UNTIL ANGELS CLOSE MY EYES
Chapter Seventeen
July, 2001
Jack sat with his back against the
trunk of an old tree, his sketchpad on the ground beside him. He blinked
sleepily in the North Carolina heat, then stretched, wincing a little at the
aching in his joints.
This was the fourth summer he’d
gone to camp at Jenny House, a camp for sick kids. He had first heard about it
when he’d gone in for his first check-up after getting out of the hospital in
1998 and had seen a brochure for it in the doctor’s office. Jack had never been
to a real camp before—he’d gone on a few camping trips with his parents and
with Cub Scouts when he was younger, but never to a real camp far from home—and
the idea of going to a camp for sick kids had caught his interest.
He had begged his parents to let
him go after looking it up on the Internet and finding that there were still
openings for campers for that summer. James and Lorraine had been reluctant to
let him go at first after what he had been through in the past year, but after
they had confirmed that the camp had several medical professionals on staff,
they had allowed him to go, though not without reservations. Jack had never
been so far from home without them before, and he had been dangerously ill with
the leukemia for months.
Everything had been fine, though.
He had been able to take the medication he needed without any problems, and
after the first year, his parents had allowed him to fly to North Carolina
alone, though he knew they still worried about him.
It had been a change of pace for
Jack to be around kids who knew what it was like to be really sick. Not all of
them had cancer—there had been quite a number who suffered from other
problems—but they all knew what it was like to live with a serious illness, to
know that being young didn’t protect them from illness, pain, or death—unlike
many of the kids his age, who had little or no concept of what it meant to be
really sick, and who had singled him out because of his illness.
After Jack had gotten out of the
hospital, he had tried going to school for the last few weeks of the year, but
the other kids had stared at his bald head and skinny body and had whispered
and laughed behind his back. He’d hated walking into a room and having the
other kids stop talking and turn away from him. Some kids who had been his
friends before didn’t know what to say to him and had avoided him, and in spite
of what the teacher had told them about cancer not being contagious, some kids
avoided him for fear of getting sick themselves.
Jack had hated the whispers and
laughter almost as much as he’d hated the rude remarks that some kids made to
his face. Other kids had asked questions, many of which he hadn’t known how to
answer or didn’t want to answer. Not all of those asking questions had done so
to be mean or to pick on him—some were genuinely interested or concerned about
him—but he’d hated it. After all the months of treatment, he’d just wanted to
get back to living a normal life, but the taunts from the other kids and the
constant stares and questions had made that impossible.
He’d stomped in the door after
school one day, baseball cap pulled low over his eyes, trying not to cry after
all the unkind remarks from the other kids, and when James had come home an
hour later, Jack had exploded, flatly refusing to return to school and then
shutting himself in his room. It wasn’t until later, after his mother had come
home from work, that Jack had allowed his parents to come into his room and
told them what was going on at school. He’d tried to hide how miserable he was,
but the taunts and laughter, combined with the fact that he felt stupid because
he hadn’t been able to keep up with the rest of the class, had finally gotten
to be too much for him, and he had refused to return to school ever again.
His parents had talked to him,
offering to call the school and see if someone could talk to the kids who’d
been picking on him, but Jack had refused, knowing that that would just make
them pick on him more. Finally, they had agreed that he could skip the last
week of school—they knew he wasn’t going to pass the sixth grade anyway—and had
put in a request to have him enrolled at a different elementary school the
following year, where fewer kids would know what he had been through.
Jack had repeated sixth grade the
following year at Perris Elementary, half a mile geographically and a world
away socially from Nan Sanders. In spite of still needing medication and
maintenance chemotherapy, he had done well that year, finishing near the top of
his class, and when he’d entered Pinacate Middle School in the fall of 1999,
the kids who had known him during his first year in sixth grade were scattered
around the larger school, and some had moved away. Though some had still made
remarks or avoided him, he was in different classes from most of them, and he
had learned to ignore them, making it far less fun for them to tease him.
This coming year, he would be a
freshman at Perris High School. He was already fifteen, older than most
freshmen, but not the only one who’d been held back in school. He’d made some
friends who would be going to the same school, and he was looking forward to
starting high school.
To make things even better, he’d
finished with his medication and maintenance chemotherapy two months ago, and
now only had to go in for tests every so often to make sure he was still in
remission. He’d been in remission for over three years, and things were looking
good.
At least, he hoped things were
looking good. He’d been more tired lately, with sore joints and unexplained
bruises, but when his parents had questioned whether or not he was well enough
to go to camp, he’d insisted that he was fine. It was perfectly normal for
teenagers to sleep the day away when they could get away with it, wasn’t it?
And as for the sore joints and bruises, he’d discovered the joys of wandering
the hills and climbing rocks—not that he’d shared his penchant for
rock-climbing with his parents—and a few pulled muscles and bruises from
slipping on steep rocks and trails were to be expected.
He kept telling himself that,
even when he had arrived at camp and still didn’t have the energy to do all the
things he’d enjoyed the past few years. His joints continued to ache, and a few
new bruises had popped up, but he continued to tell himself that everything was
normal. After all, wouldn’t the doctor have told him if his last tests had been
abnormal? He knew that the type of leukemia he’d had could come back quickly,
but he didn’t want to believe it could happen to him, even though he knew other
people it had happened to.
"Hey, Jack! Come on!"
His counselor, Andy, waved to him, gesturing for him to join to the others.
Jack got up slowly and
reluctantly, rubbing his aching left elbow, which he’d made worse by smacking
it into a doorframe that morning. He didn’t particularly want to move—he would
much rather have sat under the tree for a couple of hours, or better yet, taken
a nap—but Andy wanted him to join the others at the lake.
Jack picked up his sketchpad and
walked slowly towards the others. Usually, he loved swimming, but today he
wasn’t looking forward to stripping down to his swim trunks and letting
everyone see the colorful bruises on his legs and torso. Not many people would
make fun of him—a lot of them had scars, discolorations, or missing limbs that
made them stand out—but he didn’t want anyone asking him if he felt okay. He
wasn’t feeling entirely right, and for that reason, he didn’t want any
questions. If no one asked questions, he wouldn’t have to admit to anything.
Unfortunately, since he’d already
been acting tired for several days, questions were inevitable. Andy, a fellow
leukemia survivor, caught sight of his bruises as he was trying to hurry into
the water.
"Jack, are you okay?"
Jack waded out until the water
came up to his waist, then crouched down so that only his head was showing
before answering. "I’m fine."
"Are you sure? Because
you’ve got an awful lot of bruises—"
"I said I was fine!"
Jack snapped, then immediately felt contrite. "Sorry. Didn’t mean to yell.
I just stayed up too late last night and now I’m kind of tired."
"Yeah, it would be nice if
you guys would at least try to fall asleep before one in the morning,
especially seeing how early we have to get up. I’m not as young as I used to
be."
"Not as young as you used to
be? You’re only two years older than me!" Jack retorted, glad to have
gotten him off the subject of his health.
"Yeah, but I’m responsible
for you guys. Catch!" He threw a beach ball at Jack, who ducked.
"Missed me!" He
laughed, swimming farther out.
Andy laughed, too, but then
turned serious again. "Jack, if you’re not feeling well, or if you have symptoms
you think might mean something, you can always see the doctor here. You know
that, right? Nobody’s going to yell at you."
"I know, I know. And if I
feel sick or something doesn’t seem right, I’ll go to the doctor. But right
now, I feel fine. I just want to swim for a while."
Andy sighed, looking at him
skeptically. "Okay, Jack. But if you have any doubts at all…"
"I’m fine. My last tests
were normal, and I have my regular appointment a couple of days after I get
home. I don’t even have to take medication anymore. C’mon, leave me alone
already."
Jack ducked under the water,
swimming farther out, before Andy could reply. He didn’t want to be questioned
about his health. He was fine, and he planned on staying that way.
*****
To the surprise of everyone but
Jack, he fell asleep early that night. It was barely ten o’clock when he dozed
off, more exhausted than he cared to admit. In spite of the talking, laughing,
and occasional obscene joke, he lay back and closed his eyes, just for a
minute, he thought, and was quickly sound asleep.
