by Alex Lyttle
Aleta came to the hospital twice more before Day 27. Both times she sat next to me on the cot while I read to Sammy, then after he was asleep we went out and joined the evening activities the volunteers put on. I spent most of my time thinking about Sammy and double-checking to be sure my walkie-talkie hadn’t run out of batteries, but not Aleta. She got involved. It was like something changed in her at these activities. At school she hardly spoke more than a few words to anyone but at Art Night she went and sat down next to Gracie—the little girl with ALL and Down Syndrome—and helped her make a necklace out of noodles. I guess the other volunteers must have noticed because at Pet Night she was asked to help walk the dogs around so the kids could pet them. She smiled, she laughed—something I hadn’t seen her do with other people around ever. I felt happy watching her. For a little while I could take my mind off Sammy—for a short, tiny, millisecond of a while.
Then finally it arrived. The day I had waited twenty-seven days for. The day we would have our answers.
I woke up and looked outside expecting to see dark storm clouds or maybe an ominous raven sitting on the fence around our yard but all in all it looked like a pretty normal day. The sun was still shining, the sky was still blue, there were no tornados or typhoons. In fact, Day 27 looked no different from Day 26.
At school I couldn’t concentrate. All I could think about were the answers we would have in a few hours. I heard Dr. Parker’s voice in my head saying that the bone needle at twenty-seven days was the best indicator of how Sammy would do. If it showed no cancer, Sammy would probably be fine.
At recess I marched across the frosted grass and sat watching the other kids playing while Aleta scribbled in her journal next to me, trying her best not to look anxious. She knew it was Day 27. She knew how nervous I was. I wanted her to come to the hospital with me but we agreed it wasn’t a good idea. So I drove with Dad and pretended that his hands always shook while he gripped the steering wheel.
When we got there Sammy was lying in bed, his hip covered with a square white bandage just visible through the slit in the side of his hospital gown like it had been after his first bone needle. Mom’s face told me she didn’t have answers yet; not happy enough for good news, not sad enough for bad, just a cardboard look of worry.
I sat next to Sammy and quickly dug through my day to retrieve something worth sharing. “Tom failed his math test this week. I saw it under mine when Ms. Draper was handing them out.”
Sammy grinned.
Dr. Parker came in sometime after dinner and I knew right away that he had an answer. He walked in and sat down on the end of Sammy’s bed, looking around the room. The only noise was a tiny hum from something behind Sammy’s bed. I wanted to know the answer so badly. I wanted to yell, “Tell me what you know!” but then he looked directly into my eyes and I had my answer. It was all over his face. His eyes lacked their usual twinkle. It was as if he had aged a hundred years since I saw him last.
His voice was quiet as he told us that Sammy’s cancer had not responded to the chemotherapy.
CHAPTER 33
I HADN’T STAYED LONG. I COULDN’T STAND BEING IN THE ROOM. You’d think I would have been overcome with sadness, like Dad whose sobs could be heard echoing around the oncology floor or Mom who sat next to Sammy rubbing his back and saying, “It’s going to be all right, it’s going to be all right.”
Instead I was overcome with another emotion—anger.
I was angry at the chemotherapy that had poisoned Sammy’s body for a whole month, taking his hair and shrinking his body but doing him absolutely no good. I was mad at the cancer. I was mad at Dr. Parker. I was mad at…
I stood up and walked quickly from the room. I walked down the hallway, glancing briefly into Oliver’s room to be sure he wasn’t there, then went into the games room. Oliver was sitting in his usual chair playing Mario. I walked up and turned the screen off—right in the middle of his game.
“You told me Sammy would be fine!” I yelled. “You lied to me!”
Oliver looked startled. I was screaming really loud but I didn’t care. I was furious.
“I never said Sammy would be fine,” he protested.
“You said to not let him lose hope! You made me believe he would be okay! But you knew all along that this would happen! You said you could tell straight away if a kid was going to be okay. You lied to me!”
