This Booklet Is For You
You've Just Learned That Your Brother or Sister Has Cancer
Learning About Cancer
Cancer Treatment
Becoming a Stem Cell Donor
What Your Brother or Sister May Be Feeling
Changes in Your Family
How You Can Help Your Brother or Sister
Taking Care of Yourself
You and Your Friends
Finding Support
After Treatment
The Road Ahead
Learning More on Your Own
Appendix A: Monitoring Tests
Appendix B: Cancer Team Members
Acknowledgments
This Booklet Is For You
If your brother or sister has
cancer, this booklet is for you.
In this booklet you will:
- Hear from other teens
who - like you - have
a brother or sister
with cancer
- Find out what has helped
them
- Get ideas about people
to talk with when you're
upset or feel all alone
- Learn a little about cancer and how it's treated.
This booklet can't give you all the answers, but it can help you
prepare for some of the things you might face.
There is a team of people working hard to help your brother or
sister get better. You should know that there are also many people
available to help you. No one should go through this alone.
Free copies of this booklet are available from the National
Cancer Institute (NCI). To learn more about cancer or to
request this booklet, visit NCI's Web site (www.cancer.gov).
You can also call NCI's Cancer Information Service at
1-800-4-CANCER (1-800-422-6237) to order the booklet
or talk with an information specialist. |
|
You may want to read the booklet from cover to cover. Or maybe
you'll just read those sections that interest you most. Some
teens pull out the booklet now and again when they need it.
You may want to share this booklet with others in your family.
It might help you bring up something that has been on your
mind. You could ask people in your family to read a certain
chapter and then talk about it together.
We've put words that may be new to you in bold. Click on the word to see the definition.
Back to Top
You've Just Learned That Your Brother or Sister Has Cancer
"This is so unreal. I thought
only old people got really sick -
not little kids. My brother
Jason has cancer, and he is only
10 years old. We found out last
week, and it hasn't even sunk in
yet. I wake up every morning
thinking this is just a bad dream."
- Liza, age 15
You've just learned that
your brother or sister has
cancer. You may have a lot
of emotions - feeling
numb, afraid, lonely, or
angry. One thing is
certain - you don't
feel good.
For now,
try to focus
on these facts:
- Many kids survive
cancer. You have good reason to be hopeful that your brother
or sister will get better. Today, as many as 8 in 10 kids
diagnosed with cancer survive their illness. Many go on to
live normal lives. That's because scientists are discovering
new and better ways to find and treat cancer.
- You're not alone. Right now it might seem like no one else in
the world feels the way you do. In a way you're right. No one
can feel exactly like you do. But it might help to know that
there are other kids who have a brother or sister with cancer.
Talking to others may help you sort out your feelings.
Remember, you are not alone.
- You're not to blame. Cancer is a disease with many causes,
many of which doctors don't fully understand. But your
brother or sister did not get cancer because of anything you
did, thought, or said.
- You can't protect, but you can give comfort. Sometimes
you'll be strong for your brother or sister, and sometimes
your brother or sister will be strong for you. It's okay to talk
about how hard it is and even cry together.
- Knowledge is power. It can help to learn more about cancer
and cancer treatments. Sometimes what you imagine is
actually worse than the reality.
As you deal with your
sibling's
cancer, you may feel lots of different
emotions. Some of the emotions you may feel are listed below.
Check off all the feelings you have today:
Scared |
- My world is falling apart.
- I'm afraid that my brother or sister might die.
- I'm afraid that someone else in my family might catch
cancer. (They can't.)
|
I feel scared because:
It's normal to feel scared. Some of your fears may be real. Others
may be based on things that won't happen. And some fears may
lessen over time.
Guilty |
- I feel guilty because I'm healthy and my brother or sister
is sick.
- I feel guilty when I laugh and have fun.
|
I feel guilty because:
You might feel guilty about having fun when your sibling is sick.
This shows how much you care about them. But you should know
that it is both okay and important for you to do things that make
you happy.
Angry |
- I am mad that my brother or sister is sick.
- I am angry at God for letting this
happen.
- I am angry at myself for feeling the
way I do.
- I am mad because I have to do all the chores now.
|
I am angry because:
"Sometimes,
I
feel
mad
at
my
brother
for
having
cancer.
I
know
that's
not
right,
and
he
can't
help
it.
But
it
has
changed
everything.
