Jeffrey thought about this for a moment, and said, Won’t they notice the box is too heavy when they go to put it away?
Good point, Jeffrey.
Steven, put your brother’s shoes on, will you? We have to get moving.
They’ll never fit me, Mom.
Har, har, very funny. Now let’s GO!
It wasn’t until we were all in the car, several blocks away from home, that I realized the random shirt I had put on was last year’s middle school band concert shirt. Perfect. It was easier than building and carrying a giant picket sign with the word “Geek” on it, but it achieved the exact same effect!
When we pulled up at school, I was pretty distracted, but I did notice that Jeffrey didn’t look so great. I came up with a new bargain with God: “If you make Jeffrey better, I won’t go to this dance.” Maybe God knew that right then, staying out of the dance didn’t feel like a big sacrifice to me, because he didn’t instantly cure my brother. I ruffled Jeffrey’s hair, told him to be good and not to play too much WWF Wrestling Live with his fragile mother, took a deep breath, and walked away into my big night.
Inside the dance, I found a bunch of my friends standing around in a corner. It suddenly struck me that the two worst social situations in middle school—dances and dodgeball—had a lot in common for guys like me. You go to the gym, stand in a corner as far away from the action as possible, and try not to be seen. Your eyes scan the room for threats—either flying projectiles aimed at your head or girls aimed at mortifying you by getting you out on the floor—and you sweat profusely while standing still. Also, you’re wearing clothing that embarrasses you, and you feel like everybody else is better at this game than you are. And in both situations, you desperately hope that some miracle will occur to bring you glory, but you’re too scared to attempt to do anything that might actually achieve any recognition.
Oh yeah, dances and dodgeball: the two Ds of my middle school nightmares.
Of course, looking around was kind of fun. Renee Albert was looking incredible in some kind of tightish shiny thing, and her little court of supergirls were all dancing together, flipping their hair around and occasionally stopping to do little fix-up things with their sparkly lip gloss. I remember wondering how I could be so awkward about this stuff, but these girls—raised in the same town as me, with basically the same exact social experiences I had—could be so cool.
Then Annette came bounding over to me. She was wearing jeans and a shirt like I was, but somehow the fact that we were at a dance made me too aware that she was female, so I felt weird talking with her. Plus, all of my guy friends were standing around, smirking.
Hi, Steven.
Hi, Annette.
Did you listen to that CD?
Uhhh…yeah.
Did you figure it out?
Uhhh…I did. And I have a drum lesson with Mr. Stoll tomorrow. I think I’ll bring it along so I can work on it with him.
OK, make sure you do, because I have big plans for you.
You do?
She just smiled and walked away. “Perfect!” I thought. “The girl of my dreams has no idea I’m in the room, even though I’ve sat behind her in every class since first grade, and Annette has ‘big plans’ for me.”
I stood around for a while more, listening to my friends’ moronic commentary about how Annette wanted to jump on me and make me her band-geek love slave, until my night took the final plunge into horror. My mother walked in. I didn’t see her at first, and I guess she didn’t spot me, so she had to get the DJ to stop the music and announce that Steven Alper’s mother was here to pick him up.
Right on the spot, without knowing what exactly was going on, I made God one final offer. “Take me. Don’t take Jeffy. Please, Lord. Take me.”
FEVER
If you’ve never been dragged out of a middle school dance by your mom while she’s wearing sweatpants and carrying your pajama-clad little brother over her shoulder, then you haven’t had the same kind of life I’m leading this year.
As she rushed me to the car at breakneck speed, my mom told me what was going on. We’re going to the emergency room. Your brother has a fever.
I looked at the top of Jeffrey’s sleeping head, and even in the dim school hallway lights I could see that his hair was all matted with sweat.
Why is that an emergency? What does it mean? Where’s Dad?
Dad is still at his dinner. I don’t know the name of the restaurant, and his cell phone must be turned off. Any time your brother gets a fever from now on, it’s an emergency. I don’t know what this means. Get the doors, please.
OK. Mom, is this serious?
