Chapter 6

BACK HOME

Tom and I thought our lives were busy and stressful before we found out that Emily had leukemia… now we realize we had no idea what busy and stressful meant! Our days are filling up with doctor appointments, home nursing visits, physical therapy appointments, occupational therapy appointments… we have an appointment every day next week. I have no idea how we are supposed to go to work. Tom started back to work today while I stayed home with Emily.

—Kari’s journal

June 24, 2010

It was June 23 before Emily was well enough that we could make the two-hour drive back to Philipsburg. Although I’d traveled US Route 322 between Hershey and home many times, this journey was much different. We had a new perspective. You know when you recognize that you are having a bad day and ask yourself, “Can this day get any worse?” We now had many examples that proved the answer to that question is yes.

The doctors said to us before we left that some children have a difficult induction phase. Emily’s had been one of the most difficult they’d seen, but we had gotten through it. We were praying for fewer complications as we started the consolidation phase. The next step was to wait for her bone marrow to make new, healthy cells. We would go back to the oncology clinic in about a week, when Emily would get another bone marrow aspiration to see if she was in remission.

There had been such joy in Emily’s hospital room as we bustled around packing up all the stuff we’d accumulated in the last two weeks. Some families liked to keep the rooms tidy. Compared to those people, we were a circus. Emily had at least a hundred get-well cards from friends and family that we had taped to the walls, and dozens of gifts. As we dismantled her room, we took all the cards off the walls and stacked the gifts in a big pile by the door. There were so many of them that we donated some to the oncology unit so that other kids could receive gifts. We had so much stuff that I had to borrow a cart from the hospital to get all of it to the car. It took several trips. I joked with Emily that I couldn’t wait to get home and back to my man cave so I could watch HBO because we’d been watching the Disney Channel for weeks.

As we were packing, Kari suddenly remembered the Father’s Day present she and Emily were working on right before Emily was diagnosed. Father’s Day has always been special to me because that was the day Emily took her first step as a one-year-old. With everything that was going on, I hadn’t even noticed that the Sunday before, June 20, had been that holiday.

Kari knew how much that day meant to me. Before Emily had been diagnosed, I’d known Emily and Kari were up to something, and I suspected it was about Father’s Day. They’d kept going off together for hours, and they wouldn’t tell me why or where they were going.

Sitting in the happy chaos of our dismantled hospital room, I found out what they’d been up to. Kari opened up her laptop to show me a video she’d made for Father’s Day: a series of five photos of Emily holding up big letters she had made that spelled out “DADDY.” It was the Emily of just a month ago, just a week or so before we found out she was sick. As I watched the photos slide by in a video, set to the song “Daddy-O” by Frances England, I cried. I was so grateful that Kari had captured these moments that we would always yearn for but could never come again. I took the video out to the nurses’ station and showed it to them as a way to say farewell to the staff that had been so good to us for so long.

When all was ready to go, Emily asked if she could ride through the hospital on top of the last pile on the cart. Of course she could. We came down the hallway pulling the departing princess, and she smiled as she waved to everyone she passed on our way to the parking garage.

You know how when you have a long drive that you’ve done a bunch of times, you pick landmarks to note your progress? For me, we hadn’t really left the grip of Hershey until we had crossed the Susquehanna River. The mood in the car always lightened when Emily pointed out the twenty-five-foot replica of the Statue of Liberty located in the Dauphin Narrows. When we reached the top of Seven Mountains, when it was literally all downhill from there, we were close to home.

I was thinking about my Father’s Day present as I looked at Emily in the rearview mirror. I wondered how she would look to the people who hadn’t seen her since she got sick.

I pulled off at the Philipsburg exit and drove past my brother Jim’s house, past my grandparents’ place, and into the driveway of our house, a few blocks from my brother Greg’s. I expected both of my brothers would be dropping by that evening. Hell, when I knew we were at last coming home, I wanted to throw a big party and have everybody come to celebrate Emily. But Kari said no. Kari said we had to let Emily’s wishes guide our actions. Maybe she would be tired or sick when we arrived. Maybe she would be fine, just not ready for so much company right away. Kari was right.

I carried Emily up the stairs to our kitchen, and I could see my mom had been very busy anticipating our homecoming. The house was sparkling clean and the fridge was full of groceries, including a casserole for tonight, soup for tomorrow, and, of course, banana bread. I carried Emily down the hall into her room, where I saw mom’s touch again. Emily told Nanny at the hospital that she missed her stuffed animals. Mom had arranged all one hundred of them in neat rows on the bed, grouped by animal, with her favorite stuffed lambs at the front. Emily pulled the lambs forward to set them in a semicircle facing her and Lammy, who had come with her to the hospital. Lammy addressed the assembled multitude from the crook of Emily’s arm, explaining in a high-pitched voice littered with baaaahs how Emily and she had been to the hospital and it had been awful but now they were home, and they weren’t going away again.