“I said to have hope, yes, but I never said he would be fine.”
“Then why did you say that? Why did you make me build his hopes up if he had no hope at all? Why?”
“Because the only thing worse than dying is living without hope.”
At that moment I didn’t stop to think through what he’d said. I didn’t stop to think that maybe Oliver was living without hope. I was too angry to think.
“You’re not who I thought you were. You go around pretending like cancer and dying are no big deal but you’re nothing but a scared kid. I know your secret. You could have left here months ago but instead you stay. You stay because you’re too afraid to leave. Too afraid to be outside the walls of this hospital that you think protect you.”
Oliver’s face changed. He suddenly looked mad. “Ha! You think I like it here? You think this is some sort of safety net for me? You don’t know anything. Don’t come in here and pretend like you know what it feels like to have cancer.”
“You’re right—I don’t know. But if you weren’t so selfish maybe you’d see that you’re not the only one affected by your cancer. Maybe your brothers and sisters would like to spend some time with you before you’re gone. Maybe they’re sitting at home thinking about you right now. Maybe they have a secret spot tucked away in the trees that they really want to show you. Or maybe they’d like to go on a bike ride, or play a game of tag, or just sit and read. I may not know what it’s like to have cancer, but I know what it’s like to be the sibling.”
I seemed to hit a sensitive spot because his demeanour changed. His defensive wall crumbled and he slumped down in his chair. For a moment I just glared at him. My breathing was heavy and fast.
“It’s not that easy,” he said.
“What’s not so easy? You tell the nurses you want to go home and you do. Seems pretty easy to me.”
“I can’t leave, I, I…there’s…”
“There’s what? Tell me!”
His eyes narrowed and he looked straight at me. “You’re right. I don’t leave here because I’m scared. Every moment of every day I’m afraid that I’ll go to sleep and won’t wake up again. I’m scared shitless of dying. There’s the truth; you happy now?”
I stepped back in disbelief. I hadn’t for a moment believed myself when I’d accused him of being scared. I was just angry. “Afraid of dying?” I said. “Then why do you walk around pretending like it’s no big deal? What about your ‘everyone is dying’ speech? I thought the worst part about cancer wasn’t dying, I thought the worst part was the day-to-day symptoms.”
“I say a lot of things, Cal.” His voice was suddenly quiet. “The symptoms suck and are by far the worst part of cancer, but dying isn’t as easy as I pretend it is. The truth is I’m scared of dying because I know when I’m gone I’ll miss everything. Spring planting, fall harvests, riding horses, playing hide-and-go-seek with my brothers and sisters, my parents, the colony—it’ll all be gone.”
“So why stay here? If you’re worried about missing the colony and your family then why not spend as much time with them as you can?”
“Because the less time I spend out there, the less there will be to miss.”
The anger was quickly leaving. Instead a large hole began to open in my chest but that too was filling quickly. It was like a hole dug in the sand on a beach, out of nowhere water was rising from the bottom—the sadness was beginning to seep in. I felt suddenly exhausted and flopped down in the chair next to him.
For a while we just sat in silence until another thought came to me.
“What about your heaven? What about the idea
of becoming clouds and trees and a part of everything again?”
Oliver nodded slowly. “Yeah, it’s a nice thought, huh?”
I closed my eyes and put my head back on the seat.
“Yeah,” I said. “It is.”
I cried quietly in the chair next to Oliver. Normally I hated crying in front of anyone, but for some reason I just didn’t care. I felt the tears running down my cheeks, wetting the neck of my shirt. I thought about Sammy and Oliver and all the other kids who had cancer. It wasn’t fair. Then again, I guess I’d known right from the start that cancer wasn’t fair, and Sammy was just never lucky with anything.
I was pulled from my miserable daydreaming by the sound of my mother’s voice.
“Are you okay, Calvin?” she asked.
I looked up at her. She was standing in the doorway of the games room and looked anything but okay herself.
