It was no shock at all that, as Emily’s birthday approached, she instructed Kari and me that she really needed us to plan three birthday parties: one for her elementary school friends, one for the family, and one for her college friends, so that’s what we did. Her birthday is early enough in May that the college kids were still in town. I rented a bus that could hold twenty-five and drove it over to Penn State to pick up her guests, but more than that showed up at the party. I enlisted Pappy Rob, who is an incredible cook, to tend to the grill, making hot dogs, burgers, and his delicious grilled chicken. The grandmas were more than generous, adding side dishes to the ones Kari made. I rented a large bouncy house—eighteen feet square and fourteen feet high—and dumped a whole bottle of dish soap on its floor. When I turned on the hose inside of it, the college kids were slipping all over the place and laughing.
It was such a happy beginning to the summer, to Emily’s sixth year. We’d beaten leukemia, or so it seemed. It had been tough, but the chemotherapy was working. People started complaining on the blog that Kari wasn’t posting enough. She didn’t have much to say because weeks went by without complications, requiring only routine clinic visits. When Emily started first grade, we felt like we had emerged from a dark tunnel.
Emily began first grade last week! She was not happy about going back. The first day she went to the school nurse in the first two hours… once because her hand hurt and the second time because her belly hurt. She ended up staying all day but I asked her why she wanted to come home and she replied, “Because I already know everything and I was bored.” The past few days have been better though, and she actually has been learning new things that she finds interesting… such as the lifecycle of the butterfly. I said to her “so you ARE learning new things at school” and then she just rolled her eyes at me. She’s very picky about what she wears and anything I try putting in her hair is immediately pulled out (barrettes, hairbands, etc.). Apparently those things are not “in” right now and “none of the girls wear things in their hair.”
—Kari’s journal
September 8, 2011
Our lives seemed more like the lives of other families now. Emily was complaining about the things that other little girls complain about, like what she was wearing and how boring school could be. When we went to Vancouver in September for my union convention, we didn’t feel we had much to worry about, although I was fortunate enough to be seated next to an executive from the Vancouver Children’s Hospital on the plane and got his contact number, and the name of a pediatric oncologist there, just in case our confidence was misplaced.
We stayed in a beautiful hotel in the center of town, the Fairmont, which, like the Algonquin, had resident pets: two dogs. Emily loved playing with them. We couldn’t help but compare her energy and joy on this trip with her quiet demeanor when we’d been in New York for Christmas in 2010. Instead of being in a wheelchair, she ran through the lobby to see the dogs under her own power.
When we got a day free to see the sights, we visited the park to walk across the Capilano Suspension Bridge. This bridge is 230 feet above a river and trees and 430 feet long. I’m used to being up high in the bucket, so looking down at this dizzying sight didn’t rattle me, nor did it rattle Emily. She literally skipped across the bridge, stopping only to help a woman who was overcome with fear at the midpoint. Emily was so kind. She motioned me over to help the woman. I helped the woman make her way to the other side while Emily distracted her by chatting about how her daddy is used to heights because he works on the power lines.
We packed a lot into our few days there, even though Emily started to complain that her legs were hurting. Kari and I brushed off her complaints because she had been walking more than usual and we thought her legs were just tired. We thought she was just making excuses to sit down someplace where she could get ice cream. She was so energetic and excited by all the new things we were seeing. We didn’t want her to start using this old excuse of her legs hurting as a way to get out of things the rest of the family wanted to do.
Later that month, Aunt Kathy, Kari’s aunt on her mother’s side, came to stay with Emily so Kari and I could have a date night. We were feeling good. Emily had been in remission for sixteen months, and in this mood of victory we asked each other questions we had not dared to ask when it seemed like Emily might not make it.
“Do you ever think, all of a sudden, oh my God, my daughter has cancer?” I asked Kari.
“Or just wake up in the middle of the night or stop in the middle of the aisle when you are grocery shopping and it hits you again?” Kari said.
I didn’t know that she had the same physical reactions that I had, how when I thought those things my chest got tight and sometimes it felt like I couldn’t breathe.
Kari compared that sensation to the moment when the doctor told her that Emily had cancer. Kari’s first thoughts, after the shock subsided, were about all the people she knew, old and young, who had had leukemia and how they had suffered. Some of them had died. She feared how much Emily would suffer, and that she might not make it through. Kari also