My
mom
and
dad
don't
talk
about
anything
but
him,
and
neither
does
anyone
else.
It's
just
not
fair."
- Tyree,
age
13
Anger often covers up other feelings that are harder to show.
If having cancer in your family means that you can't do what you
like to do and go where you used to go, it can be hard. Even if you
understand why it's happening, you don't have to like it. But,
don't let anger build up inside. Try to let it out. And when you get
mad, remember that it doesn't
mean you're a bad
person or you don't
love your sibling. It
just means
you're mad.
Neglected |
- I feel left out.
- I don't get any attention any more.
- No one ever tells me what's going on.
- My family never talks anymore.
|
I feel neglected because:
"At
night
both
my
parents
go
in
my
sister's
room
to
talk
and
be
with
her.
I'm
the
youngest,
and
I
need
them,
too.
Do
they
both
have
to
be
with
her
every
night?"
- Sarah,
age
14
When your brother or sister has cancer, it's common for the
family's focus to change. Your parents don't mean for you to feel
left out. It just happens because so much is going on. You may
want to tell your parents how you feel and what you think might
help. Try to remember that you are important and loved and that
you deserve to feel that way, even though you might not get as
much attention from your parents right now.
Lonely |
- My friends don't come over anymore.
- My friends don't seem to know what to say to me anymore.
- I miss being with my brother or sister
the way we used to be.
|
I feel lonely because:
We look at some things that may help you deal with changes in
friendships in You and Your Friends, and at things others have done to stay
close to their siblings in How You Can Help Your Brother or Sister. For now, try to remember that
these feelings won't last forever.
Embarrassed |
- I'm sometimes embarrassed to be out in public with my
sibling because of how they look.
- I feel silly when I don't know how to
answer people's questions.
|
I feel embarrassed because:
It can help to know that other teens also feel embarrassed. So do
their siblings. In time it gets easier, and you will find yourself
feeling more comfortable.
Jealous |
- I'm feeling upset that my brother or
sister is getting all the attention.
|
I feel jealous because:
Even if you understand why you are getting less attention, it's
still not easy. Others who have a brother or sister with cancer
have felt the same way. Try to share your feelings with your
parents and talk about what you think might help.
"I
feel
so
bad
for
my
big
sister.
She's
sick
all
the
time.
She
used
to
be
the
one
I
looked
up
to,
and
now
everything
has
changed.
Now,
she
looks
to
me
for
support.
I
feel
like
I'm
having
to
grow
up
so
fast."
- Riley,
age
12
There is no one "right" way to feel. And you're not alone -
many other teens in your situation have felt the same way.
Some have said that having a brother or sister with cancer
changes the way they look at things in life. Some even said
that it made them stronger.
A lot of people are uncomfortable sharing their feelings. They
ignore them and hope they'll go away. Others choose to act
cheerful when they're really not. They think that by acting upbeat
they won't feel sad or angry anymore. This may help for awhile,
but not over the long run.
Actually, holding your feelings inside
can keep you from getting the help that you need.
Try these tips:
- Talk with family and friends that you feel close to. You owe it
to yourself.
- Write your thoughts down in a journal.
- Join a support group to meet other kids who are facing
some of the same things you are. Or meet with a counselor. We'll learn more about these options in Finding Support.
It is probably hard to imagine right now, but, if you let yourself,
you can grow stronger as a person through this experience.
"When
my
dad
comes
home
from
being
with
my
sister
at
the
hospital
all
day,
he
is
so
grumpy.
One
day
I
just
asked
him
why
he
always
seemed
so
mad
at
me.
He
got
quiet
and
said
he's
so
worried
and
stressed
that
even
little
things
set
him
off
.
.
.
and
that
being
on
edge
isn't
fair
to
me
and
my
other
sister.
Hearing
what
was
going
on
inside
my
dad's
head
made
me
realize
how
tough
this
whole
situation
is
for
him,
too.
It
made
me
feel
a
lot
closer
to
him,
instead
of
so
alone
and
mad."
- Kevin,
age
15
"It's a pain to do the dishes by myself all the time. Before he got sick
it was my brother's job to wash and my job to dry. We had a system."
- Justin, age 17
"I
had
to
give
up
going
to
drill
team
after
school
because
I
had
to
be
home
to
take
care
of
my
little
sisters
while
Mom
took
Jay
to
the
doctors."