I don’t know, honey. I don’t know. I wish I knew.
She must have thought the situation was pretty urgent, though, because she usually won’t leave the house in sweats, and I noticed she hadn’t even taken the time to put shoes on Jeffrey. Also, she’s the careful driver in our family on most days, but our ride to the hospital was like the Indy 500. I didn’t even have time to think of how in the world I was going to explain this away to my friends on Monday—I was mostly too busy trying to keep from passing out from the incredible g-forces every time we turned a corner. Somehow, Jeffrey didn’t wake up, but he was definitely groaning in his sleep. I reached over and crammed his blanket between his head and the corner of his booster seat so he wouldn’t get whipped around so much; my hand brushed against his forehead, and he was definitely ragingly hot.
The E.R. staff didn’t mess around at all when we got there. As soon as my mom said the word “leukemia,” there were doctors, nurses, and technicians swarming all over. The doctor in charge was barking orders like a Marine drill sergeant, with questions in between for my mom.
We’ll need a CBC and full differential. Do you know what his last counts were? When were those taken? Does he have a catheter? What kind? Take his shirt off. OK, access the Port-a-Cath. Make a note—we’ll need to run some heparin soon. Get the bloods first—we have to have those numbers.
As they started to take Jeffrey’s clothes off, he woke up. I guess he wasn’t surprised to find himself in a hospital—both he and my mother seemed to have become used to this bizarre world. I couldn’t even understand what the doctors and nurses were saying, but they were both clued in to this secret language. He didn’t say anything as they took his temperature orally, even though he used to always make a big show of choking when my parents did it at home. He responded to all of the commands that came his way—Tilt your head! Take three deep breaths! Lean forward, please!—with mute obedience. Until they laid him down, and went for his chest with a needle. Now, I knew that something had been done to Jeffrey’s chest in Philadelphia; I had seen the two lines of stitches and the round bulge under the skin of his ribs. But during the whole period up until that night, the medical stuff had only sunk in to a point; I only accepted what I had to accept to make sense of any given moment. So I only really knew that he was taking steroids every day, for example, when I saw him gagging down the syringes of bitter liquid in the kitchen every morning and night. And I guess now was my moment to believe in the Port-a-Cath, which was an IV tube that had been surgically implanted under the skin a couple of inches above Jeffrey’s right nipple.
Jeffrey pulled away from the doctor when he saw the needle and asked in a little pathetic voice, Can’t we do the emm-luh?
I didn’t know it then, but EMLA is a cream that makes your skin numb. They had been using EMLA so Jeffrey wouldn’t feel the hurt of the needle as it stabbed through his skin to get at the catheter in his chest.
The doctor’s voice softened then, and he almost whispered to Jeffrey, I’m sorry, buddy. The EMLA takes an hour to work, and we can’t wait.
Then the doctor half-turned to me, and asked Jeffrey, Would it help if your brother held your hand?
Jeffrey didn’t respond at all, but he looked at me, and his eyes were brimming. I am pretty squeamish about shots and blood and stuff, but what was I going to do? I grabbed his hand and let hi
m sort of lean his head on my shoulder without sitting up from his pillow. I started the “You’re OK, Jeffy” chant, and a nurse scrubbed the circle of skin over the port with yellowish-orange stuff. Then she broke open one of those sterile packets that needles come in and took out a truly large one, which was bent in the middle at a ninety-degree angle. Jeffrey started to whimper, and the tears began to soak the shoulder of my shirt, but he didn’t even flinch as the huge needle jabbed straight into his chest. The nurse taped the needle in place, and I closed my eyes. I heard someone say, “Flushing the port,” and then I got a little woozy. Jeffrey kept squeezing my hand really hard for a few minutes, until the blood specimens had all been taken and an IV line was hooked up to his port.