He didn’t awaken until three AM,
when one of the other campers shook him awake, reminding him of the prank
they’d been plotting since the beginning of camp.
Jack opened his eyes blearily and
squinted at him in the dark cabin. "What?"
"C’mon! Andy’s asleep,"
he whispered.
"So?"
"So, now we can go
‘decorate’ the mess hall like we’ve been planning? Remember?"
"Oh, yeah." Jack had
been plotting with the rest of the cabin for several days, but right now he
didn’t feel like getting up.
"Well, come on! We gotta
hurry! Everything’s hidden under Deshon’s bunk." He pulled on Jack’s arm,
getting a groan of pain in reply. "Quiet! We can’t let anybody hear—"
"What’s going on?"
There were several groans and mumbles as Andy’s voice sounded in the quiet
cabin.
"Uh…nothing. Nothing."
Andy flipped on the light,
causing most of the campers to duck and shade their eyes. He looked at them
critically, already suspecting what they were up to—he’d pulled a few pranks
himself before he became a counselor.
"Deshon, what are you trying
to hide under your bed? And Pete, why are you trying to pull Jack out of his
bed?"
"Uh…n-nothing," Deshon
stammered, trying to hide the stash of toilet paper, silly string, and shaving
cream under his bed. He looked at the others, who were trying to look innocent,
except for Pete, who was trying to push Jack back into his bunk.
Jack hissed in pain when Pete
tried to push him back into his bunk, which he had half slid out of when Pete
had pulled on his arm. "Let go of me!" He pulled himself back into
bed and sat up, rubbing his sore elbow. "Damn."
Pete looked at Andy, trying to
think of an explanation that wouldn’t reveal the prank they’d had planned.
"Uh…well…Jack was snoring real loud, and I was trying to wake him
up…"
"I don’t snore!"
Pete sent Jack a look that
clearly said shut up. "And…uh…I think he’s got a fever…"
Jack gave Pete a nasty look.
"I’m fine."
"You do look
glassy-eyed." Andy put a hand on his forehead, ignoring Jack’s attempt to
back away. "Let me get the thermometer. I think you do have a fever."
"I’m fine. It’s just hot in
here."
"It’s not that hot."
Andy got the thermometer from the first aid kit, sterilized it, and handed it
to Jack. "Under your tongue."
"I don’t need it."
"Jack, just do what he
says," Deshon said from the next bunk. Jack’s stubbornness about medical
care was well-known to those who’d known him for a few years.
Jack stared at the thermometer
for a moment more, then finally sighed and put it under his tongue. He hated being
fussed over like this.
When the thermometer beeped a
moment later, he took it out of his mouth and handed it to Andy. "See?
Nothing to worry about."
Andy looked at the thermometer.
"One-oh-three point two. I’d say that’s something to worry about."
"It’s not that high. I’ve
just got too many blankets on."
Andy looked doubtfully at the
single sheet—the rest of the bedding was at the end of the bunk. "I don’t
think so, Jack. Get up and get dressed. I’ll call the nurse and have her meet
you at the infirmary."
"But—"
"Now, Jack!"
Jack got out of bed slowly,
mumbling swear words under his breath. "I feel fine," he mumbled.
"That thermometer’s probably defective."
"The nurse can judge that,
and the doctor if you need him."
"I’d rather just
sleep."
"Jack…" The
fifteen-year-old was severely trying his counselor’s patience. "Now!"
"All right! I’m coming! You
don’t need to be that way!" Jack muttered a few more unflattering words
under his breath.
"I’m just going to assume
that it’s the fever and whatever else might be wrong talking, since I know you
usually act better than this."
"He’s always that way when
somebody tries to take care of him," Deshon pointed out. "He don’t
like being fussed over."
Jack protested a little more,
just for effect, but he was tired and was running out of energy to argue.
Grouchily, he put his shoes on and followed Andy towards the infirmary, his
legs feeling heavy from the fever.
*****
Dr. Byrd stood beside Jack’s bed
in the infirmary, listening to his heart and lungs. The nurse had called him in
after she’d taken Jack’s temperature and gotten a look at the number of bruises
marring his limbs and torso. When Jack had reluctantly admitted that his
joints—especially his knees and elbows—hurt, too, she had made him lie down to
wait for the doctor.
Jack had been too tired to give
even a token protest by that time, so he’d done as she’d said and had promptly
fallen asleep again. When the doctor had arrived a few minutes later, Jack had
been more annoyed about being woken up than about being examined.
Sleepily, he tried to explain
what he thought might be causing the symptoms—staying up too late, pulling
muscles, running into things. He even suggested that the fever might be caused
by the flu, though flu season was several months away and Jack’s parents had
made sure he got a vaccine every year since he’d developed leukemia.
Dr. Byrd listened, but was fairly
certain that none of Jack’s symptoms were caused by the things he’d mentioned.
"You can stay here
tonight," he told him, "but in the morning we’re taking you to the
hospital for some tests, just to be safe."
"My last tests were
fine."
"Yes, but acute lymphocytic
leukemia can make an abrupt return sometimes, and I want to be sure that isn’t
the problem now."
"I sure hope it’s not."
"For your sake, I hope it’s
not, too."
*****
"I have to go home?"
Jack looked at Dr. Byrd in disbelief. "Why do I have to go home?"
"The test results were
positive. Your leukemia has relapsed, and you need to start treatment as soon
as possible."
"But it’s just a few more
days."
"I know, but your doctor in
California wants to see you right away and get you back into treatment."
"But my plane ticket isn’t
valid until the end of camp."
"Your parents are taking care
of that, and your dad is flying out here tonight to take you home."
"But after I leave here,
we’re supposed to go to Wisconsin to visit my relatives. We’ve been doing that
every year since I got into remission."
"It doesn’t look like it’s
going to work out that way this year. I know this isn’t what you wanted to
happen, but it’s important that you start treatment as soon as possible to
increase your chances of going into remission again."
Jack’s face took on a sullen
look. "It’s not fair."
"Cancer is never fair, but
sometimes you have to take care of it before you worry about anything
else." Dr. Byrd patted Jack’s shoulder. "Andy is getting your things
together so you can leave when your dad gets here."
"I don’t want to leave
yet."
"I know, but you don’t have
much of a choice. A relapse needs to be taken seriously. It can be harder to
get into remission the second time, so you need to start treatment soon."
Jack sighed. He wanted to argue,
to ask if the tests might be wrong, but he was tired, and he knew that no
amount of arguing was going to change the diagnosis. The leukemia was back, and
he needed to go back to California and get the treatment started again if he
was to have a chance to survive.
When Dr. Byrd left, Jack lay back
against his pillow, putting an arm over his eyes to hide the sudden rush of
tears.
It isn’t fair. It isn’t
fucking fair. I just got through with the maintenance treatment two months ago,
and now the leukemia is back. I have to go through all that again, and I might
not even get into remission this time. It’s harder to get into remission the
second time—I’ve known some people who died when they got leukemia a second
time. Some people like Andy have survived it twice, but he got a bone marrow
transplant from his sister. I don’t have any sisters or brothers.
Am I even going to survive? I
don’t want to die—I’m only fifteen. I haven’t even started high school yet.
Dammit, I hope I get to go to high school. I hope I don’t get held back another
year if I do get better.
Jack rolled over and buried his
face in his pillow.
I hate this disease! Why did
it have to happen to me? Why not one of those kids who picked on me? Stupid
fucking cancer!
It just isn’t fair.
*****
Jack sat next to James on the
plane, en route from North Carolina to California. Lorraine would be meeting
them at Ontario International Airport at six o’clock in the morning.
He had been a bit embarrassed to
have his dad picking him up from camp early, but he hadn’t said so. It wasn’t
his dad’s fault he’d relapsed, and by the time James had arrived at Jenny
House, Jack had been feeling ashamed of the way he’d treated his counselor and
his friends and wasn’t in the mood to be obnoxious to anybody.
He’d apologized to Andy when he’d
brought him his belongings, and had been surprised at how understanding his
counselor had been. Andy had been through the same thing—a relapse of leukemia
after several years in remission—and he knew how frustrating and upsetting it
could be. He also realized that Jack hadn’t been feeling well when he’d been so
obnoxious, and that a fever could make a person behave differently than they
normally would. Jack still felt bad about how rude he’d been to him, but he was
glad that Andy was willing to forgive him.