“I’m fine,” I said.
“Do you want to come back now?”
“Is Sammy awake?” I asked.
She nodded.
“Okay.”
I stood up and walked to the door but Oliver’s voice stopped me.
“Cal,” he said.
“Yeah?”
“I’m sorry about Sammy.”
CHAPTER 34
THE ONLY THING WORSE THAN DYING IS LIVING WITHOUT HOPE.
I kept Oliver’s words with me after Day 27. Sometimes it was hard—very hard—but I saw it as my job to make sure Sammy didn’t give up. Probably because I wasn’t ready to give up.
“There are other options and we will try them all if we have to,” Dr. Parker explained.
“What other options?” Dad asked.
“There are different chemotherapies, higher doses—we’ll come up with a plan but as I said, things will be more difficult now that induction therapy has failed. The cancer is spreading and Sammy is weaker—still, we won’t give up hope.”
“What about transplant?” Mom asked.
Dr. Parker shook his head. “In order to transplant we’d have to get rid of the cancer first. You have to wipe everything out in order to plant new seeds. We need to try to induce remission, otherwise, even transplant isn’t an option.”
So we tried.
But no matter how many different or stronger or longer chemotherapies they threw at it, Sammy’s cancer didn’t seem to get any better. His body only shrivelled further and his symptoms only worsened.
We stopped counting the days. There was no more mystical Day 27 where things would be better. Instead we stuck to our routine, hoping for a miracle. For me that consisted of school followed by the hospital, school followed by the hospital, over and over and over again.
There were a few special days that stick out in my memory but even they didn’t seem so special. Mom’s birthday passed without anyone noticing it. Dad was always the one who made a big deal of it, reminding us to draw cards or make gifts, but either he forgot or just didn’t want to bother. There was a birthday party for a new patient put on by her parents, but Sammy couldn’t eat any cake so I just felt bad. Christmas was disappointing. Mom decorated the room and Dr. Parker showed up wearing a Santa costume but Sammy wasn’t feeling well enough to leave the room for the party in the games room so we stayed in our usual four-wall enclosure and exchanged gifts there.
Sammy was sitting on his bed wearing a Santa hat, the white fluff all but covering his eyes as he peered out beneath.
“Who goes first?” I asked, sitting next to him with a wrapped gift in my lap.
Sammy looked up at Mom like he’d forgotten his homework somewhere.
“Do you have it?” he asked her.
Mom handed him a small package the size of an egg. I could tell by the wrapping that Sammy had done it—there was about an entire roll of wrapping paper and two rolls of tape used to close it.
He handed me the tiny package. “You go first,” he said.
His eyes watched me closely as I unwrapped it. It took a while—I had to peel off the tape piece by piece—but when I finally got it open a keychain fell out into my lap. On it was a small coin the size of a quarter. One side of the coin was smooth silver while the other had a small painting of a bald eagle in midflight.
“Do you like it?” Sammy asked. “It has an eagle on it just like you. It was only fifty cents from the gift shop. Mom paid for it.”
“It’s great. I love it,” I said, but I felt a tightness in my throat as I said it. I leaned over and hugged him. “Thanks, Sammy.”
Next I handed him the gift from my lap. He needed Mom’s help getting it open and inside was a copy of The Headless Ghost.
Sammy looked at the cover.
“It’s a new Goosebumps book!” he exclaimed.
“Brand new!” I said. “It’s called The Headless Ghost and it just came out. I haven’t even read the first page or anything.”
“Will you read it to me?” he asked, handing me the book.
I pushed it back toward him. “Nope.”
He looked confused. “But I can’t read it.”
“Not yet,” I said. “But when you’re old enough to read I want you to read it to me. Until then, I’m not going to read it myself.”
Hope, I thought, don’t let him lose it.
