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READ A STORY,
SHARE A STORY
You
may think you are alone and no one
can understand how you are feeling.
Read on to share the fear, pain hope
and joy that others have experienced.
stories:
Parent
| Sibling
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Community
Carlos, Diagnosed
December 2001 at age 2 ½
When my little brother Carlos was
diagnosed with Leukemia, I didn't
know what to think of it. We were
all very little, and I wasn't sure
what was going on. At first, I thought
Leukemia was a kind of truck, because
Carlos loves to play with cars. Of
course, later I understood that he
was sick.
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He got all the attention,
which I can't blame him for, but did. Adults
would fuss over him, and whenever we got
to talk to people, they would ask, "How's
your brother?" It was a hard time for
my sister and me as well. He didn't really
know that he was sick. He thought finger
pricks tickled, and had an all round optimistic
look at everything going on. When he wasn't
feeling really sick he was still very energetic
and playful.
Carlos has
a big head of hair, and unlike most leukemia
victims, he kept it. His hair did fall out,
but only in the back so you couldn't tell
the difference. Some mornings he would wake
up with a couple of hairs on his pillow
and that was all. The only time it seemed
like there was a problem was when he spent
weeks at the hospital, or when he complained
about the lights being too bright.
Another thing
was his port. A medium sized lump on his
stomach-chest area. He thought nothing of
it, when we had guests, he would lift up
his shirt and show it to everyone.
Once we were
coming back from a party where they showed
the movie A Walk to Remember. The girl in
the movie dies of leukemia, and he said,
"You know, mom, that girl in the movie
died of leukemia, Not everybody does though.
I didn't." It really made me think,
because I wasn't sure he really caught the
concept he was sick when he was going through
it. He was getting toys, and watching movies,
and having dessert as meals. But he was
also going through Leukemia, and he survived.
It just makes you a lot more thankful for
an annoying, courageous seven-year-old brother.
— Julianna,
Age 11
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My story begins in December of 2001. I was just eight years old and in third
grade. I had had a normal school day, when the
principal called our classroom and told me that
my sister and I were to go home to our friend's
house, which we didn't think was weird at all;
we'd done this before. We spent the afternoon
there, had dinner, and even got into our pajamas
and got ready for bed. My Dad came and picked
us up, and we went home still thinking that nothing
was wrong. When we got to the house, my Dad took
us up to Julianna’s room and told us the
unimaginable. My 2 ½ year old baby brother
had been diagnosed with cancer. I panicked. My
sister and I started crying hysterically. We were
just seven and eight years old, and cancer was
such a scary word for us. Even worse, I had just
read the book A Thousand Paper Cranes, in which
that main character died of a type of leukemia,
the type of cancer that Carlos apparently had.
My Dad, sister and I packed up a bag to bring
to my Mom at the hospital, remembering to pack
a few toy cars for Carlos and some herbal teas
for Mom. My Dad left to deliver the bag to Yale,
while my Mom’s best friend Alison (the woman
whose house we spent the day at) watched us. The
first thing I did after my Dad left was write
in my diary. The last thing I wrote on the page
was a huge, broken heart that said "I'm so
sad!" written on the inside, with blue tears
surrounding it.
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School was so hard the next day. I told my whole
class about what happened, and everyone was so
supportive and caring, which did make making it
through the day a lot easier. However, when it
came time to tell my friends, I just broke down
on the playground and started crying. When they
told me that they understood because their grandparents
had cancer, I felt even more isolated. They couldn't
possibly understand; their grandfathers were old,
but Carlos was still a baby, and he was so close
to me. Although my friends thought that they were
helping, and a lot of the time they did, their
comfort at times felt false. Also, because my
friends were so young themselves, they wanted
to tell me about their problems, which I just
wasn't ready to handle. I wanted the focus to
be off of them and Carlos, and to be on me. Understandably,
I felt a little needy, especially in the beginning.
That first week that Carlos was in the hospital
was probably the hardest on me. I almost never
saw both parents together, and when I did, they
both were too run down to talk about anything
but Carlos. My Dad "quit" his job for
the rest of the year to help out, but he still
wasn't around very much. Yet, my family was my
biggest comfort to me. We held nearly nightly
family meetings, where our "American Girl
Dolls" vented about how annoying it was that
Carlos was getting all the attention. My sister
and I slept in the same bed for months. I practically
moved in with her, even taking up a drawer in
her room for some of my clothes. When Carlos had
to have treatment and was in the hospital for
a few days, my parents switched places every day
or so. Whenever this happened, my Dad took us
rock-climbing at a local gym to distract us. When
my Mom came home, we always had a "Girl's
Night", with dinner at a favorite restaurant,
a movie in bed, and a sleep over in Mommy and
Daddy's room, a rare and special treat before
Carlos got sick. It was a comfort to know that
we always had each other to help each other through
this difficult time.
When Carlos was home, nothing was the same. Before
he was diagnosed, I remember being in the middle
of a piano lesson downstairs, while upstairs,
both Carlos and my Mom were crying; Carlos in
pain, and my Mom out of helplessness. She could
do nothing to bring down his soaring temperature
and ease the pain. After diagnosis everything
changed again. Carlos was sluggish, often not
even getting out of bed for days at a time. He
watched Shrek so many times that my sister and
I can still quote entire scenes from the movie.
Carlos used to love pushing around his toy trucks,
and it used to annoy the entire family. The only
time I remember my Dad ever crying was when he
was picking up those toys, thinking about how
Carlos may never have the strength to play with
them again. On the flip side, Carlos was an amazing
patient. Whenever he did feel well enough to play,
he would. In the hospital, he used to stand on
his IV pole and have my Mom and Dad race him up
and down the hallways. He was still my annoying
little brother. His courage was unfailing, and
he almost always had a smile on his face, even
when his counts were so low he couldn't even leave
the house. His spirit amazed his doctors, his
teachers, and his family.
Today, after 2 ½
years of treatment and almost five years of being
in remission, Carlos is your average seven year
old. Besides having to go to the doctor's every
other month for a special check-up, he is exactly
like all of his classmates. He adores the movie
Cars, loves to play outside, is good at math,
and has a "girlfriend" named Lily. He'll
be going into second grade next fall, and next
January, we will be celebrating his five years
in remission mark, the "safe zone" for
cancer survivors. Our family has been made all
the stronger by going through this ordeal. We
still have family meetings when we need to, and
we all know that we will always be there for each
other. Throughout this whole situation, Carlos
is the only one who has gone unchanged. He is
still a happy-go-lucky little boy. Whenever I
think of what my family has been through, I can't
help but smile, because despite everything, we
are really lucky to have a person like Carlos
in out lives.
— Amanda, Age
13
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