Now, Jack sat next to his dad,
his head against the back of the seat and his eyes closed. There was very
little turbulence on this flight, for which Jack was grateful. All too soon,
he’d be suffering the miseries of chemotherapy again, and he didn’t want to
experience airsickness now.
"How are you doing,
Jack?" James’ voice was quiet, as many passengers were sleeping.
"Okay, I guess." Jack
was silent for a moment before turning to James. "Dad, why did this have
to happen? I’ve been in remission for over three years, and now…I relapse all
of a sudden. It’s like the leukemia was just waiting to come back."
"I don’t know, Jack. All it
takes is one bad cell to start it up again."
"I know, but…dammit! I took
my medicine like I was supposed to and got the maintenance chemo and all the
tests, and now it decides to come back. How come the tests didn’t pick it up
last month, before I went to camp? How can it come back so quickly?"
"It may be that it’s been
coming back for a while, but it wasn’t detectable yet. Like your doctor said,
those tests aren’t foolproof—that’s one of the reasons you’ve had to go in for
them every month. If the test misses a relapse at first, it can catch it the
second time before you have time to get really sick."
"But I did get sick again.
Not really, horribly sick, but still…"
"I don’t think you were
felling really well when you left for camp. You did seem tired a lot."
"Yeah, but…I didn’t want to
think I might be relapsing. I thought of all kinds of things that could make me
tired and everything. I didn’t want it to be leukemia." He looked down,
toying with a string hanging off his shirt. "Dad, what did I do to deserve
leukemia?"
James was taken aback at the
question. "What did you do to deserve leukemia? Nothing. Nothing, Jack. You
know that. There was nothing anyone could have done to prevent it. It’s in your
genes. Your birth mother was suffering from leukemia when she died—she’d
delayed treatment so she could have you—and your grandfather died of leukemia
in 1975, when your mother was only nine. And he probably got it from exposure
to radiation from nuclear testing when he was growing up in Utah in the
fifties. Your aunts and uncle on your birth mother’s side of your family are
lucky—they’ve shown no signs of leukemia, though after they found out about
your diagnosis, they’ve had screenings for it…they know they’re at high
risk."
Jack looked out the window.
"It just seems like maybe there’s something I should have done to keep the
leukemia away. Maybe if I’d done something different, I never would have gotten
it in the first place."
"What could you have done?
You were eleven years old when you first got leukemia. You didn’t know anything
about genetics—and you couldn’t have changed your genes if you had. You can’t
change them now. Who are you going to blame—your mother, who delayed her own
treatment because it would have killed or seriously damaged you? Your
grandfather, who had no choice about where he grew up? Your great-grandparents,
who are now dead and thought that nuclear testing was the best thing the
country could do to protect itself? The people who tested the bombs, or the
scientists who developed them? The effects of nuclear radiation were poorly
understood until some time after World War II, when high rates of birth defects
and cancers—including leukemia—showed up among survivors of Hiroshima and
Nagasaki in Japan."
"But that didn’t stop them
from testing more nuclear weapons, and building nuclear power plants, and doing
things that can kill a lot of people and even destroy the world. And it’s still
being done, isn’t it, Dad?"
James was silent for a moment
before he answered his son. "Yes, Jack, I’m afraid it is still being
done—maybe not in this country, but in others. And there are enough weapons to
destroy the world several times over, and yes, nuclear power is still being
used, even in places where it’s utter idiocy to build such dangerous plants,
like the California coast."
"I wish there was something
I could do to stop it—it wouldn’t cure me, but it might help other people not
to have to go through this."
"I don’t think any one
person can stop it. But there are organizations you can join that are fighting
against nuclear power and weapons, and there are other things you can do to
help the environment, the destruction of which also causes cancer in many
people."
"Like what?"
"Like the Sierra Club, for
example. Your mother and I have been members for years. And there are others,
too—you might want to look into them if you’re serious about wanting to work
against nuclear power and weapons."
"I’m serious, Dad. About
that and all the other stuff. I’m sure as hell serious."
*****
Lorraine was waiting for them
when they got off the plane and went to claim Jack’s baggage. She took one look
at her son’s pale, tired face and the bruises on his arms and legs and rushed
to him, hugging him so tightly that Jack was sure he would have a few more
bruises.
"Mom!" he gasped as she
squeezed him a little too tight. "Not in public!"
"None of your friends are
here, Jack. You don’t have to be embarrassed about hugging your mom."
Jack groaned. He loved his
parents very much, but sometimes they really embarrassed him.
Lorraine finally let go of him,
taking his carry-on backpack from him and swinging it onto her own back.
"I couldn’t believe it when the camp called to say that you’d been
diagnosed with leukemia again and were being sent home."
"Me, neither," Jack
mumbled, ducking his head as they walked towards the car. "I thought I was
done with the Goddamned—"
"Jack! Your language!"
Jack turned red. "Sorry,
Mom," he mumbled, remembering that he could get away with cursing in front
of his dad and his friends, but not in front of his mother. "Uh…anyway…I
hoped I was done with it after three years…except for the tests to make sure it
was still gone and everything."
His mother gave him another hug
as they reached the car. Jack didn’t protest this time. "I know, sweetie.
We’d hoped you were cured, too. But now…we’d better get you back into
treatment. Hopefully, this time you’ll be cured."
"It’s harder to get into
remission the second time," Jack told her, getting into the back seat of
the car and buckling himself in. His eyes drooped sleepily—he hadn’t slept for
more than a half hour on the plane, and he was starting to feel feverish again.
"We’ll make sure that you
get the best treatment possible," James said, giving Jack a glance before
starting the car. "We’ve already talked to your oncologist, and he’s
arranged for you to be admitted to the hospital at Loma Linda University this
afternoon. You can rest at home for a few hours, and then we’ll take you over
there."
"Uh-huh," Jack mumbled,
not sure what his dad had said, and too sleepy at the moment to really care.
*****
The next day, James and Lorraine
came to the hospital to visit their son and discuss treatment options with his
doctor. Jack was feeling a little better now, and was sitting up in bed,
drawing in his sketchpad, when his parents arrived.
"How are you feeling,
Jack?" Lorraine pulled up a chair next to his bed.
Jack shrugged. "Okay, I
guess. They’re giving me medicine, but they haven’t given me any IV
chemotherapy yet, so I’m not feeling too sick."
"The head pediatric
oncologist here should be here soon to discuss treatment options," James
told him. "Your mother and I discussed it, and since you’re fifteen and
this is the second time you’ve been through this, we want you to have some say
in your treatment."
Jack set his sketchpad down.
"Really?" He’d just assumed that the doctor would decide what kind of
treatment he would get.
"Really." Lorraine
looked up as Dr. Patterson, the head of pediatric oncology, came into the room.
"Dr. Patterson? I’m Lorraine Dawson, and this is my husband, James. And
this is our son, Jack."
"We’ve met," Dr.
Patterson said dryly. "He was in my office this morning, wanting a second
opinion. When I gave the opinion that his test results were correct and he does
indeed have acute lymphocytic leukemia, he asked where he could get a third
opinion."
"Jack!" Lorraine
frowned at him.
He avoided her eyes. "Well,
what if the test results are wrong?"
"They’re not wrong,
Jack." James shook his head. "I know you wish otherwise, but four
doctors have looked at them and said the same thing. You need to think about
getting appropriate treatment instead of grasping at straws in hopes that you
haven’t relapsed."
Jack mumbled something under his
breath.
"And don’t swear,"
Lorraine added. "I know enough Spanish to know what you just said."
Jack didn’t answer, but only sat
up straighter, looking unhappy. After crossing his arms and eyeing each adult
in turn, he asked, "What are you going to do to me this time?"
Lorraine sighed. She knew Jack
hated leukemia, cancer treatment, and being fussed over, but his attitude this
time was far worse than the last time, and she was tired of it. Before Jack
could say anything else, she stood, leaning over his bed and looking him right
in the eye.