While we had been wrapped up in what was happening at the hospital, Emily’s homecoming was front-page news in the Philipsburg weekly newspaper. There were cards from well-wishers in big bags on the kitchen table and, because so many people followed Kari’s blog, dozens of “Welcome home” messages and invitations on the voice mail. We started taking cards out of the bags to share with Emily, but she could handle only a few before she wanted to stop. I could see the wisdom of Kari’s insight that Emily might need to let the world in gradually.

The next day Emily was moody and uncharacteristically shy because she couldn’t walk and had to be in a wheelchair to go any real distances. This was embarrassing to her and she was self-conscious about the way she looked. She had not yet lost her hair from chemotherapy, but her face was swollen from the steroids and she was retaining so much water that her clothes didn’t fit her well. She had to sleep in one of Kari’s shirts. Everything about her body was uncomfortable.

We got her a child-sized walker and I put tennis balls on the feet to make it easier to push along the floor, but it was still a lot of effort to get her to take a few steps. Her legs were sore and her muscles were weak, so walking was not pleasant. I cheered her on, but cheering didn’t rouse her much. Then I made the mistake of bribing her, offering her a trip to the ice cream shop if she walked across the room. From then on, we had protracted negotiations each time I wanted her to get up to her feet. We had to get a new coloring book, or paints or markers. She won many of these negotiations and I remember saying, “You could be a lawyer with those negotiation skills!”

Once we adjusted to being back home, we made an appointment to meet Dr. Jim Powell, a pediatric oncologist who had worked at Hershey but now worked at Mount Nittany Medical Center. He managed the pediatric oncology patients who were being treated at Hershey but lived locally, so that they didn’t have to make that two-hour drive as often. He was a very nice man, a family man with an amazing wife, Miriam, and two adorable sons. We had an instant connection with him. Mount Nittany Medical Center is only a twenty-five-minute drive from home, and Dr. Powell agreed that we could schedule some of Emily’s clinic visits with him. We could call him when Emily had a fever and he could administer antibiotics. He knew Emily’s doctors at Hershey, and, with his guidance and care, he promised he’d arrange for Emily to be the first pediatric patient to receive chemo at Mount Nittany. What a relief to have a great doctor so close to home.

At our visit with Dr. Powell, he encouraged us to get Emily walking to strengthen her leg muscles, and I thought taking her to our family camp might help. Camp was a rocky mile-long drive down a dirt road through the woods to a clearing near a creek. During hunting season, the men of my father’s and grandfather’s generation brought their sons to camp every weekend, and those weekends were governed by well-established rules. As a young boy, I watched my older brother Jim go off with Dad when he turned five, and I could hardly wait to be old enough to join them. My grandfather’s generation were World War II veterans, and they liked a rugged atmosphere. They fed us buckwheat pancakes for breakfast and C rations for lunch and dinner. You had to be twelve years old before they let you handle a gun, so for those first seven years what you really were learning was how to be a man.

Every morning the men divided into two groups, with half the men (and boys) up in the hunting stands and the other half working as pushers. The pushers formed a line and walked through the forest, flushing the game in front of them as they advanced toward the hunting stands. As a young boy, I’d be alongside either my dad or his uncles (who were close in age to him) as we strode strongly forward, making as much noise as we could. That was so different from up in the hunting stands, when we had to be quiet.

The job of the young kids in the stands was to use the binoculars to spot deer or bears. Most of the time, though, we were silent and alert to any twitch of a branch or footfall on the forest floor. I remember how hard it was to sit very still. Also, I remember being in awe of my dad, Big Jim, who was six feet and broad in the shoulders. I always thought he was one of the strongest men in Philipsburg. He was the dad who, when a fight broke out at a party, waded into the crush of people and separated the combatants. When Big Jim laid his big mitts on you, you felt it, and you straightened up right away. On the walkie-talkies we used to communicate in the forest, his handle was Poppa Bear, and it suited him.

Then my generation took over and the place started to change. My brothers and other members of our family are pretty good cooks, so we worked on upgrading the kitchen and began throwing a big full-week party after Thanksgiving, right around the opening of buck season. Where it used to be lots of trucks and heaps of dirt bikes on the land next to the camp, in our era it became lines of ATVs. Friends and their families come from all over the area, over the back roads and through the streams and down the hillsides, until they get to our place for some brisket. And the other thing that changed was that my brothers and I included our daughters.

We kept the family tradition of stocking the creek with trout in the spring so the kids could learn to fish, but we added in some palomino fish because the colors delighted the little girls and the boys, too. When I started taking Emily up in the hunting stand, I never expected her to want to shoot, although it would have been fine with me if she did. I wanted her to have what I had had with my dad, that quiet time looking around at nature.

