The day went on with an unlikely combination of boredom, anxiety, and bland food that you only find in hospitals. By early evening, as Jeffrey was dozing off and my father was talking with yet another medical person about something, I couldn’t stand to be sitting in the room anymore. I grabbed my sticks and pad and set out in search of a private place to practice. In a hidden little alcove at the very end of the hall, I found a tiny room with washers and dryers. I guess it was there so families could do their laundry during long stays, but I had my own mission going on. I sat on top of the washer, put the pad on top of the dryer, hooked the door shut with an outstretched foot, and started running through my rudiments. It felt great to be concentrating on myself again, and the mindless repetition was relaxing; I must have played for about forty-five minutes nonstop. Then somebody banged on the door, which startled the heck out of me. I half-jumped, half-fell off of the washing machine. As I reached for the door, I dropped my sticks with a massive clatter. At the same moment, I realized I had once again bitten my cheek in the exact same place and that it was bleeding like a stuck pig. I swung the door open with a semi-angry “WHHAAATTT?” Guess who was standing there, looking somewhat taken aback by the blood-drooling, shaved-headed madman in the closet? The girl I had seen that morning. She was wearing jeans and an Aéropostale sweatshirt instead of the robe, but those eyes were unmistakable.
Ummm…hey. I didn’t mean to bother you. I just wanted to see what was going on; there’s not much action around here at night.
Yeah, I’d noticed. I’m sorry I yelled. I just kind of zone out when I’m playing.
I listened for a while before I knocked. You’re very fast. Hi, I’m Samantha.
Hi. I’m Steven. My brother Jeffrey is…
Yeah, everybody here knows Jeffrey. He’s quite a character. Did he tell you about the time he kissed the night nurse?
Oops.
Anyway, he talks about you all the time: Steven the Rock Star. So when I heard the drumming, I kinda figured it might be you. By the way, did you know you’re bleeding?
Uhhh, yeah. Do you want to come with me to get some ice?
Sure. There’s a snow-cone machine on the other end of the hall, but it’s not as good as…
The one on the third floor. I’ve heard.
So we got our snow cones and sat in the little kids’ play lounge to talk. At some point, my dad saw me there but kept walking into Jeffrey’s room. Nobody interrupted our conversation, and we talked until after midnight. I told her everything about my year—Renee, Annette, drums, school, Jeffrey, Jeffrey, and Jeffrey. And she told me everything, too: Just like Jeffrey, she had ALL. But unlike Jeffrey, she had had two relapses of her leukemia in the past four years. Now she was tired all the time, she rarely got to leave the hospital, and her bones were starting to ache every minute of every day. Things didn’t look good.
How is your family doing with all this?
Well, my mom is a single parent, and we almost never hear from my dad. I have one older sister—she’s away at college. We used to be really, really close. I still call her on my cell phone every few days, but she never stays on long. She hasn’t visited me here since Christmas, but she promised she’d fly home in May to see me for my birthday. I hope she does. It kind of sounds stupid, but when I was little, I tried to do everything just like her. She used to love ice-cream cakes, so I loved them, too. For a couple of years after I got sick, she used to bring me an ice-cream cake on my birthday. Last year, she couldn’t make it home. I mean, she had a good reason and everything—it was finals time at college—but it sucks having hospital cake for your birthday. It really sucks.
I’m sorry.
You don’t have to be sorry—you didn’t do anything wrong. You’re HERE for your brother.
Well, I guess I am, but I get mad at him sometimes, and I haven’t been here with him before today.
Well, you’re here for him now. Believe me, that counts for something.
We talked for a while more after that, about all kinds of stuff: music, the opposite sexes, school (although she had been absent for months and had switched over to a tutor at the hospital), family. It’s funny—I always think my life is so massively boring, but she wanted to know every little detail. It was like she was so hungry for a normal eighth grader’s experiences that she needed to drink in mine. Every once in a while, especially as it got later and her last dose of painkillers wore off, she would flinch for a second, but her eyes never lost the intensity I had noticed earlier. At some point, we both got really sleepy, but nobody wanted to break the spell that encircled our little couch amid the rainbow-colored animals and crayon boxes. Finally, a nurse came in to give Samantha a cup full of pills, and things changed. When the nurse walked back out, the mood had vanished, and we were just two bald kids on a sofa.