"Jack, I am only going to
say this once, so you’d better listen. I know you hate being sick, but being
rude to people isn’t going to make things better. I am sick and tired of your
attitude, and I want you to shape up right now. Your father and I decided that
you’re old enough to have some input on your treatment, but I’m beginning to
think we were wrong, because you’re certainly not displaying much maturity now.
I want no more arguing, no more swearing, and if you want to have any say at
all in your treatment, you’d better shape up, lose the attitude, and start
treating people with respect. Do you understand?"
Jack stared at her in shock. He
hadn’t expected her to get this angry at him. He glanced at his dad, but
immediately knew he would get no help from him.
"Do you understand,
Jack?" Lorraine repeated.
"Uh…um…yes." His voice
cracked a little.
"Yes, what?"
"Yes, I’ll stop arguing and
start being nicer to people." He looked down. "Sorry, Mom."
Lorraine sat back down.
"Thank you, Jack. I don’t like to yell at you, but sometimes, it seems
like you don’t understand anything else."
"Ahem." Dr. Patterson
cleared his throat, looking at Jack, who was staring at his hands, trying to
avoid looking anywhere else. "I do have other patients to see this
afternoon, so if we could get this discussion started…"
"Of course." Lorraine
patted Jack’s hand, letting him know she wasn’t too angry with him. "Jack,
you’ve been through treatment before, so if you have anything to add to this
discussion, go ahead."
Jack looked up briefly and nodded
slightly, but didn’t say anything.
Dr. Patterson opened Jack’s
chart. "Jack, judging from your past experience with leukemia, the best
treatments are an aggressive regimen of chemotherapy, and radiation treatment,
if needed, or a bone marrow transplant. However, since no one has been tested
as a potential bone marrow donor for you, and your type of leukemia tends to be
aggressive, I would recommend that you continue with the medications you
started last night, along with IV chemotherapy and other treatments as
indicated."
Jack looked up at him. "How
long does it take to find a bone marrow donor?"
"It depends upon whether you
have a relative who is a match and is willing and able to donate bone marrow to
you. If not, we’ll have to look for unrelated donors, and finding one could
take months or years, if one exists at all. You have about a one in twenty
chance of finding an unrelated matching donor."
"About five percent."
Jack nodded. "How do you find out if someone matches?"
"Through tissue typing. The
donor needs to be a perfect ‘six-of-six’ match with you, meaning that all six
of the donor’s antigens match yours. Your body will reject anything else."
"What are my chances of
survival with just the chemo?"
"Statistically, about thirty
to forty percent."
"And with a bone marrow
transplant?"
"About fifty percent, but
bone marrow transplants can be very dangerous. All of your own bone marrow must
be destroyed, leaving you at high risk for infection, and then there’s always
the chance of rejection of the marrow received. And even then, there’s still a
possibility of relapse."
"Jack," James
suggested, "why don’t you start with the chemotherapy Dr. Patterson
recommended and wait to make any decisions about a bone marrow transplant until
we know whether or not a compatible donor can be found?"
Jack thought for a moment, then
looked at Lorraine. "What do you think, Mom?" He wanted some say in his
treatment, but making decisions like this were harder than he’d thought.
"I think you should have
chemotherapy and see how you do, and we’ll talk to your relatives and see if
they want to be tested as donors. I think they probably will—they like you, and
they were disappointed to hear we wouldn’t be visiting this summer. Your dad
and I will be tested, too, even though we aren’t related to you by blood, just
in case one of us is a match."
Jack looked back at Dr.
Patterson. "Can I do that? Can I start with chemotherapy and then get a
bone marrow transplant later if there’s a match?"
"Depending upon your
response to the initial treatment and your health, if a match is found, yes, it
is possible."
Jack looked at each of his
parents, sensing that they would support any decision he made.
"That’s what I’ll do, then.
I’ll see how I do on the chemotherapy, and if a bone marrow donor can be found,
I’ll decide about a transplant then."
August 25, 2001
"Jack? Jack, wake up."
Jack opened his eyes slowly at
the voice and the feeling of someone else’s hand on his. He sat up slowly,
struggling against a wave of nausea.
"Uh…hi, Mom." He lay
back down. "I don’t feel so good."
"Do you need a basin?"
"Maybe. They’ve had me on
this IV for two days now. When did you get here?"
"We got back from Wisconsin
this morning and got here just a few minutes ago."
Jack struggled to keep his eyes
open. He’d had IV chemotherapy that morning and wasn’t feeling well at all.
"What did you find out? Is
anybody a match?"
Lorraine sat down beside him,
squeezing his hand gently. "I’m afraid not, sweetie. The closest was your
Aunt April, and she was only a five-to-six match. Your dad and I weren’t even
half-matches, I’m afraid."
"Not surprised. You’re not
related to me. Anybody in the National Registry?"
"Not so far."
"Ah…hell." Jack opened
his eyes and looked at his mother sheepishly. "Sorry, Mom."
"Don’t worry about it, Jack.
I said something stronger than that when I found out there wasn’t any
match."
"Huh. That’s almost
funny." He tried to smile, but couldn’t quite manage it. "I guess I
won’t be going to high school after all."
"Oh, Jack, of course you
will. The district has a tutor they actually send out to sick students, so I’m
getting your books tomorrow and the tutor will visit you once a week until you
can attend classes at the high school."
"And, Jack," James
added, "I’m teaching Freshman English this year, so I’ll be teaching the
same things you’re supposed to be learning in English class in school. So I’ll
be coming in and teaching you after school when you feel up to it."
"Okay. Thanks, Dad."
"And when you get better,
you’ll be able to go to regular school like anybody else."
"If I get better. The odds
aren’t that good, you know."
"Dr. Patterson says your
tests are starting to look better. You’re not in remission yet, but they are
looking better."
"I guess."
"Come on, Jack. I know you
don’t feel well right now, but try to think positively. You know it’s been
shown to help."
"I’d feel more positive if I
didn’t feel so sick."
"Well, maybe you’ll feel
better in a few hours, then."
"Maybe. I just wanna sleep
now." He closed his eyes, then opened them and looked at his parents for a
moment. "Can you stay until I fall asleep?"
"Sure, Jack. Of course we
can." Lorraine ran a hand over his head gently, noting that although his
hair had thinned a little, he wasn’t going bald like he had the last time.
"Rest, Jack. We’ll stay here for a little while, and then we’ll be back
tomorrow to visit again."
October 2001
"I’m not hungry." Jack
pushed his dinner tray away, earning a look of annoyance from the nurse who had
just given it to him.
"You need to eat. And most
kids on the medical regimen you have this week can’t seem to eat enough. As I
recall, the last time you were taking these meds, you would have been happy to
eat three or four of these dinners—you kept pestering me for more food."
"I’m not hungry now. My
stomach hurts," Jack complained, holding a spot just under his left ribs.
"That’s not your
stomach."
"Well, something hurts. My
back hurts, too, and so does my shoulder." He looked up, suddenly alarmed.
"You don’t think I’m having a heart attack, do you?"
"I doubt it very much, but
I’ll call the doctor for you just in case."
An intern working in pediatric
oncology arrived a couple of minutes later. Jack looked up at her, a panicked
expression on his face. "I think I’m having a heart attack!"
The intern listened to his
heartbeat for a moment. "No, you’re not having a heart attack. Your heart
rate is well within the range of normal, if a little fast right now, probably
because you’ve been scaring yourself."
"Then what’s wrong with
me?"
"Let’s examine you and find
out."
When she pressed gently on the
spot under Jack’s ribs that he had indicated was painful, he winced and tried
to pull away.
"Hold still."
"That’s what hurts!"
"I know, but please try to
hold still. I think I may have found the problem."
"What is it? Do I have a
tumor or something?" Jack asked, knowing that the treatment for leukemia
could sometimes cause secondary cancers.
"I don’t know about a tumor,
but your spleen is definitely enlarged. That’s not at all uncommon in
leukemia." She got him to sit up, examining the place where he had said
his back was hurting. "How long have you been in pain?"
"Uh…a couple of days, I
guess, maybe three…but it wasn’t really bad, just kind of annoying. It felt
weird before that…like that area was full of something…and I wasn’t real hungry
then, either, but I was taking medicine that made me nauseous, so I didn’t
think anything of it."