I think we both fell asleep for a little while. When I opened my eyes, the doctor was talking with my mom; neither of them noticed I was awake, so I just lay there and listened. Evidently, Jeffrey had what should have been a simple ear infection, but his white blood cell counts were low because of the chemotherapy drugs he was on, so his body couldn’t fight off germs very well. The doctor was saying that Jeffrey would need to spend a few days in the hospital, getting antibiotics through his IV line in addition to his regular chemo medicines. My mom didn’t look pleased.
Can we do this here, or does he—
He’ll be here until the morning. We’ll put him on a pediatric floor for now, but we’re going to have to transport him to Children’s Hospital in Philadelphia as soon as his fever is down.
Transport him?
Yes, we can send him in an ambulance, so we don’t have to stop his IV, or we can cap the line and have you drive him. I’ll consult with the specialists down there in the morning, and whatever they want to do—
Oh, God. How expensive is an ambulance ride?
I don’t know, but we have to do whatever is best for your son medically right now.
I understand. We’re just having some financial trouble with all of this. I’ve had to leave my job and…My mom started crying then. I’m sorry, Doctor. I just…it’s all been so sudden, you know? We have very good insurance. But this all adds up: the co-pays, parking, food, gas, tolls. And my husband isn’t really…taking it well, yet.
I hear you, Ma’am. He sort of patted my mom on the shoulder at this point. I’ll be back around in a few hours. We’ll be moving you all up to a private room any minute now, and then maybe you can try and get some rest.
Yeah, sure. My mom looked tired enough to sleep for a week, but I knew she wasn’t going to get any rest.
I got out of Jeffrey’s bed for the big move upstairs, and fell back asleep in a chair by the window of the new room. My mom spent a few hours lying on a cot they had brought in, but I really don’t think you could say she slept. Every hour or so some medical person or other came in to take Jeffrey’s temperature or attach a new bag to his IV or do something that would ruin our rest.
At 2 a.m., my mom walked out of the room. I wanted to know what was going on, so after a couple of minutes, I followed her. I found her sitting in the hallway, leaning back on the wall with her knees to her chest, holding a cup of coffee that must have come from the little coin-operated machine that was out there. I plopped down next to her.
Hey, Mom. How are ya?
I’m fine, Steven. I was really worried about your brother last night, but it looks like this is just…going…to be what life is like for a while.
Mom, how long is this all going to last?
They’re going to run some tests next week. If he’s cancer-free by then, he’ll still be in treatment for a few years. Then, who knows? After five years without cancer, he should be totally normal.
Mom, what if he’s not cancer-free next week?
I don’t know, Steven. I just don’t know. By the way, I’m sorry we ruined your night.
Mom, forget it. It was fine.
Oh, really? Fine, was it? Should I storm into your graduation wearing sweats, too?
Yeah, that would be pretty cool. Maybe you could have your hair up in curlers for extra style points?
I might be able to swing that, Stevie. And how about some flip-flops on my feet?
Excellent, Mom. That would be excellent.
Right there in the hallway, I put my head in her lap. She stroked my hair for a while, and then she sent me back into the room.
Get some sleep, pal.
At about 5:00 in the morning, my dad came into the room and shook me awake (I guess my mom had gotten through to him by phone at some point). He put a finger over his lips so I wouldn’t make noise and wake Jeffrey, but, of course, right when I was about to tiptoe out of the room, a lady came crashing in with the giant breakfast cart. So we had this odd little family conference while Jeffrey attempted to choke down some food. My parents spent a few minutes looking at Jeffrey’s hospital chart, worked out the details of what needed to be done if my mom and Jeffrey were going to Philadelphia for a week, and went out into the hall to argue about something. I had a little while alone with Jeffrey. He looked really exhausted, but his fever was gone, and he was much more alert mentally than he’d been the night before. He asked me about my dance. Did you have fun? Did you dance a lot? Did Renee Albert kiss you? Did it feel gross?
Get out of here, you little nutball. I’m telling you, I have zero chance of kissing Renee Albert. Zero. Zilch. Nada.
So who DID you kiss?
Nobody. I was just standing around with my friends when you came to get me.
Did I ruin your night?