We started that whole “I…uhhh…ooohhh, look at the time” thing that grown-ups always do when they’re breaking away from an awkward encounter at the supermarket. Before we went our separate ways, though, Samantha had one more thing to tell me.
Stay with your brother, Steven. Stay with him. No matter what. Do you promise?
What was I going to do? I promised.
As Samantha turned to start her slow walk back to her room, I had a last idea. I ran after her, told her to wait right there, charged down the hallway to the laundry room, got my drum stuff, and galloped back.
Here, Sam. I want you to have these sticks. They’re my favorite pair for practicing: Pro-Mark 5A hickory with nylon tips. Keep ’em, and maybe I can give you lessons when I come down. Would that be cool?
Steven, thank you. That would be great.
Happy early birthday, Samantha.
Happy early birthday, Samantha.
I’M A MAN NOW
The next day was really busy, with Jeffrey’s treatment and a million and one doctors coming into the room. So I didn’t see Samantha at all through the whole morning and afternoon. I was planning to stop by her room and say good-bye, but I got distracted on the way out. I overheard the main guy, Dr. Moses, giving my dad a pretty strong warning as we were getting ready to leave.
Listen, Mr. Alper, I’ve been on and off the phone with your son’s pediatrician all morning. I’m concerned about Jeffrey’s hepatic function. His ALT has climbed sharply over the past week, and I want Dr. Purow to keep an eye on your son’s blood counts and transaminase numbers for the next couple of weeks—if the AST climbs, too, we’ll need to know about it. Of course, we’ll be running our own tests every week here, but liver trouble is nothing to mess around with, and I want to be extremely cautious as long as Jeffrey is on such high doses of 6-MP and methotrexate.
I’m sorry, Doctor, but my wife is the one who has been handling all of the medical stuff so far. Can you explain that?
OK, “hepatic” equals “liver.” The liver’s job is to filter the blood. When a child is on as many heavy-duty chemotherapy drugs as Jeffrey is, the liver takes a beating. We check the blood levels of certain enzymes periodically in order to make sure that the liver is handling the strain adequately. If the liver begins to sustain damage, the enzyme levels should theoretically give us some warning. Then we have to adjust the patient’s meds until we get the chemo regimen in balance with the patient’s liver function. Otherwise, there is a risk of liver failure, which can be fatal.
That was just peachy. “THEORETICALLY give us some warning.” Sheesh!
So Jeffrey’s liver tests aren’t…uhhh…so good right now?
They’re really not great.
So what do we have to do?
You’ll need to bring your son to a lab for blood work three days from now; Dr. Purow has all the details. That’s routine in a case like this. Just to be on the safe side, keep this in mind for the future: If you think Jeffrey is looking at all yellow, in his skin tone or around the eyes, bring him in immediately. Also, as always, if he suddenly spikes a fever over the next few weeks, he will be in need of urgent care.
Urgent care?
Yes. You will need to drop everything and get him to the E.R.—no matter where you are, no matter what you are doing. Got it?
Yes, Doctor.
One more thing, Mr. Alper: Don’t worry. You have a coordinated team of doctors monitoring this situation very closely.
You have to love it when the doctor lays all this horrific stuff on you and then tells you not to worry. It’s like saying, “Here’s thirty-seven pounds of assorted chocolates. Try not to think about food, though.” Or “Look! There’s Renee Albert in a bikini. But please try to keep your mind on algebraic functions.”
So you can see why I didn’t have time to drop in on my new friend, Sam. As we were walking out of the ward with all our stuff, I heard some clicking sounds; she was trying out her new drumsticks. I was hoping that I really could give her a lesson next time I came down with Jeffrey. And, thanks to her, I was sure there would be a next time.