"How long has your shoulder
been hurting?"
"Just a few hours, really.
It didn’t start hurting until after my stomach—or whatever—and my back were
already hurting."
She nodded. "I wish you’d
said something sooner. Your enlarged spleen may be why you’ve been anemic in your
recent blood tests, even after several blood transfusions."
"I didn’t know. It didn’t
hurt that much, so I just ignored it. I mean, I have cancer, so things hurt all
the time, and I’ve just kind of learned to live with it if it’s not too
bad."
"Well, I’m sending you to
get an x-ray, because your spleen is definitely enlarged, and the fact that you
have pain in your shoulder may indicate that parts of your spleen haven’t been
getting enough blood and are starting to die."
A few minutes later, Jack was in
a wheelchair and was being taken to radiology. It was starting to hurt more, so
he didn’t make a fuss about the cold metal x-ray table or about the nurse
helping him to move into the right positions for the x-rays.
*****
A couple of hours later, the intern
examined the x-rays and shook her head, turning to Jack, who was sitting in his
wheelchair looking at the pictures and not quite understanding what they meant.
"Your spleen is very
enlarged," she told him, "and parts of it are definitely
necrotic."
"Definitely what?"
"Dead or dying, causing the
pain in your shoulder and causing complications if it isn’t treated soon."
"Do you think it’s because
of my leukemia?"
"Probably. Leukemia cells
can build up in the spleen. You’ve also had severe anemia lately."
"So what are you going to
do? Give me radiation therapy to get rid of the cancer cells?"
"Not in this case. As severe
as your anemia has been, and with parts of your spleen dead or dying, it needs
to be removed."
"You mean like
surgery?"
"Yes…it’s called a
splenectomy."
Jack frowned, thinking. "How
dangerous is it?"
"All surgeries carry some
risk, but in this case I think it would be riskier not to have it."
"When is it going to be
done?"
"Tomorrow. Your spleen isn’t
in danger of rupturing, so it doesn’t need to be done immediately, but it does
need to be done soon, before infection can set in."
"Do my parents know?"
"They’ve already been
called. They said they’d be here before your surgery tomorrow afternoon—it’s
scheduled for two o’clock—and they’ll be here when you wake up."
"Are you going to do the
surgery?"
She shook her head. "No.
I’ll be observing, but Dr. Campbell, who has a lot of experience in this type
of thing, is going to be your surgeon. You’re in good hands, Jack." She
began to take down the x-rays. "You can go back to your room now. The
nurse will give you something for the pain and to help you sleep, and remember
not to eat or drink anything after two o’clock in the morning."
"I’m not hungry
anyway."
"Even so…if someone forgets
and gives you food, or one of the other kids wants to share with you, don’t eat
it, and don’t drink anything after two, not even water."
"Why?"
"Because a full stomach can
complications during surgery, especially if you vomit."
"Oh. Gross."
She closed his chart and handed
it to the nurse who had come to take him back to his room. "Chances are
you’ll be fine, Jack. Dr. Campbell has done this procedure many times before,
so he knows what he’s doing. Try not to worry."
"Easy for you to say,"
he mumbled. He’d never needed major surgery before, and while he knew plenty of
people who went through surgery and were fine, he’d also known a few for whom
things had gone wrong—sometimes horribly wrong.
*****
Jack’s parents arrived at the
hospital at 12:30 the following day. Jack was sitting cross-legged on his bed,
sketching the boy in the next bed, whose arm had been amputated at the shoulder
and who had been trying, without great success, to convince Jack that surgery
wasn’t going to kill him.
Jack hadn’t been convinced, even
when the boy had pointed out that he’d probably feel better after his
splenectomy—after it healed, anyway—and that it wasn’t as bad as what he’d gone
through, because Jack wouldn’t be missing a limb or even have a really obvious
scar—his clothes would cover it most of the time.
James and Lorraine came into the
room just as Jack was finishing sketching the boy’s empty shoulder. They stood
at the end of his bed for a moment, waiting for him to notice them.
Jack finally looked in their
direction. "Oh, hi." He looked back at his drawing, trying not to
show how worried he was.
Neither of his parents were
fooled. "How are you doing, Jack?" James asked, pulling up a chair
next to his son’s bed.
Jack shrugged. "Okay."
"Looking forward to feeling
a little better?"
"I guess."
"Worried about the
operation?"
Jack just shrugged, but the boy
he was sketching answered the question for him. "Yes."
"Not really." Jack
glared at him.
"Yeah, really." The boy
looked at Jack’s parents. "He was reading about it in a book this morning,
and then we were talking about it, and he doesn’t believe it’ll actually help
him."
"Shut up." Jack closed
his sketchpad. "Or I won’t finish this."
"Whatever."
"Jack, do you want to talk
about it?" Lorraine asked, smoothing his thin hair back from his face. He
ducked, trying to avoid her hand.
"I’m okay."
"Actually, judging from your
behavior, I’d say you’re pretty worried."
Jack looked up at her. "Why
do you say that?"
"Because we’ve known you for
over fifteen years, and when something big is coming up and it worries you,
especially when you don’t want to admit it, you act really nonchalant."
"I’m okay. Really."
"Why don’t we go to the
visitor area and talk about it?"
"But…"
"Jack…"
Jack frowned, putting on a show
of being annoyed. In truth, he was glad that they were there, but he didn’t
want to show it too much in front of the other kids.
"Okay. I’m coming."
When they got to the visitor
area, Jack sat down in a chair in front of his parents, nervously scrunching
his now too big t-shirt in one hand.
"I guessed you’d be kind of
worried," James said. "You’ve never had surgery before. We were
worried when the hospital called and told us what was going on, even though we
knew it could happen and we’d already given permission for you to have surgery
if the need arose."
"I’ve had surgery
before," Jack told him. "Or, at least, I’ve had needles stuck into my
bones and between my vertebrae."
"That’s not really major
surgery, though," Lorraine responded. "I don’t know if it really
qualifies as surgery at all, unpleasant though those things are."
"What were you
reading?" James wanted to know.
"They have some books that
we can read if we want more information about our conditions, or procedures we
have to have, or the drugs, or things like that. I found one called the Merck
Manual and was reading about splenectomies and stuff like that."
"And what did you find
out?"
"Well, sometimes it is
necessary, and I guess if part of an organ is dead, it’s really necessary, but it
can cause a person to bleed a lot, and I already bleed a lot at little things,
‘cause of the leukemia and ‘cause I’m anemic, which the doctor said is partly
caused by my spleen being too big. And it could get infected after the surgery,
and that could be really bad." He paused. "You know, most kids my age
probably don’t even know what a spleen is, and here I know what it is, what it
does, what kind of diseases can make things go wrong with it, and what can
happen when it’s taken out."
"Well, you’ve had experiences
that most kids your age can’t begin to imagine."
"Yeah. I know." Jack
stopped, thinking. "Dad, what if I die?"
"Jack! What a thing to
ask!" Lorraine scolded, appalled.
James shook his head. "It’s
a reasonable question, with what he’s going through."
"I don’t think—"
"Mom, I’m serious,"
Jack told her. "I mean, it could happen."
"You’re not going to die,
Jack." Lorraine gave him a look that was half-exasperated, half-alarmed.
"You have a very experienced surgeon."
"Mom, what if I bleed to
death or something? Or get an infection afterwards? Or what if I can’t get back
into remission? It’s been three months since I was diagnosed with leukemia
again."
"It took you seven months to
get into remission the first time. I wouldn’t worry yet."
"But you are worried, Mom.
What happens if I die? Are you going to donate my organs or something?"
"Jack, you can’t be an organ
donor." James leaned forward, looking at him. "You have cancer. The
only thing your organs could be used for is science."
"So, if I die, you’ll just
bury me?" He noticed that his mother was staring at him, hands pressed
over her mouth and tears in her eyes. "What’s wrong, Mom?"
"I can’t believe I’m hearing
this." Lorraine’s tears spilled over. "You’re fifteen, Jack! You’re
not going to die!" She pulled a tissue from her purse and wiped her eyes.
"Excuse me."