- Becky,
age
16
"I
was
so
scared
when
I
found
out
that
my
brother
had
cancer.
In
the
movies
cancer
always
seems
so
terrible.
Then
I
realized
that
I
didn't
really
know
that
much
about
cancer.
I
started
reading
and
learned
a
lot.
I
found
out
that
most
kids
survive
cancer."
- Rashid,
age
14
Back to Top
Learning About Cancer
Learning about cancer and your brother's or sister's treatment
can help you feel less afraid. Some of what you have seen or
heard about cancer may not apply. Most people feel better when
they know what to expect.
Here are a few facts to remember:
- Nothing you did, thought, or said caused your
brother or sister to get cancer.
- You can't catch cancer from another
person.
- Scientists are finding many new and
better
ways to
find and
treat
cancer.
- Most kids
survive
cancer.
"I
got
really
mad
at
Chrissy
one
day.
She
wouldn't
let
me
ride
her
bike.
I
got
mad
and
said,
'I
wish
you
were
dead.'
Now
she
has
leukemia.
I
thought
maybe
it
was
my
fault.
I
was
scared
to
tell
anyone
because
then
they'd
all
know
what
I
did
and
be
mad.
But
my
dad
heard
me
crying
one
night,
and
got
me
to
talk
to
him.
He
said
it
wasn't
my
fault
or
anybody's
that
Chrissy
has
cancer."
- Katie,
age
13
Doctors have found more than 100 different types
of cancer. Cancer is a group of many related
diseases that begin in
cells, the body's basic unit of
life. To understand cancer, it's helpful to know what happens
when normal cells become cancer cells.
Normally, cells grow and divide to make more cells only when the
body needs them. This orderly process helps to keep the body
healthy. Sometimes, however, cells keep dividing when new cells
aren't needed. These extra cells form a mass of
tissue, called a
growth or
tumor. Tumors can be benign or malignant:
- Benign tumors aren't cancerous. They can often be
removed and don't spread to other parts of the body.
- Malignant tumors are cancerous. Cells in these tumors
are abnormal and divide and grow without control or order.
They can invade and damage nearby tissues and spread to
organs in other parts of the body. The spread of cancer from
one part of the body to another is called metastasis.
Most cancers are named for the organ or type of cell in which they
begin. For example, cancer that begins in the bone is called bone
cancer. Some cancers do not form a tumor. For example,
leukemia, which is the most common cancer among children, is a
cancer of the bone marrow and blood.
The causes of most cancers aren't known. Cancer
among children does not happen that often. Scientists
are still trying to learn more about why some kids get
cancer and others don't.
If you are worried that you may get cancer, you should know that
most cancers don't run in families. You and your parents can talk
to a doctor for more information.
Every year scientists discover better ways to treat cancer. That
means many people are successfully treated for cancer. However,
doctors are careful not to use the word "cure" until a patient
remains free of cancer for several years. Cancer treatment may
cause a remission, which means that the doctor can't find signs
of cancer. But sometimes the cancer comes back. This is called a
relapse or recurrence. Whether your brother or sister will be
cured of cancer depends on many things. No booklet can tell you
exactly what to expect. It is better to talk with your parents and
your sibling's doctor or nurse.
Where to go for more information |
To learn more about the type of cancer your brother or sister
has, visit the National Cancer Institute's (NCI) Web site
(http://www.cancer.gov). You can also call NCI's Cancer
Information Service at 1-800-4-CANCER (1-800-422-6237)
to talk with an information specialist. All calls are free and
confidential.
|
Back to Top
Cancer Treatment
You may want to know
what to expect during
your brother's or
sister's cancer
treatment.
This section briefly
explains different
treatments. It talks
about how they work
and their side effects.
You will
probably have more
questions after
reading this section.
It may help to talk with your
parents. Or ask if you can talk
with your sibling's nurse or
social worker.
"Rachel
had
all
this
beautiful
hair.
But
during
treatment,
she'd
wake
up
and
find
hair
all
over
her
pillow.
It
would
also
fall
out
when
she
combed
or
washed
it.
I
could
hear
her
crying
in
the
bathroom.
One
day
Mom
helped
her
shave
her
head.
Then
we
bought
and
decorated
some
bandanas
together.
They
look
good
on
her.
My
sister
is
my
hero."
