Chapter 30

On Day 38, Dr. Burroughs announced her plans to discharge Andrew by the end of the week. Although he was eating some, he was still on TPN for most of his nutritional needs, and many of his medications were still administered by IV. How they could possibly detach him from the rubber lines and poles in just a few short days, I didn’t know.

I spent the next three days in class at the SCCA in downtown Seattle learning to care for someone on a neutropenic diet. It was designed for people with weakened immune systems, in order to protect them from bacteria and other harmful organisms that could wreak havoc in a fragile body. My head was spinning with the rigid requirements of food choice, purchasing, and preparation.

“I suggest you grocery shop with multiple carts so that meats don’t touch vegetables or fruit. Dry goods should be in a third cart,” droned our instructor.

Yeah right, like I was going to drag around a train of grocery carts behind me. Won’t they all touch anyway when the checker gets her hands on them?

Purell was introduced as my new best friend. I stashed bottles in our van, our house, my coat pockets, and my purse. Anne called her housecleaner and requested a deep cleaning and disinfection of our entire house. Even with all the careful planning, I was scared to death. I wasn’t ready for Andrew to re-enter our unsanitized world. Not yet.

“Andrew is able to take all of his medications now by mouth,” Dr. Burroughs told me on Day 40. “And this morning I plan to take him off of his TPN. Let’s see how he does with his eating. Does this sound like a good plan to you?”

Noooo! I screamed in my head. “Yes,” I squeaked out.

“And I want him to start physical therapy to get his muscle tone back,” she added. “I will arrange for that today.”

Nancy, Andrew’s new physical therapist, had him pegged before she walked in the door. “I’m hungry, Andrew. Are you?”

“Nope.”

“You won’t mind if I eat this cake here, will you?” she said, fishing a fork from her pocket.

Andrew looked over at the cake. “I like Red Velvet Cake. And I like beef.”

“Mmmm. I like Red Velvet, too,” Nancy said, stuffing another piece of fluffy cake in her mouth. “That reminds me, I’m supposed to make something for Volunteer Appreciation Day. Would you be interested in helping me?” She concentrated on her cake.

Andrew glanced at her as if it were a trick question. “I would if I weren’t attached to these dumb poles. Plus, I can’t leave this hallway. Too many germs,” he grumbled.

Finishing the last bite of cake, Nancy stood up and stashed her fork back in her pocket. “That’s not a problem. I’ll see you later then.” The session was over.

Andrew’s eyes followed her out the door. After a few quiet moments, he looked over to me on the cot and said, “She’s a strange one, Mom.”

On Wednesday morning, there was a sticky note on our door that read, “Nancy will be here at 2:00 p.m.”

Who’s Nancy? I thought, before remembering the strange cake-eating woman. I couldn’t imagine what the next physical therapy session would be like. At 2:00 p.m. sharp, a cart rumbled down the hall and stopped in front of our door. A persistent knock came from the other side.

“Andrew, can you open the door for me? My hands are full,” a voice called from outside.

Grumbling, Andrew hoisted himself out of bed, unplugged the IV poles from the wall, and drug them to the door. With a quick thank you, Nancy moved in and began setting up a mock kitchen.

“We’re making Red Velvet Cake today,” she announced to her speechless patient.

She proceeded to pull measuring cups, bowls, utensils, baking pans and carefully packed ingredients from the bottom shelf of the cart—much like the Harry Potter character Hermione, pulling a full-sized tent out of her magical purse.

Within minutes, Nancy had transformed our room into a working kitchen. Handing Andrew a set of surgical gloves, she began her lesson.

“So I heard you want to be a chef. How about you show me your stuff?” she said.

“What do you want me to do?”

“Bake a cake.”

For the next forty-five minutes, Nancy had Andrew reaching up high to retrieve measuring spoons she had set on top of cabinets, and squat down low to grapple with unruly bags of flour. She asked him to blend, sift, and finally mix 200 strokes with a wire whisk. His arms were sore and he was tired, but there was a smile lighting his face.

