, so I guess Kari and I were hiding our anxiety well enough. The fact that she was on a large dose of steroids made her fierce at air hockey; she wanted to go to the playroom at least once a day, and she was beating me! I teased her that it wasn’t fair because she was on performance-enhancing drugs. Inside I was dying from the tension and from being cooped up in the hospital with no way to improve Emily’s chances of survival.
We were on our way home from Hershey after the most recent hospital stay, driving in two cars, with me in the lead. Emily was not feeling well and we wanted to get home quickly, so I told Kari I’d go faster than her. If there were police along the way who caught us speeding, they’d snag me, and she and Emily could keep going. We were coming into State College with only about twenty-five miles until we were home. I didn’t see the officer sitting in the median. Kari was the one who got pulled over. He could have stopped me, but he went for the cute blond instead.
I pulled off ahead of Kari, then the officer was right behind her.
I opened my driver’s-side window and shouted, “Officer, can I speak to you? I’m the husband. We have a sick child. Can you talk to me first?”
He heard me and ignored what I said. He started asking Kari for her identification.
“He’ll see Emily,” I tried to reassure myself. “He’ll see she’s bald and those dark circles under her eyes and he’ll let Kari go.”
I felt I had to check on Emily, but my state trooper friends have told me never to approach a policeman or patrol car during a traffic stop. I shouted again as he walked smugly back to the patrol car to check Kari’s license and registration, again ignoring me.
I couldn’t take it anymore. I know a lot of the state troopers at this local barracks, and I could let him know that I was not a threat. I opened my car door and slowly walked to the passenger side of Kari’s vehicle. I opened the back door to make sure Emily wasn’t frightened. I saw that Emily was sleeping, and again, I tried to get the officer’s attention. He clearly heard me but ignored me. I wanted to let him know that Emily was sick and we needed to get her home. I took two steps in his direction.
He immediately got out of his car and started screaming at me.
“You go back to your car right now!” he yelled.
He put his hand on his weapon as if he was going to draw on me.
I returned to my vehicle.
I passed the time he took reviewing Kari’s paperwork by calling my state trooper friend Gary, who calmed me down. When the officer returned from handing Kari a warning, he finally walked to my passenger-side window to acknowledge me.
“Is that your family?” he asked.
“That is. That’s my daughter sick with cancer.”
“You can’t come at my car,” he said. “That’s a threat to me.”
“Can’t you see she’s extremely sick? You could have given me the ticket. You should have let them go!”
“I could tell you have a sick child. I only gave them a warning,” he said.
“I hope that you never have to experience having a sick child,” I said, and then pulled out.
When we arrived home, Emily was giggling.
“Daddy, I pretended I was asleep while Mommy was being arrested, but I was sleep-listening,” she said.
Leave it to Emily to get us to smile that day.
Maybe I would have handled that situation better if I had not been feeling the stress of it all in every cell of my body. The next time Emily was admitted at Hershey, I was, too. The tension caused my Crohn’s disease to flare up and I was in agony. I had arranged to get my infusion of Remicade at Hershey, a procedure that takes a few hours. The Remicade is expensive and they don’t mix it up until you arrive at the infusion suite. Before they start the infusion, they check your vital signs, your heart rate, blood pressure, and temperature. While I was getting my infusion, I got a fever and they thought I might be getting an infection, so they admitted me to the hospital. This upset me even more; the anxiety that comes from futility. I would be in this hospital room far away from Kari and Emily. If something went wrong suddenly, I couldn’t be there for them.
The staff at Hershey was so kind to us. Emily’s room faced a courtyard and they put me in a room a few floors down from her, a room visible from her window. She used the binoculars to look at me, and we spoke on the phone even if it was just for us to shout “Meep!” I was soothed by being able to see her whenever I wanted. The hospital really helped us make the best of it.
Nothing feels right, we are second-guessing all of our decisions, and we are pretty much starting to totally freak out about everything right now.… Please pray for no fever and no infections for Emily and that her counts come up and we can go home soon!
—Kari’s journal
January 11, 2012
Being in limbo, with the lab numbers fluctuating and the uncertainty about when the transplant would happen, had us pacing the hallways. Anytime we wanted to take a phone call, we’d have to leave the room because we didn’t want Emily to hear us say what we were thinking. Mostly Emily was fine, but it was agony for me and Kari. Should we take her to CHOP? No, no. They would be doing exactly what Hershey was doing, so why change? But was there something else there that could save Emily?