- Lauren,
age
12
Cancer treatment aims to get rid of cancer cells. The type of
treatment your brother or sister will be given depends on:
- The type of cancer
- Whether the cancer has spread
- Your sibling's age and general health
- Your sibling's medical history
- Whether the cancer is newly diagnosed or has recurred.
Remember that there are more than 100 different types of cancer,
and each type is treated differently.
Treatment follows a protocol, which is a treatment plan. But even
if two people have the same type of cancer and the same
treatment plan, it may not work the same way for both of them.
This is because people's bodies can react differently to treatment.
Most children with cancer are treated at large pediatric cancer
centers in clinical trials. A clinical trial is a study that helps show
how, for example, a promising anticancer drug, a new test, or a
possible way to prevent cancer affects the people who receive it.
Side effects happen because the cancer treatment targets fastgrowing
cells. Cancer cells are fast growing, but so are normal
cells like the ones in the digestive tract and hair, for example.
The treatment can't tell the difference between fast-growing
normal cells and fast-growing cancer cells. That's why people
sometimes get sick to their stomach and lose their hair when they
have chemotherapy (one type of cancer treatment).
Some side effects, like feeling sick to the stomach, go away
shortly after treatment, while others, like feeling tired, may last a
while after treatment has ended.
Write down what treatment your brother or sister will get:
Use the chart on the next two pages to find out more about
different types of cancer treatment.
The chart describes six types of cancer treatment, how they're
done, and some of the side effects. Your brother or sister may
get one or more of these treatments. Depending on the exact
treatment, they may visit the doctor during the day, or they
may stay overnight in the hospital.
Treatment |
What is it? |
How is it done? |
What may
happen as a
result?
(side effects) |
Surgery
Also called an
operation |
The removal
of all or part of
a solid tumor |
A surgeon
operates to
remove the
cancer. Drugs are
used so that the
patient is asleep
during surgery. |
- Pain after the
surgery
- Feeling tired
- Other side effects,
depending on the
area of the body
and the extent of
the operation.
|
Radiation
therapy
Also called
radiotherapy |
The use of
high-energy
rays or
high-energy
particles to kill
cancer cells
and shrink
tumors |
Radiation may
come from a
machine outside
the body or from
radioactive
material placed in
the body near the
cancer cells. |
- Feeling tired
- Red or blistered
skin
- Other side
effects,
depending on
the area of the
body and the
dose of
radiation.
|
Chemotherapy
Also called
chemo |
The use of
medicine to
destroy
cancer cells |
The medicine can
be given as pills,
through an
injection (shot), or
through an
intravenous (IV)
line. It is often
given in cycles
that alternate
between treatment
and rest periods. |
- Feeling sick to
the stomach or
throwing up
- Loose bowel
movements or not
being able to go
to the bathroom
- Hair loss
- Feeling very
tired
- Mouth sores
- A feeling of
numbness,
tingling, or
burning in the
hands and feet.
|
Stem cell
transplantation
Can be a bone
marrow
transplantation
(BMT) or a
peripheral blood
stem cell
transplantation
(PBSCT) |
The use of
stem cells
found in either
the bone
marrow or the
blood. This
repairs stem
cells that were
destroyed by
high doses of
chemo and/or
radiation
therapy. |
Stem cell
transplantation
uses stem cells
from the patient or
from donors. In
many cases, the
donors are family
members. The
patient gets these
stem cells through
an IV line. |
- The side effects
can be much like
those from
chemo and
radiation. In
some cases, the
side effects may
be worse.
|
Hormone
therapy |
A treatment
that adds,
blocks, or
removes
hormones
from the body.
Hormone
therapy is
especially
useful to slow
or stop the
growth of
some types of
cancers. |
Hormone therapy
can be given as a
pill, through an
injection, or
through a patch
worn on the skin.
Sometimes
surgery is needed
to remove the
glands that make
specific hormones. |
- Feeling hot
- Feeling tired
- Weight changes
- Mood changes.
|
Biological
therapy
Also called
immunotherapy |
Biological
therapy uses
the body's
own defense
system (the
immune
system) to
fight cancer
cells. |
Patients may be
given medicine in
pills, through an
injection, or
through an IV line. |
- Chills/fever
- Muscle aches
- Weakness
- Feeling sick to
the stomach or
throwing up
- Loose bowel
movements.
|
Your brother or sister will get tests to monitor the cancer and how
the treatment is working. See
Chart A in the back of this booklet
for a list of some common monitoring tests.