I started taking Emily out to camp from the moment she could sit up in a car seat, but never during hunting season, so we could spend time together in the woods. By the time she was three or four, able to walk far enough to check out a porcupine, we’d go out every weekend, just the two of us. Emily loved to climb, so I would let her go first up the long ladder to the hunting stand. I would be right behind her to catch her if she missed a rung. Up there with me she learned to distinguish the different birdsongs, and to look for porcupines, raccoons, and turkeys. She even named pairs of does and their fawns. This was my way of opening this part of my world to her in whatever way she wanted to take it. She loved being there with me. This was why I hoped that getting her to the hunting camp might encourage her to walk.

As we drove slowly down the dirt road to camp, she was scanning the trees for birds and the forest floor for animals. I stopped the SUV next to the camp and got out her wheelchair and her walker, hoping she’d choose to walk, but she did not. I picked her up out of the SUV, gently placed her into the wheelchair, and maneuvered it over a rocky path to the bridge so she could look at the fish and scatter some food for them. Then I pushed the chair over to sit at the side of the stream for a while.

I scanned these familiar hillsides as Emily and I sat silently by the creek. I knew every contour of the hill, every stream, and all the hallows. By the time I was ten and Jim was eleven, we’d saved up to buy dirt bikes. Every chance we got, we were kicking up dust, rocks flying in our wake, as we splashed through the streams to the tops of the strip-mined mountains, heading home only when we saw the sun getting low in the sky. Had my love of this land given Emily leukemia? The doctors said they didn’t know what caused her disease. Was it genetics? Did some inherited genetic defect in the body awaken the cancer in someone who was vulnerable to that form of the disease? Could the medicine I had been taking for years for Crohn’s disease have somehow caused Emily’s leukemia? Or was it mostly environmental? Had my brothers and I splashed through toxins in the streams that ran down the sides of the strip-mined hills? The doctors told us not to focus on what might have caused her cancer because we would never have a definitive answer. They suggested we use all of our energy to focus on getting Emily through this. But I still couldn’t stop thinking, Is this horrible thing that happened to her in some way my fault?

I kept recalling something that had happened the summer before. I had a powerful bug spray that I kept in my SUV, the kind that had DEET in it, to help me fend off the bloodthirsty ticks that attacked us at camp. Also, that summer, Emily loved an apple-flavored spray candy they sold at the concession stands at the high school softball games. One Saturday when we pulled into our driveway, I had just unstrapped Emily from her booster seat when a friend stopped by. While he and I chatted, Emily pretended to drive for a while, but it wasn’t too long before she was on the floor rummaging around underneath the seat and found the bug spray that had fallen out of my bag.

By the time I said goodbye to my friend, I caught her in the foot well with a terrified look on her face. Emily was alarmed by the taste of the “candy” and ran into the house to ask Kari what to do about the candy that was making her mouth burn. That’s when we realized she’d sprayed DEET in her mouth. We rushed to the ER, worried that she had swallowed the toxin. The doctor there told me not to worry because it was a small amount, but I worried still as I was sitting by the stream with Emily, trying to find a way to blame myself for the pain that had happened to my blameless little girl.

At camp, Emily and I sat for a while in the comfortable silence we’d built over the years. There was so much she had learned just by being there with me. I remembered how, the summer before, we had been walking when a family of turkeys, a mom, dad, and their chicks, walked some distance up ahead of us and Emily froze. Then it seemed like the turkeys disappeared. Emily looked upset and a bit confused, as if she had imagined them. I crouched down and told her softly to stay still and have patience, which is very hard for a child that age, but she held her ground. I’ll never forget the delight on her face when the ferns and brush started to move, and the turkey family skittered from the underbrush and dashed across the forest floor. No better way to learn the virtue of patience than through such an experience, which gave her such a wonderful reward.

That afternoon at camp I could hear the chickadees, bluebirds, and whip-poor-wills over the rush of the stream in front of us. I saw Emily’s eyes searching the wood until she caught sight of a fawn in a beam of sunlight, its graceful head responding to small sounds in the woods around.

“Do you want to take a couple of steps, Emily?”

“No, Daddy. I just want to sit here.”

“Just a couple of steps, huh? Might help to get your feet on rough ground to strengthen some of the muscles you don’t get to use much indoors.”

“No. I’ll just sit.”

I wanted so much for my girl. I wanted more than she could ever know and maybe ever imagine, but maybe that was too much. I should take her where she was, as Kari always advised, and be happy with what we had, with this moment right now in the forest, where we didn’t have to struggle at all.

When she was ready to go home, I pushed her in the wheelchair back to the SUV, picked her up, and strapped her into her booster seat, then stowed the walker and the wheelchair in the back. When we started back up the dirt road the afternoon was cool enough that we didn’t need the air conditioner.

I opened the windows to the SUV so we could fill our lungs with that forest smell, the trees and the vegetation turning into mulch on the forest floor. I looked at her in the rearview mirror and saw a little girl who was getting stronger every day. Her eyes were half-closed in blissful contentment, and I felt so grateful to be home.