I wasn’t the only person being pushed outside of my comfort zone to give Emily this gift. I kept an eye on Kari, who is anxious in crowds, as we walked toward Rockefeller Plaza to the American Girl doll store. The store was so crowded you could barely move. Emily had received a bald American Girl doll for Christmas, so she was not interested in the store’s salon where dolls could get their hair done, but she was interested in the doll hospital. She was also interested in getting her ears pierced there, but it turned out they pierced only the ears of the dolls. I wasn’t interested in any of it. This had to be a mother-daughter moment. The noise, the crowds, the colors—it was all too much for me and for Becky. She and I ended up standing outside, tending to Emily’s wheelchair. Becky was such a great tour guide for us, taking us to Times Square and over to Toys“R”Us so Emily could ride the Ferris wheel that dominated the center of the store. I don’t know how we would have braved it all without her.
We ate a lot of pizza in our room to save money, but I promised that on the last night we were there we’d have a special dinner in the Algonquin dining room. Kari and Emily dressed up for our special meal. We sat in a big red leatherette banquette, served by the greatest waiters, silent and swift in answering our needs before we even mentioned them. Before we ate, Emily insisted on counting out her pills, all seventeen of them. My brilliant girl wanted to get control of all of the aspects of her disease because she’d caught the nurses and the doctors making mistakes. She knew the names of each of her medicines and what they were supposed to do for her, announcing that as she counted them out.
I was so proud of her I guess I didn’t realize how sick Emily might look to a stranger. She looked healthy, happy, and beautiful to me. When I asked for the bill the waiter told us that a man on the other side of the restaurant had picked up the check. I didn’t get a chance to thank him. He left before we knew his good deed. You’ll never again hear a negative word from me about New York City.
In February, Emily was admitted to the hospital for a fever just a few days before THON weekend. She had been looking forward to the weekend for months, and she was extremely anxious to get well so she would not miss it. Even though we were miles away, we were drawn into the action because of the wonderful tradition THON has to kick off the dancing. The children on the cancer unit at Hershey write letters thanking the dancers for what they are about to do. We all wrote letters to the dancers and placed them in the satchel that would be conveyed over land to THON, one hundred miles away, with runners taking three-mile segments. The relay was perfectly timed so that the last runner arrived in the stadium to deliver the letters shortly before the forty-six hours of dancing commenced. We felt so lucky Emily was discharged in time for us to participate in both ends of this great tradition, to write the letters and then to be there when the dancers received them. We celebrated when THON raised close to $10 million. And we were honored to be just a small part of that.
Chapter 9
RELAPSE
As spring arrived, Emily was granted a Make-A-Wish trip to Disney World. When she was first diagnosed, the Make-A-Wish Foundation had approached us about fulfilling whatever wish she had, and we had a tough time deciding what that would be. We even polled the readers of Kari’s blog, where the winning choice turned out to be the right one: a trip to Give Kids The World Village near Orlando.
This was much more than just the trip to Disney World that we had imagined. The eighty-four-acre Give Kids The World private village is “right out of a fairy tale,” as Kari wrote in her blog. The families who bring their children to the village get to stay free in a community that is designed to fulfill every whim that these kids have. The 600 volunteers make sure that the families want for nothing, and that was clear from the first time we walked out of registration to find our villa. As we tugged our suitcases behind us, an elderly couple in a golf cart pulled up alongside us to offer us lemonade and cookies and to bring us to our rooms. The whole week we were there, we never had to walk if we didn’t want to, as there was always a golf cart and drivers standing by or patrolling the lanes. We ate our meals at the Gingerbread House, where they encouraged us just to stand up from the table and leave the cleanup to them. The Park of Dreams had a heated pool where children ran through spurting fountains, and after that they could take as many pony rides and turns around the carousel as they wanted and eat as much ice cream as they craved. Mickey and Minnie Mouse and the rest of the Disney characters came to the village to visit the kids instead of the other way around.
Honestly, it was hard to believe how great it was, a place where it was Christmas every day—literally, with a present for Emily delivered to the door every morning and a Christmas parade on Thursday complete with snow and a visit from Santa. We were surrounded by gravely ill children, but most of them didn’t seem sick at all that week, and Emily was