Some treatments may make your brother or sister more likely to
get an infection. This happens because cancer treatment can
affect the white blood cells, which are the cells that fight
infection. An infection can make your brother or sister sicker. So
your sibling may need to stay away from crowded places or people
who have an illness that he or she could catch (such as a cold, the
flu, or chicken pox).
Because of this, you may need to:
- Wash your hands with soap and water often to keep from
spreading germs
- Tell a parent when you've been around someone who's sick
or has a cold
- Stay away from your brother or sister if you get sick.
It's hard to wait to see how well the treatment will work. Your
brother's or sister's doctor may try one treatment, then another.
One day your brother or sister may feel a lot better, and the next
day or week they may feel sick again. Treatment can go on for
months or sometimes years. This emotional roller coaster is hard
on everyone.
During this time, remember that the treatment is working to stop
the cancer and make your brother or sister better. For more
information about the people who will be treating your brother
or sister, see
Chart B
in the back of this booklet.
"I looked forward to the
times I got to visit my big
sister when she was in the
hospital. Sometimes it was
really sad to see Tara in bed
because she looked so weak.
But I am glad I went. Now
my sister is home, so I get to
see her again."
- Allie, age 14
Close to home
If your brother or sister is in a hospital near you,
you may be able to visit.
Learn ahead of time
how your sibling is
doing and what to
expect. You can read
together, draw, play
games, or sit and talk.
Some teens also want
to help care for their
brother or sister. Ask
the nurse what you can
do if you are interested.
Far from home
When your brother or sister is getting treatment far from home,
you may not be able to visit them as often. It will help you both
to stay in touch. Talk on the phone. You can also send cards,
letters, or pictures
back and forth.
During your brother's or sister's treatment,
you may go through a whole new range of
feelings.
Does this sound like how you feel
sometimes?
- I feel frustrated.
- I feel left out.
- I feel invisible - my sibling is getting all
the attention.
- I feel like treatment has gone on so long.
- I am so sad that my sibling is so sick.
- I wonder why this is happening to
our family.
- Some days I want to know all the
details about treatment. Other days I
just want to forget it ever happened.
All of these feelings are natural. Try to share
your thoughts with your friends, parents, or
another trusted adult. This time can be
tough on every member of your family.
Talking things through can help when you are
feeling left out, sad, or confused.
Where to go for more information |
To learn more about cancer treatments, visit the NCI Web
site (http://www.cancer.gov). Look for the booklets
Chemotherapy and You, and
Radiation and You, among
others. You can also call the NCI's Cancer Information
Service at 1-800-4-CANCER (1-800-422-6237) to talk
with an information specialist. All calls are free
and confidential.
|
"One day I went to the clinic with my brother for his treatment.
I saw the machine that he gets radiation from.
I got to meet his doctor and nurses and see lots of other kids with cancer.
I still wish Jake's treatment was over, but I feel better knowing more about what is going on."
- Matthew, age 15
Most kids get treated at cancer treatment centers that are just for
children and teens. There may be a center near you. Or your
brother or sister may have to get treatment in another city or
state. Your parent and your sibling, or your whole family, may go
live in a new city during treatment.
"At
first
I
didn't
ask
any
questions,
although
I
had
a
lot
of
them.
I
thought
people
would
think
I
was
really
dumb,
but
now
I
know
it
really
helps
to
ask."
- Brad,
age
15
Ask your parents or another trusted adult any questions that you
have. Ask if you can go along and maybe talk with a
doctor or nurse when your
parents take your brother
or sister to the doctor.
To make things easier:
- Make a list of questions
and bring the list
with you.
- Ask people to
explain things
using simple words.
- Ask for the information to be repeated.
- Ask the doctor or
nurse to show you
things on a model
or draw a picture.
Questions you might want to ask |
- What kind of cancer does my brother or sister have?
- Will my brother or sister get better?
- What are the chances I will get this kind of cancer, too?
|
Questions about the treatment |
- What kinds of treatment will my brother or sister get?
Will there be more than one?
- How do people feel when they get this treatment? Does it
hurt?
- How often is this treatment given? How long will it last?
- Does the treatment change how people look, feel, or act?
- What happens if the treatment doesn't work?