When Lorraine had headed in the
direction of the ladies’ room, James got up and sat next to his son. "Your
mother’s pretty upset about this, Jack. She doesn’t want to consider the
possibility that you might not make it."
"I might not, though. I
mean—"
"I know, and so does she.
But she doesn’t want to discuss it. Most parents don’t want to consider the
idea of losing a child."
"But, Dad, I’m serious. What
happens if I die? I mean, do you think there’s…you know…something after
this?"
"You mean like heaven?"
"Or hell, or anything like
that. I’ve been through cancer treatment…I’m sure hell can’t be any
worse."
"What do you think, Jack?
Your mom’s been taking you to church since you were a baby."
"I don’t know, Dad. I’ve
known quite a few people who’ve died…more than most kids my age…and I just
don’t know. You hardly ever go to church, so I want to know what you
think."
James sat back, thinking about
it. The thought had gone through his mind more than once since Jack had first
been diagnosed with leukemia, but he still didn’t really have an answer.
"I think there probably is,
Jack. Heaven, reincarnation…I don’t know what, but I think there probably
is."
Jack thought about this for a
moment. "What do you think Mom would say?"
"I think she’d tell you not
to worry about it, that you’re only fifteen and you’re not going to die anytime
soon. Yes, I know you’ve known kids your age and younger who’ve died, and so
have a I—a few, anyway, over the years that I’ve been teaching—and your mother
has known some kids who died, too. But she doesn’t want to think about it
happening to you, and she’s probably right when she says you’ll be fine when
you have your splenectomy. That procedure’s been done many, many times, and
most patients—including leukemia patients—survive it." He put a hand on
Jack’s shoulder. "You’ll be fine."
*****
Jack wasn’t fine.
The surgery itself went well,
though he needed several units of blood due to his anemia and the difficulty in
getting his blood to clot, but one and a half days after the surgery, his
temperature spiked to a dangerously high level, and red streaks indicating
infection spread out from the surgery site. He was taken to intensive care and
given antibiotics to counter the infection, but the next day Dr. Campbell had
to operate again to clean out the infected tissue.
James and Lorraine stayed with
Jack as long as they could each day, watching him from the window outside his room
when they couldn’t be with him. They skipped work—grateful for the fact that
they were able to keep unused sick leave from year to year, since they were
using it now to be with their gravely ill son—and going home only to sleep and
change clothes.
Jack himself was aware of little
of this. He thrashed about in a feverish daze at times, fighting against the
oxygen tube in his throat, until he had to be restrained to prevent him from
tearing open his stitches. His fever would drop, only to spike again, and the
high doses of antibiotics he received through the IV seemed to have no affect
on the raging infection. In spite of all appropriate precautions being taken,
he had fallen prey to one of the antibiotic-resistant infections that grew more
common each year.
He was aware only of being
terribly hot, and then so cold that the world seemed to be made of ice. Strange
images flashed through his delirious mind—a room filled with smoke and flames,
screams, explosions ending in mushroom-shaped clouds, voices talking so fast
that he couldn’t make out what they said or so slowly that he thought he would
go crazy waiting for the next word. More than once, he felt as though he were
drowning, and once, as he fought deliriously against the doctor who was
draining the fluid from his lungs, he thought he saw curly red hair surrounding
a face that he couldn’t quite make out, but which calmed him just the same.
At times, he thought he felt
hands holding his, and once he heard someone crying and pleading with him to
get well—someone who sounded like his dad, but he slipped away into delirium
again before he could be sure.
In spite of all this, Jack clung
to life tenaciously, and three days after his second surgery, his body began to
win the battle against the infection. His fever spiked one last time, then
dropped, his temperature returning to normal late that evening. His parents
were still there, in spite of visiting hours being over, and when a nurse went
to inform them that he was awake, they rushed to his side.
Jack looked up weakly as they
came in—he had won the battle with the infection, but it had left him drained.
He tried to speak, but the tube had left his throat too sore, so he smiled
weakly as they hurried to his bedside.
"Jack! Thank God! I was so
scared." Lorraine took his hands in hers and squeezed them gently, careful
not to jar the healing surgery wounds on his abdomen. "We thought we were
going to lose you."
"Mom." Jack mouthed the
word silently as tears of relief ran down Lorraine’s face. He suddenly felt
like crying himself, so he turned his gaze to his father.
James was gazing at him with a
mixture of relief and astonishment. Jack had been so sick, the infection raging
throughout his whole body, that he had feared that his son would not survive.
He had watched as the doctors had drained the fluid from Jack’s
pneumonia-stricken lungs, the boy fighting them the whole time, and wondered if
anyone could survive such an illness, an illness that the strongest drugs
seemed useless against. But Jack was alive—because something had finally
worked, because of Jack’s own will to live—he didn’t know. His son was alive,
and that was all that mattered.
Jack tried to speak again, but it
hurt too much. Everything hurt—his throat, his chest, his wrists and ankles
where he had fought against the restraints, the healing cuts from the
surgeries—and suddenly his eyes overflowed. He pulled a hand away from his
mother and wiped his eyes, embarrassed.
"Don’t cry, Jack,"
Lorraine whispered, leaning in and kissing him gently on the forehead.
"You beat this thing, and you’re going to be okay."
Jack nodded, his eyes moving from
one parent to the other. "I love you, Mom. I love you, Dad," he
mouthed, wishing he could say the words out loud, but his parents seemed to
understand.
"We love you, too,
Jack," James told him, tousling his thin hair gently.
Jack smiled a little, exhaustion
creeping over him. As his eyes drooped shut, his mother leaned over him,
whispering, "Rest now, Jack. We’ll stay until you’re sleeping, and then
we’ll be back in the morning to see you."
Jack nodded slightly, already
nearly asleep. His parents sat beside him until his breathing grew deep and
even, and then Lorraine gently pulled the covers up to his chin and kissed him
good night.
December, 2001
With the infection that had
ravaged his body finally healed, Jack’s recovery was rapid, and soon he was
undergoing cancer treatment again. His illness had set him back several weeks,
but when he was able to endure the chemotherapy and radiation again, his
progress was more rapid than before. His spleen had been trapping large numbers
of leukemia cells—enough that the cells had begun to form tumors—but with it
removed, the treatment was more effective.
Jack had a thick, ropy-looking
scar on his abdomen that would always be there—though it would fade a little
with time—but aside from that, and a greater vulnerability to infection that
mandated that antibiotics be added to his medical regimen, he had no lasting
effects from his surgery or his illness.
The scar bothered him at first.
He would trace it with his fingers, wondering how what should have been a
reasonably simple operation had left such a massive scar, but the infection and
the need for a second surgery had made the scarring worse. It didn’t really
show—unless he went swimming or was going around without a shirt, his clothing
would cover it—but it bothered him just the same.
Some of the kids on the pediatric
oncology floor had far worse scarring than him. Several were missing limbs, and
one boy was missing an eye, part of one cheek, and his lower jaw due to a tumor
that had started in his jaw and metastasized. And even with such drastic
surgery, Jack knew that the boy was not expected to live to see the new year.
One day in the middle of
December, Jack sat in the activity room with his sketchpad, surreptiously
sketching a picture of a one-legged girl sitting sullenly in a corner. The girl
had been angry and withdrawn since her surgery, and no one seemed to be able to
bring her out of her bleak mood.
Now, though, she caught sight of
Jack drawing and, trying not to let her interest show, she looked at the
sketchpad. When she saw what he was sketching, however, her face darkened
angrily.
"Stop it!" she hissed
at him.
Jack looked up, startled.
"Stop what?"
"Stop drawing me!"
"Sorry," Jack mumbled,
none-too-politely.
"Why were you drawing a
picture of me? Did you want something to laugh at?"
"No. Why would I laugh at
you? I don’t even know you!"
"Then why were you drawing
me?"
Jack blushed slightly. "Well…uh…actually…um…well…it’s
because you’re pretty."
"What?" She stared at
him like he’d grown two heads. "I’m not pretty!"
"Well, actually…uh…yes, you
are."
"Liar!"
"Beauty is in the eye of the
beholder," Jack snipped at her.
"Oh, so you think this is beautiful?"