CHAPTER 35
IT WAS SOME TIME SHORTLY AFTER CHRISTMAS THAT SAMMY’S condition took a sharp turn for the worse. His lungs began to hurt when he breathed, his legs became too weak to walk so we had to push him around in a wheelchair, his eyes never looked fully open and he hardly smiled anymore. Every part of him was falling apart bit by bit.
Dr. Parker sat across from Mom and Dad in our room while Sammy slept and I watched TV. I knew Dr. Parker had come to say something important because Mom and Dad hardly ever sat together anymore and they both looked nervous. I listened to what they were saying instead of watching Ninja Turtles.
“I wanted to talk to you about a plan,” Dr. Parker said. “As you know, the chemotherapies aren’t working. The cancer has continued to grow and at some point we need to start thinking about other options.”
“What do you mean, other options?” Dad asked.
“What I mean is, there comes a point when we need to stop fighting a losing battle. At some point we need to change our focus from trying to get rid of the cancer to keeping Sammy comfortable. As you know, the chemotherapies have side effects and if they aren’t working we’re only doing more harm by giving them.” Dr. Parker sighed, pushed his glasses up on his nose, and looked at my parents. “It is the consensus of the oncology team that the medications are not going to work going forward and we should consider making Sammy palliative.”
Palliative.
It meant we were done trying to treat Sammy’s cancer.
“But there are other things we can try,” Mom said, her voice sounding suddenly frantic. “There’s a trial going on in Georgia looking at a new medication that blocks a receptor or something important for the AML cells to grow. I have the article—” Mom’s hands shook as she reached for a book beside the bed.
“I know the trial,” Dr. Parker said. “It’s being run by an old colleague of mine. It would not benefit Sammy. The medication is only useful once remission has been induced. It is used to prevent relapses. It wouldn’t help Sammy.” Dr. Parker was shaking his head slowly and looking at the floor. I watched out of the corner of my eye, afraid that they would stop if they knew I was listening. Dr. Parker looked back up at Mom and Dad and continued, “We have already exhausted all the possible research trials that may benefit Sammy. We have gone through two medications still in the research phase and neither has worked. At this point, there is nothing more we can offer.” Dr. Parker looked like he was saddened by the sound of his own voice.
“Transplant,” Mom said. “What about a transplant?”
Dr. Parker shook his head.
Mom looked at Dad, her eyes wild with fear. “Then there are alternative therapies. Down in Mexico there’s someone offering a natural treatment for leukemia. It’s exp
ensive but—”
Dr. Parker raised his hand to interrupt. “If you wish to look into alternative therapies I won’t stop you. But I can tell you this, with Sammy’s cancer as it is, they will not offer a cure. They are expensive and poorly researched. Many are nothing more than a scam. If you wish to look into them, I’d be happy to help, but honestly, I think it is in Sammy’s best interest to start focusing on comfort measures.”
“We appreciate your opinion but—”
Mom stopped when Dad put his hand on hers. “Liz,” he said, his voice shaking in the back of his throat, “don’t you hear what he’s telling us? We’re just going to make things worse for Sammy. We need to focus on—”
Mom tore her hand away abruptly. “You!” she said, but the rest of the sentence didn’t come out. She stood up and started to leave. She turned back at the door, her eyes full of tears. Mom hardly ever cried in front of me, sometimes I’d see her wipe her eyes when we’d first walk into the room, but she wasn’t like Dad, she didn’t cry often. “You already gave up months ago,” she said, pointing at Dad, then stormed out of the room.
Not long after, Dr. Parker and Dad left too.
It was one of the few times I was happy Sammy wasn’t awake.
The next time I saw Mom and Dad was later that evening and when I asked what they had decided I knew from the quietness of the room what the decision had been.
Palliative.
It would become my least favourite word in the English language.
So I sat by for the next few weeks as my brother turned into a tiny trace of a human boy. His skin became yellow and his breathing raspy. He sounded like he constantly had something stuck at the back of his throat and the nurses would have to pinch his fingers to wake him up. I remember him being so small—so, so, so small.