- Where are treatments given? Can I come along?
|
Write down your own questions: |
It's okay to ask these questions more than once.
|
"I
was
surprised
to
find
out
about
stem
cell
donation
because
I
didn't
think
I
would
have
any
role
in
my
sister's
treatment.
So
when
I
was
asked
to
be
a
donor,
I
felt
like
it
was
a
chance
to
help
her
in
an
important
way.
At
first
I
had
a
lot
of
questions.
A
nurse
was
the
person
that
helped
me
the
most."
- Ethan,
age
17
Back to Top
Becoming a Stem Cell Donor
In the section on
Cancer Treatment we listed bone marrow transplantation (BMT) and
peripheral blood stem cell transplantation (PBSCT) as possible
cancer treatments.
Only some children with cancer get these
treatments. If your sibling is going to receive one of them,
you may find it helpful to read this section. Otherwise, you
can skip it.
Sometimes very high doses of chemo and/or radiation therapy
are used to treat cancer. These treatments destroy cancer cells
but also wipe out good cells, like stem cells.
Stem cells make the blood cells needed to carry oxygen to all the
parts of the body (red blood cells), fight infection (white blood
cells), and prevent bleeding (platelets). Most are found in the
bone marrow - the spongy material that fills the inside of bones.
Some are also found in the bloodstream.
Healthy stem cells collected from a brother or sister are
transplanted into the sibling with cancer. The stem cells travel
to the bone marrow and make new red blood cells, white blood
cells, and platelets. These new cells help your brother or sister
recover from the cancer treatments.
A stem cell donor can be a brother or sister or a
volunteer (from the National Marrow Donor Program®).
Stem cells can also be collected from the patient's own body
prior to cancer treatment and stored for later use.
Facts about donors:
- A donor is a person whose stem cells match those of the
person with cancer. Not everyone is a match.
- A patient's brother or sister is more likely to match than
someone who is not related.
- In one out of four cases, a brother or a sister is a good match.
- When no one in the family is a match, the medical team can
look for a volunteer donor from around the world.
|
- "I was scared. No doubt about it - the thought of being a
donor made me nervous 'til I knew what was going to happen."
- "I didn't feel like I had a choice until my parents said it
was up to me to decide if I wanted to do this or not."
- "I felt my big brother and my whole family were counting
on me for this to work. I am glad that it did!"
If you agree to be a donor, the doctor will do a special blood test
to find out whether you are a match for your brother or sister. The
test will show whether your stem cells are a good match or not.
"I
was
so
disappointed
that
neither
my
sister
Heather
or
I
were
a
match
for
our
little
sister
Taylor
who
has
cancer.
No
one
blamed
us - but
it
was
still
hard.
Now
the
doctors
are
trying
to
find
a
match
from
other
donors."
- Caitlin,
age
13
You may be tested and find out that you are not a match.
You may feel disappointed or that you
are letting your brother or
sister down. It's important to
know that it's not your fault if
you are not a match. While it's
natural for your family to feel
down, no one should be upset
with you.
Don't be afraid to ask questions about anything that you don't
understand or feel comfortable about. Write down some of
your questions:
"The
doctor
told
me
I
was
a
match
for
my
brother
Chris.
My
mom
said
it
was
my
choice - I
did
not
have
to
be
a
donor
if
I
didn't
want
to.
But
even
though
I
was
kind
of
nervous,
I
wanted
to
do
it.
Chris's
doctor
met
with
us
to
explain
what
would
happen.
I
hope
this
will
help
my
brother."
- Amber,
age
15
"It didn't hurt as much as
I thought it would to be
Jada's donor. Before I knew
it, I was playing softball
again. My advice to other
kids who want to be donors is
to ask questions - lots of them.
It would have helped me to be
more prepared. I really didn't
know what to expect."
- Anthony, age 16
|
For a bone marrow transplantation (BMT), the doctors
collect stem cells from your bone marrow. Before the doctor
collects the stem cells, you will get medicine to help you fall
asleep. Then the doctor will put a needle into your hip bone to
collect the bone marrow. You won't feel pain from the needle
because you will be asleep. Afterwards, you may be a little stiff
or sore for a couple of days at the place where the needle went in.