Nancy read from her recipe card. “The last step is to put red dye in the batter. It calls for two teaspoons.”

“I like it my way,” Andrew said, dumping the entire bottle of red food coloring into the golden batter.

A gleeful, impish grin spread across his face, and my heart melted. Nancy, like Sue, spoke a language Andrew could relate to. She was able to enter his world, see things the way he saw them, and make him feel capable of something he could never have done just weeks before.

I woke up Thursday morning to see someone had written, “FRIDAY: Discharge Day!” in big blue letters across the top of the white board.

“No! This is too fast. I’m not ready!” I cursed the unwanted message.

I couldn’t imagine Andrew, minus two poles and four pumps full of IV medications grinding away twenty-four hours a day. Taped under the announcement was a list of back-to-back appointments scheduled for the next day. My throat tightened and I felt the tingle of tears. I didn’t want to think about tomorrow. I wanted coffee.

Dr. Burroughs caught me in the hall as I was making my escape. “Let’s talk,” she said, leading me to the playroom.

Was it bad news? I couldn’t handle any bad news. Dr. Burroughs studied me for a moment. “You’ve been here a very long time. It’s a big deal to go back home.”

Without realizing what was on my mind, I asked, “Will things ever get back to normal?”

She eyed me carefully, leaning forward in her chair. “Things will never be normal.”

The words felt like a slap to my face and I shrunk back from the sting of it. Unconsciously, I raised my hands to rub at my reddened cheeks. Why would she say something like that? Hadn’t I been laboring each day for two years in hopes of getting our lives back?

“I don’t believe that,” I said.

Dr. Burroughs’s face softened. She picked up her chair and moved it next to mine. I stared out the window at the nearly complete hospital addition that soared four stories above the building we were in. The exterior trim and facade was complete, a breathtaking example of contemporary Northwest architecture. A new construction team was completing the internal workings of one of the most sophisticated medical buildings in the region. How I wished they could construct my internal workings.

“What I meant was, you can never go back to your old life the way it was. Everything has changed. Andrew has changed.”

Tears spilled down my face, clear evidence of my silent grief. Dr. Burroughs turned to me, her hands on my knees.

I stared at her through my tears. “I’m scared to go home. I don’t think I can take care of him.”

Home was a thirty-minute drive across the Lake Washington floating bridge, but to me it felt light years away.

“We aren’t just letting you go, you’ll be on a very short leash,” she said with a smile. “When you wake up each morning and Andrew is well, then know it’s a good day. We don’t know what will happen tomorrow, but we do know what is happening today. Live in the goodness of today.”

I allowed the truth of her words to sink in. They reminded me of Becki’s advice months before when she encouraged me to be present, to live in the moment.

“But I’m not sure how to do that.”

“Expand your definition of normal,” she said. “Make room for the unexpected—that will allow you to live your life.”

Standing up to leave, she placed her hand on my shoulder in a parental gesture of encouragement. “You are brave. Your son is strong. You will be okay,” she whispered into my ear.

After she left, I slipped into the community bathroom and bolted the door. Gripping both edges of the sink, I looked up and met myself in the mirror. Green eyes stared back at me, full of questions. Why am I so scared to go home? How do I re-enter my life? How can I care for an adult child that requires 24-hour nursing care? The medications, IV’s, caring for the Hickman line—if I screwed up, it could mean the difference between life and death.

Stepping back from the sink, I considered the mother in the mirror without judgment. Was I the same woman who held a newborn baby on her chest one early July evening? The one who feared she wouldn’t be able to raise a child she didn’t know? Had I done a good job?

The green eyes in the mirror twinkled. Are you ready to admit that you have done the very best you could? they asked. That you have loved this boy and raised him well? That you gave up your life to fight for his life?

Sinking to the floor, I allowed the reality of those words to wash over me. I felt… relief. Jon was right. We left no stone unturned. We had done everything.