She struggled to her remaining foot, grabbing the empty leg of her pajama
bottoms and showing him were the stump of her leg ended.
Jack shrugged. "It’s not
that bad."
She rolled her eyes. "That’s
easy for someone with no scars to say."
"I have a scar."
"Oh, yeah? Where? I don’t
see it."
"You wanna see it?"
"Sure. Prove it!"
Jack yanked up his t-shirt,
showing the scar from his splenectomy. "Are you happy now?"
She rolled her eyes again.
"Whatever. Nobody can even see that."
"They will if I go swimming!"
"Jack Dawson, put your shirt
back down!" The nurse in charge of the activity room had caught sight of
the arguing pair.
"I was just showing her my
scar."
"She doesn’t need to see
your scar. Susanna," she said, turning to the girl, "sit down before
you fall down."
Susanna gave the nurse a nasty
look. "He thinks he’s got it so bad," she said sarcastically.
"He’s got a scar that no one can even see. Just wait ‘til he loses a
leg!"
Jack rolled his eyes in imitation
of her. "That’s for bone cancer, not leukemia," he informed her.
"Whatever, Jackass."
"My name is Jack, not
Jackass."
"That’s enough, both of you!
Susanna, apologize to Jack. Jack, leave Susanna alone."
Susanna scowled at him.
"Sorry." She crossed her fingers to show she didn’t mean it.
"Whatever."
"Jack!" The nurse
turned to him angrily.
"I’m going, I’m going."
He got up, taking the half-finished drawing with him. After a few steps, he
turned around. "And you are pretty," he mumbled.
Susanna gave him the finger. Jack
returned the gesture.
The nurse’s eyes widened.
"That’s it! Both of you are to go back to your rooms right now! I don’t
want to see either of back here before tomorrow."
Susanna looked at Jack angrily.
"Fine."
Jack just turned and stomped off
without a word.
*****
Jack was surprised when, later
that same day, Susanna wheeled herself into his room and sat glaring at him.
"What do you want?"
After the way she’d treated him earlier, he wasn’t particularly pleased to see
her.
"I wanted to apologize for
being such a bitch."
"You sure don’t look
sorry."
"I don’t like being made fun
of."
"I wasn’t making fun of
you."
"So you really think I’m
pretty?"
"I said so, didn’t I?"
"You think a missing leg and
a bald head are pretty?" She pulled off her wig.
Jack glanced at her bald head.
"It’ll grow back. I went bald the first time, too."
"You’ve been through this
before?"
"Yeah, several years
ago."
"When did you get your
scar?"
"October. I had a
splenectomy, and then a bad infection."
"What did your girlfriend
think?"
"I don’t have a
girlfriend."
"Lucky you. I used to have a
boyfriend."
"What happened?"
"He got scared when I told
him I had cancer, and then he saw me after I had my leg amputated and told me
that it wasn’t going to work out. Later, my best friend told me that he was telling
everybody how ugly I was and how weird I looked without my leg."
"That was rude." Jack
looked at her cautiously, still not sure why she was there.
"Tell me about it." She
put her wig back on. "Anyway, Jack…I wanted to apologize for taking things
out on you and getting you kicked out of the activity room. I’ve been mad at
everybody lately, but I shouldn’t have taken it out on you, even though I
thought you were making fun of me."
"I wasn’t."
"I know." She looked at
him for a minute. "Uh…do you still have the sketch you were making?"
"Yeah." He’d been too
busy sulking to bother with throwing it away.
"Um…you can finish it…if you
want to, I mean…I won’t mind."
"Thanks," Jack
responded dryly.
"Um…if you do finish it, can
I have a copy? It looks kind of nice…" She trailed off, looking at him
uncertainly.
"Uh…sure."
"So…you’re going to finish
it, then?"
"I guess."
"I can sit in the same spot
tomorrow if you want."
"I’ve got IV chemo
tomorrow."
She made a face. "Poor
you."
"I hate IV
chemotherapy."
"It’s awful, isn’t it? I
only have to have it once every couple of weeks, but it sucks."
"More like pukes."
"That, too."
Jack looked at her. "Well,
maybe the next day, if I feel up to it, I can finish it."
"Really?"
"Sure."
"Um…thanks." She
started to wheel herself away, then stopped. "You know how you showed me
your scar?"
"Yeah?"
"Well…it doesn’t really look
that bad…I mean, you’re a guy, so you don’t have to look all perfect and
everything…and you can cover it with a shirt…or if it really embarrasses you,
you could put makeup over it so it doesn’t show as much."
"Makeup?"
"You know, the stuff girls
put on their faces."
"I know what makeup is. I
just don’t wear it."
"Well, there’s kinds of
foundation or concealer you can get that are waterproof and can be matched to
your skin tone…the scar would show less with it…"
"Oh. Well…I guess I can
think about it…the scar might fade a little by the time I get out of
here."
"Maybe." Susanna turned
her wheelchair around. "Um…I guess I’ll see you in a couple of days."
"Yeah…I’ll finish that
sketch for you then."
*****
Two days later, Jack kept his
promise to Susanna and finished the sketch. She sat beside him when it was
done, still not quite believing that anyone could think her pretty.
And the girl in the picture was
pretty. She’d been wearing her wig, so her baldness didn’t show, and the sketch
was of her from the waist up, not showing her missing leg at all.
Jack went to find a photocopier
for the drawing, then surprised her when he returned and handed her the
original.
She looked up at him. "Are
you sure you want to give me this, and not the copy?"
"The picture’s of you."
"Yeah, but…"
"The copy’s fine for
me."
"Um…okay. Thanks."
They sat quietly for a few minutes,
Susanna looking at the drawings in Jack’s sketchpad. When she came to the
drawings he’d done of some of the other kids in the hospital, she slowed,
looking at them thoughtfully.
"Jack?"
"Hmm?"
"Have you ever thought about
drawing someone showing…um…all of them, with all their scars
and…everything?"
He looked at the picture she was
looking at. It was the one he’d drawn of the boy who had been in the bed next
to him, the one whose arm had been amputated at the shoulder.
"Well, I’ve drawn pictures
of kids who were missing limbs and showed where the limb was missing,
yes." He pointed to the boy. "He recovered and went home, by the
way."
"Good. But…um…that’s not
quite what I meant."
"What did you mean?"
Jack thought about it a moment. "You don’t mean…uh…you know…"
"Naked?"
"Um…yeah."
"That’s what I meant."
Jack turned red. "I…um…I’m
not really into drawing naked guys…"
Susanna rolled her eyes at him.
"Not guys, stupid. Girls."
"Girls?"
"Yes, girls."
"Um…no…I’ve never drawn a
naked girl." He’d thought about it, but had never tried it, partly because
the idea embarrassed him and partly because he liked his drawings to look
realistic and not like the pornographic pictures some guys drew in their books
when they were bored.
"Have you ever seen a naked
girl?"
"Well…um…not really."
It wasn’t strictly true—he’d walked in on his mother getting out of the shower
when he was three, but all he remembered was that she’d grabbed a towel to
cover herself and escorted him out of the bathroom, shouting for his father to
keep an eye on him, so he didn’t think that counted.
"Really?"
"Really." Jack looked
at her strangely. "Why?"
"Well…um…I was wondering if
you could…uh…you know…draw me." She blushed.
Jack turned an even brighter
shade of red. "Um…why do you want me to draw you…uh…"
"Um…ah…I don’t know…it
seemed like a good idea when I thought of it."
"But why?"
"Well…I don’t know…kind of
to prove I’m not that ugly."
"You’re not ugly."
"So you say, but…"
"Besides, where would I be able
to sketch you without…uh…any clothes on? We’d both get in trouble."
"Um…nobody uses the physical
therapy room on Sundays."
"Is it locked?"
"Yes, but you can get in
through the bathroom."
"I don’t know…"
"Just this once? I mean,
you’ll never know if you’re any good at it unless you try."
Jack thought about it. He was
uncomfortable with the idea, but intrigued at the same time. He wasn’t
interested in Susanna as a girlfriend, so maybe it wouldn’t be too awkward.
He looked at her, making up his
mind. "I guess I can try drawing you…uh…without clothes. But if we get
caught, it was your idea."