In the car on the way home, my dad didn’t say much until we got clear of the heavy Philadelphia traffic and Jeffrey fell asleep.
Then he turned to me and said, Look, ummm, I want to thank you for coming down to support Jeffrey. Maybe I haven’t been saying it, but I’m really very proud of you. You’re turning into a good man.
Wow! “A good man.” You caught that, correct? Steven is a man now. Quick, somebody tell all the chicks and babes at school for me!
And I’ve been thinking about this concert thing. I know how much your music means to you, and I also know that you will be doing this for the right reasons. So even though I really don’t think we need the help, you can go ahead with it. I’m not sure I’ll be able to go, with all the tax work I have to do this month and all, but I’m behind you in your decision.
YOU AREN’T GOING to my concert?
I’m just not sure, Steven. I have a lot to get caught up on, and you know that these last few weeks before April 15th are crunch time for accountants every year. I’ll, uhhh, I’ll do my best.
My first thought when he said that was, “Wonderful. Now that I’m a man, my dad can weasel his way out of going to my concerts. What next? Maybe he’ll stop buying food for me, or rent out my room.”
Then, for possibly the first time since all of this had started, I stopped feeling sorry for myself and thought of other people’s situations. It could have been worse: I could have been Annette, who had practiced all year for a concert she wouldn’t play in, or Sam, who might be dying all by herself in the hospital while her sister parties it up at college. Or Jeffrey.
Speaking of Jeffrey, you should have seen how my mother charged straight to him when we pulled into the driveway. I guess she had gotten her strength back while we were gone, because she lifted Jeffrey up in a rib-crushing hug until he practically begged her to let him down. I guess I was still in my new, manly sympathetic mood, because normally I would have been standing around saying, “Ahem,” until my mom noticed me, too, but that day I just looked at her with a new appreciation. This woman had spent nearly half of her time this year at the hospital with her son, praying for him, watching over him, comforting him, handling all of this overwhelming cancer stuff. And suddenly, as she reached out and squeezed my arm, I realized without any shadow of a doubt that she would have done the same for me.
Maybe you’ll think it’s nuts that the brother of a cancer patient would feel lucky, but at that instant, I most surely did.
The next three weeks of school were absolutely nutty. Annette and Renee both insisted on tutoring me in the subjects I had missed during my two days in Philadelphia. I let Renee in the house this time. They also insisted on updating me daily on the progress of the benefit concert, to the point where the details were just too much: “The posters are up all over town. We called the newspaper; they said they’ll send a reporter to the last rehearsal and the concert. The high school band has already sold 286 tickets. Your brother’s school took out a full-page ad in the program. Dexter’s Auto Body bought a double-page spread…” I was half-expecting them to tell me how many lightbulbs the high school stage had, what colors the bulbs were, how much heat they gave off in kilojoules, and whether that was greater than or less than the total caloric output of the school cafeteria on any given day, with and without the snack line. But I knew they meant well and that in a sense they were doing all of this for me.
My teachers and fellow students were all over me, too. “I bought a ticket to your concert.” “I bought two tickets to your concert.” “I bought seven tickets and rented six strangers and a minivan for the night.” Again, everybody meant well, and I was really hoping that the money this raised would take a load off of my parents’ shoulders, but the intensity of all the attention was pretty high. I just couldn’t wait to actually get up there and play the drums for all these people—that was the part I was living for, anyway.
And if excessive amounts of rehearsal time were any indication of success, we were surely destined to go down in jazz history. There were practices four days a week for the last few weeks. In fact, if I had spent any more time with the van driver (who was bringing just about everyone she knew to the concert), I swear I would have started calling her Mom. Plus, I was still taking lessons on Saturdays from Mr. Stoll (who was bringing seven students to the concert), AND practicing on my own, both at home and during my opportunity periods at school. AND I was doing all of my homework. My math teacher (who was planning to bring a small army of anal-retentive, calculator-carrying, math-teacher children to the concert) even commended me for my improved work habits.