A moment later, I heard silent words speak to my soul, “You are not alone.”

“I am not alone,” my heart replied.

A flurry of activity descended on us Friday morning. Jon and I were anxious about taking home our fragile, skinny, and bald child. Newly untethered from the last of his poles, Andrew walked around the room—a free man. Clutching our coffee cups like a life preserver, we were whisked off to the first meeting of the day.

“You’ll be administering Andrew’s IV’s at night until he doesn’t need them anymore,” a woman with frizzy yellow hair said. She recited the directions from a note card and demonstrated on a miniature Hickman line attached to an IV bag. She handed the apparatus to Jon. “Now repeat what I did.”

I watched Jon as he first flushed the line with saline, then attached the bag like she demonstrated.

“Next, I will show you how to prime the line and prep the machine. You’ll need a new set of batteries every night…”

I lost her after ‘batteries’ and began to daydream. What should I make for dinner tonight? I’m hungry for real food. Do we have any groceries in the fridge? I bet I’ll have to get some. Hannah can help me… she loves to cook.

“Now it’s your turn,” Miss Yellow Hair said.

She took the bag and Hickman line from Jon and dropped it in my lap. I returned her look with a blank stare.

“I will probably be taking care of the IV’s for a while,” Jon said when I didn’t reply.

“Nope. You gotta do it, too.” She crossed her arms over her ample bosom.

I fumbled my way through it and must have passed, because the next thing I knew, she was packing up and handing us a packet of directions and the name of the company that would be shipping IV bags to us every two days.

Walking back down the hall in a daze, I saw that Anne had arrived and was packing up our room. She had volunteered to stay with Andrew while Jon and I attended our exit meetings.

“Andrew, can you help me with the books? Let’s put them in the bag,” I heard her say.

I saw Andrew clutching Stuffed Frightful and his Shadow action figure in one hand while grappling for his Hunger Games trilogy. “These go with me,” he said, scooting around the other side of the room.

Such emotion was bottled up in that little room, and for some weird reason, I felt attached to it. Almost like I was leaving part of myself behind.

Andrew began talking to Shadow, contorting his arms and legs in every possible direction.

“Are you nervous about going home?” Anne asked him.

“I want to see my chickens. Grandma Cherry said they’re laying eggs. Araucanas lay blue ones. Sometimes they’re greenish, depending on their diet,” he responded.

Jon and I left for our next appointment.

“I’ll be going over Andrew’s medication list with you,” the pharmacist said. “I put them in a spreadsheet for you so you won’t get them mixed up.” He handed us a three-page chart.

I snorted. “Good Lord! Can a human swallow this many pills in one day?!”

I had an immediate flashback to my pre-transplant conference with Dr. Lewis, and the room began to swim. I let out a half giggle at the absurdity of it. Jon put his hand over mine. The quaking in my body slowed and I was able to listen as the pharmacist went over each medication and the time it was to be taken. Andrew’s medication alone would be my full time job.

Our last meeting finished four hours later. We were both numb. We were reminded over and over that we were on a short leash and that Andrew would be required to remain in seclusion for a year. We were warned about keeping him away from any possible infection and to stay within a twenty-five minute driving radius of the hospital. We were shown how to administer medications, prepare food, and bathe him with the Hickman line.

“You will need to report to the SCCA outpatient clinic at 7:30 tomorrow morning,” our nurse said as we were ready to leave.

Jon left to fill the prescriptions while Anne and I finished packing. Moments before we left, Dr. Burroughs poked her head in the door. “I know you feel overwhelmed today, but I want you to remember to take one day at a time. We will take care of tomorrow when it gets here.” She hugged me. “As for today, it’s a very good day!” she said, and left the room.

I looked around the empty room, at my son, and my friend who had organized my life for the past year. I thanked the nursing staff in the hallway, each of them I now knew by name. I stared out the window at the glassy façade of the new building next door and offered a silent prayer for all the children who would benefit from its being there.

And then I walked out the door for the last time.