*****
On Sunday, Jack and Susanna
sneaked off to the physical therapy room, Susanna trying her crutches outside
of physical therapy for the first time. The room was at half-lights, but with
sunshine coming in the windows high on the walls, there was plenty of light for
Jack to draw by.
Jack was still feeling awkward
about drawing someone naked, and Susanna was beginning to feel nervous about
the whole idea, too, but neither would admit it. While Jack found a place to
sit and sharpened his pencil, Susanna undressed in the bathroom and came out
wearing her tattered robe.
Jack stared at her for a moment,
clutching his pencil so hard it almost broke. Susanna leaned on her crutches
nervously, overbalancing and almost falling over.
"Um…where should I
pose?" she asked, looking around. There were several pieces of equipment,
some chairs, and a barre running half the length of one wall. She knew there
were others rooms off of this one, but they were securely locked.
"I…should I sit, or should I pose holding onto my crutches, or…I need
something to hold me up if I’m not sitting." She blushed, hoping that he
wouldn’t ask her to lay down or something. Nothing was going to happen, she was
sure, but the idea of laying down stark naked in front of a guy was something
she didn’t want to think about.
Jack looked around, his eyes
focusing on the barre. "How about over there?" He pointed.
Susanna nodded, moving in the
direction of the barre. "Should I keep balancing on my crutches, or should
I hold onto the barre? I’ve held onto it at physical therapy," she added,
"and I haven’t fallen yet."
"Uh…yeah. Hold onto the
bed…uh…I mean…the barre," Jack told her as she awkwardly dropped her robe
to the floor and leaned her crutches against the wall. He turned bright red at
his slip of the tongue.
Susanna turned red, too, giving
him a nervous look. Then she started giggling, almost losing her grip on the
barre.
"If my friends could see me
now," she said, more giggles escaping, "they would just die. I bet
some of them would be jealous. My shithead ex-boyfriend would be…he’s never
gonna see this!"
She gestured to her skinny body
and the stump of her leg. Jack, picturing the expression on the face of Susanna’s
ex-boyfriend, starting laughing, too, breaking the tension.
Susanna finally stopped giggling.
"Okay…um…does this look okay?" She held onto the barre with both
hands, facing him.
Jack stared at her for a moment.
"Um…yeah…that looks fine." He opened the sketchpad to a fresh sheet
of paper and began sketching her.
No one interrupted them, though
Susanna had to take breaks twice to rest her tired leg. She sat beside Jack
both times, looking at his progress on the drawing and wondering shyly if she
really looked as good as the picture seemed to show, or if he was just using
his imagination. She didn’t quite have the courage to ask.
When Jack finally finished the
drawing, she sat beside him as he signed his initials to it.
"Add the date and my name,
too, so you don’t forget who the picture’s of."
"I thought you wanted the
drawing."
"I do, or maybe a copy, but
you have to remember your first nude drawing. I mean, I went to the Getty
Center once and there were nude paintings there, so don’t all the great artists
do nudes?"
"Um…maybe…I don’t know…I
guess it depends on your definition of great."
"You’ll be a great artist
someday," she told him confidently. "I mean, you made me look
good."
"You’re not—"
"I know. I’m not ugly, but that
picture looks better than me in real life. Come on, put the date and my name…I
want to remember it, too."
"I don’t think I’m gonna
forget this," Jack mumbled as he scrawled the date and Susanna’s first
name at the bottom of the page. "Uh…what’s your last name?"
"Aguirre. Susanna
Aguirre." She blushed at the thought that she’d gotten a guy who didn’t
even know her last name to draw her naked. "Uh…there’s a photocopier over
there. It’s not too noisy."
"Okay." Jack went to
copy the sketch, then handed the original to Susanna. "Um…I think we
should keep these things hidden…so we don’t get into trouble."
"Yeah…probably."
Susanna looked down, carefully holding the drawing between two fingers.
"Um…Jack…thank you. I feel…uh…not so ugly now. I mean…well…I don’t feel as
weird…about this…" She gestured to her leg. "…and about being skinny
and bald. Uh…well…thanks."
"You’re welcome. Uh…thanks
for being my first nude subject."
Susanna grinned. "I guess
girls aren’t quite as scary as they used to be, are they?"
Jack laughed.
"Actually…no…girls aren’t quite as mysterious as they used to be."
"Wait until you have a
girlfriend. My dad’s been married three times, and he says he still doesn’t
understand women."
"I guess."
They laughed conspiratorially,
Susanna following Jack out of the physical therapy room.
January 5, 2002
"Good morning, Jack."
Dr. Patterson walked into the room and up to Jack’s bedside. "I have some
good news for you."
Jack looked at him hopefully.
"I’m in remission?"
"Not quite, but your test
results are very good."
"What’s the good news,
then?"
"Besides the fact that your
test results show that your white blood cell count is down? You’re not in
remission yet, but your leukemia is sufficiently under control that your
treatment can be continued on an outpatient basis."
"Really? I can go
home?"
"Yes, and if you can handle
it, you’ll be able to go to school."
"Yeah? I can finally go to
high school?"
"You can finally go to high
school."
"What did my parents
say?"
"I talked to your mother on
the phone this morning. She was very glad that you’ll be coming home."
"I’m glad, too. No offense,
but I want to do normal stuff again."
"None taken. You’ll go home,
and we’ll get someone in here who’s really sick."
"What about my medicine and
my chemo and radiation and tests?"
"You’ll come here for your
IV chemotherapy, your radiation therapy, and the tests to see how you’re doing.
If you continue to do this well, your treatment will be continued on an
outpatient basis. If you get worse, though, or if you can’t handle your medicine
at home, we’ll re-admit you."
"And what about
school?"
"You’ll be able to go to
school just like you normally would as long as you feel up to it. Your parents
have told me that you managed to pass everything last semester, so you should be
caught up already."
"All right! I gotta tell
Susanna about this!" Jack and Susanna had become good friends since he had
drawn her in the physical therapy room; he had made several more sketches of
her since then, both clothed and unclothed. There was no romantic attraction
between them, though—they regarded each other more as brother and sister than
anything else. Thus far, no one had caught on to the nude drawing sessions—as
far as they could tell, anyway.
Dr. Patterson laughed. "Go
ahead, Jack…it’ll probably cheer her up to hear that one of you is getting out
of here."
Jack slid out of bed, a grin
lighting his face. "I get to go home, I get to go to school like other
kids…I’m finally getting back to normal!"
"Just remember that you’re
not in remission yet," Dr. Patterson cautioned.
"I know, but…at least this
is more like normal." He smiled again, unable to repress his happiness.
Dr. Patterson chuckled.
"Good luck, Jack."
May 31, 2002
Jack reached over from where he
was sitting at his desk to answer the phone as it rang.
"Hello?"
"May I speak to James or
Lorraine Dawson, please?"
"They’re not here right now.
Can I take a message?"
"Is this Jack?"
"Yeah."
"Jack, this is Dr.
Patterson. I have your latest test results."
Jack’s heart skipped a beat, as
it always did when he got his test results. What if things had gotten worse?
What if the medicine had stopped working?
"What did they say? Is it
something bad?" Dr. Patterson himself had never called before.
"No. On the contrary, it’s
good news. You’ve achieved remission again."
"I have?! The leukemia is
gone?!"
"Yes, but you’ll still have
to come in for maintenance chemotherapy and continue taking medicine—"
"I don’t care. I was afraid
I’d never get back into remission!"
"Well, you made it.
Congratulations, Jack."
"Can I tell my parents, or
do I have to wait for you to tell them?"
"You can tell them, but they
need to call your me and your pediatric oncologist to set up your maintenance
schedule. If they don’t call by tomorrow, I’ll be calling back."
"They’ll call you. They want
me to stay well."
"Okay. Do you have my office
number, Jack?"
"Yeah, and so do they."
"All right, then, Jack. Have
them call me, and we’ll set up your first maintenance appointment."
"I’ll do that."
After he’d hung up the phone, Jack
jumped up and danced around, making a V for Victory sign. He’d done it. In
spite of the odds, he’d beaten leukemia twice, and he was sure that this time
it wouldn’t come back.