Speaking of improved work habits, I was also spending a ton of time reading. Mrs. Galley (four tickets, one booster ad) had called me down right before my big trip to the hospital with Jeffrey. She’d said she just wanted to check in with me, but then she’d immediately pushed the candy dish my way, so I knew there was a heavy topic on the agenda. It turned out that she had ordered a book for me to read, about childhood leukemia and its treatment. She said she thought it might help me to “process my feelings.” I thanked her, snatched up some candy hearts, and walked out with the book under my arm. At the time, my thought was, “Yeah, like I’m really in the mood to read a book about this when I’m living it 24/7 already.”
But after we got back from the hospital, I had picked up the book again, because I truly did want to understand what was going on with my brother and with Samantha, too. It was about six hundred pages long, but I was already halfway through. And somebody else had been reading it every night after I went to bed: my dad. I think reading it was helping both of us. It was like Mrs. Galley had said, “I want to leave you with one thing to think about: Instead of agonizing about the things you can’t change, why don’t you try working on the things you can change?” We couldn’t change the fact that Jeffrey was sick, but we could make sure we knew what was going on. And if there was one thing I’d finally figured out, it was that your mind is something you always CAN change.
And so, everyone was rallying around Jeffrey. Everything was going well. Jeffrey’s next three hospital stays were uneventful, and his blood counts and liver-function tests were steady—not great, but steady. Life was going about as well as could possibly be expected, right up until the day of the concert.
ROCK STAR
As fate would have it, the last time I ever had the Dream was early in the morning on Friday, April 4th. That was the day of the concert, so it might have been nice to have slept well—but by the time I had showered the Dream away and headed downstairs for breakfast, I was so nervously hyper that there was no way a lack of sleep was going to slow me down. I would just have to crash on Saturday.
My mom and Jeffrey were down in Philadelphia, but they were due to get back in time for the concert. My dad and I had never spoken again about his choice not to attend the concert, but I know my mom and he had had at least one “discussion” about it—the kind of discussion that rattles your teeth, that you can’t help overhearing no matter how loud you crank your Discman. So that morning, when the issue was on both of our minds, he and
I didn’t have a single safe word to say to each other. It was weird being so nervous and so quiet at the same time, but as soon as I got to school, the “quiet” part became a memory. Renee assaulted me in homeroom with a copy of the program in her hand. It was thicker than any school program I had ever seen, with a beautiful, glossy cover shot of the band onstage. When you opened the program, there was Jeffrey. His kindergarten photo was blown up nearly to full-page size, and beneath it, there was a statement in neat black calligraphy: “All proceeds from tonight’s concert will benefit the Jeffrey Alper Medical Trust.” Simply unbelievable. Thanks to the amazing brains of two girls, Jeffrey had gone from being a regular little kid to being a “Medical Trust.” I had to admit, despite the strangeness of the whole thing, Renee and Annette had done an incredible job with the whole project.
When the homeroom bell rang, Annette came rushing in to give me the latest totals on box office receipts and the profits from the program ads. As soon as she and Renee were standing together, I noticed that they had both gotten really short haircuts. REALLY short haircuts. But you know me by now—I just chalked it up to coincidence, thanked them for all their hard work, answered a few questions about Jeffrey, and went to class. That day, Miss Palma (three tickets and a gigantic basket of cookies for the bake sale) was showing a movie based on the last book we had read, so, of course, I spaced out completely. I couldn’t even tell you what I thought about, but I’m pretty sure it wasn’t Homer’s use of foreshadowing in the Odyssey. Mostly, I think, I practiced playing the All-City songs in my head. Somehow, between Miss Palma saying, “Please take note of the dramatic irony in this scene,” and my brain saying, “Bip bop dit dit doo-wah,” I got through the class. The whole day was like that, but eventually even a Friday at middle school has to come to an end. The last bell rang, and I started to head out for the bus. Then the intercom in Mr. Watras’s room buzzed, and I got called to the office.