Mom asked me that, too. Jeffy, you didn’t ruin my night. It was ruined from the start. You had a worse night than I did, anyway.
Oh, well. At least you didn’t have to kiss anybody.
Yes, Jeffy, that’s a big comfort to me.
My parents came back in, and I started to get up and leave. Jeffrey asked me for a hug, and I gave him one.
Take care, Jeffy. I’ll see you soon, right? Just remember not to throw food at the nurses. I don’t want to get any complaint calls, OK?
Steven, I don’t throw food at…oh, that was a joke, right?
Yup, buddy boy. It was a joke. But seriously, no kissing the nurses on their lips, either. It messes up their makeup.
Eeeeeeewwwww!
It was about 7 a.m. when my dad and I got home. I somehow made it to my bed and collapsed into a near-coma that lasted until I got too hungry to sleep through lunchtime. It was probably noon or so when I made it to the kitchen. My dad was sitting there, looking stubbly and worn-down, eating a bagel without much of an expression on his face. He gave me a tiny nod that was almost businesslike—totally neutral, like he wasn’t really seeing me. I got out cereal and milk, and it was so quiet between us that I was getting grossed out by the distinct sounds of our food-chewing processes. As soon as I finished, I went downstairs to play the drums. And play the drums. And play the drums. I played through all of the basic rudiments and then did all of my lesson pages for the week. Then I put five CDs in the changer behind my drums, put on my headphones, pressed SHUFFLE, and played along with at least ten really loud metal songs in a row without stopping.
I looked up in the middle of a Led Zeppelin drum solo, and my dad was sitting on the beat-up old couch about 8 feet in front of my bass drum. Because he startled me pretty badly and because I figured he was probably about 43% deaf if he had been sitting there a while, I jumped up and whipped off the headphones.
Uhhh…hi, Dad.
I just got the call from your mother. They’re taking Jeffrey to Philadelphia in about two hours. She wants us to get his stuff together for him. Do you know what toys and clothes he likes? Can you help me? My dad looked ashamed, like he had asked me to steal him a bottle of Jack Daniel’s or something.
Sure, Dad.
Hey, you’ve been down here playing for a while now. Are you all right?
I couldn’t believe my father was just now noticing me, and that I might be upset about my brother’s situation. I’m fine, Dad.
Oh, your mother thought you seemed u
pset at the emergency room and when they put the tubes in…
Dad, they didn’t just put tubes in. They stabbed him in the chest. They STABBED him!
I was stunned by what happened next, although I had to admit it was becoming a pretty common occurrence: I started to cry. And once I started, I couldn’t stop. My dad wasn’t necessarily going to win the Teddy Bear Society’s Father of the Year Award, but for the first time in weeks, he reacted. He put his arm around my shoulders and sort of squeezed me in. We must have stayed like that for a good twenty minutes, until I couldn’t postpone blowing my nose anymore. I picked my head up off of my dad, walked over to the other end of the sofa, got a tissue, and blew my nose. Then I sat right back down next to him. We stared at each other without having any concept of what to do or say next. My dad finally broke the silence with an old family punch line.
So, umm, how about those Knicks?
We chuckled awkwardly, but at least it was a chuckle. Then we went upstairs and packed up Jeffrey’s stuff. On the drive over to the hospital, I had an odd realization: This was the first time in weeks that I had laughed with each member of my family within a 24-hour period.
At the hospital, Jeffrey was looking fairly worried. My mom was out in the hall, arguing with the doctors in Philly on her cell phone. My dad stayed to talk with her, and I went right to my brother.
Hey, Jeffy, how ya feelin’?
I’m OK. We had moatmeal for breakfast, but it wasn’t as good as yours. I’m scared.
What are you scared about?
Mommy said that they might have to do another bone narrow tomorrow. It was supposed to be next time, but now it’s tomorrow. The bone narrow HURTS. And I might still be very sick if they give it to me early. They said they would do it in a month and all the bad blasts should be gone. But what if they aren’t gone yet? Then they have to give me more throw-up medicine. It’s NO FAIR!