For a peripheral blood stem cell transplantation (PBSCT),
the doctors collect stem cells from your blood. A doctor will take
blood from you, usually through a vein in your arm. Your blood
will go through a machine that removes the stem cells. Then your
blood is put back into you. The stem cells are stored and later
given to your sibling through a transfusion.
|
"I
turned
out
to
be
a
match
for
my
brother
David.
The
bad
news
was
that
the
transplant
didn't
help
my
brother.
I
felt
like
I
had
really
let
him
down.
But
David
told
me
not
to
feel
bad
about
it.
He
told
me
how
much
it
meant
to
him
that
I
even
gave
it
a
try."
- Jason,
age
15
No one can guarantee that the transplant will make your sibling
get better, but the chance to help your brother or sister can be
very rewarding. It can help you feel more involved. However, it
can be difficult if the transplant doesn't work. Know that it
wasn't your fault. You did what you could, and
no one should blame you.
What about other questions that I have? |
Ask any questions that you have. Doctors, nurses, and social
workers can all help you. So can your parents. Your family can
also get more information from the National Marrow Donor
Program®. It is an organization that keeps a list of volunteer
donors and transplant centers. Call 1-800-MARROW-2
(1-800-627-7692) or go to http://www.marrow.org.
|
Back to Top
What Your Brother or Sister May Be Feeling
Just like everyone else, your brother or sister may be worried,
scared, or confused. They may also feel tired and sick because of
the treatment. Some kids feel embarrassed because treatment
has changed the way they look and feel. You both may be having
a lot of the same feelings.
Knowing how your brother or sister might be feeling could help
you figure out how to help, or at least understand where they are
coming from.
Here are a few things young people with cancer have felt:
Afraid |
"It's
scary
to
learn
that
you
have
cancer.
Will
the
treatment
hurt?
Who
are
all
these
doctors
and
nurses
prodding
at
me
and
asking
me
questions?
I
don't
like
not
knowing
what
will
happen.
I
don't
like
not
knowing
if
I
will
get
better."
- Tamara,
age
13
Depending on how old
your brother or sister
is and how they react
to tough situations,
they may be more or
less afraid.
|
Sad or Depressed |
"I
hate
it
that
I
can't
do
a
lot
of
the
things
I
used
to
do.
I
miss
hanging
out
with
my
friends.
I
never
thought
I
would
say
this,
but
I
even
miss
school.
A
lot
of
the
time
I
just
don't
want
to
talk
at
all,
and
when
I
do,
I
can't
be
cheerful
and
happy
all
the
time."
- Ryan,
age
15
People with cancer
sometimes can't do
things they used to do.
They may miss these
activities and their
friends. Feeling sad or
down can range from a
mild case of the blues
to depression, which
a doctor can treat.
|
Angry |
"I
admit
it.
I
am
not
nice
a
lot
of
days.
I
feel
ticked
off.
People
get
on
my
nerves.
I'm
like - why
is
this
happening
to
me?
Some
days
I
just
feel
mad
about
everything."
- Jeremy,
age
16
Cancer and treatment
side effects can cause
your brother or sister
to be mad or grumpy.
Anger sometimes
comes from feelings
that are hard to show,
like being afraid,
being very sad, or feeling helpless. Chances are
your sibling is angry at the disease, not at you.
|
Guilty |
"Everything
is
different
now
that
I
have
cancer.
It's
like
the
whole
family
just
stopped
doing
what
they
were
doing.
I
know
my
sisters
can't
be
happy
about
that.
They
have
to
do
all
the
chores.
My
older
sister
had
to
stop
cheerleading
so
she
could
take
care
of
my
little
sister
after
school.
I
feel
guilty
that
I
brought
this
on."
- Nicole,
age
14 Your brother or sister
may feel guilty that they
caused changes in your
family's life. But just as
you did not cause this
situation to happen,
neither did your
brother or sister.
|
Hopeful |
"I
keep
the
faith.
I
put
up
a
huge
sign
in
the
living
room
that
says
'If
you
have
to
be
blue,
be
a
bright
blue.'
My
three
brothers
and
I
used
all
these
blue
colored
markers
and
we
decorated
it
with
glitter.
I
have
to
keep
believing
that
I
will
get
cured.
It
is
what
keeps
me
going."
- Julie,
age
16
There are many reasons
for your brother or sister
to feel hopeful. Most
kids survive cancer, and
treatments are getting
better all the time.
Hope can be an
important part of your
brother's or sister's
recovery.
|
All of these feelings
are normal for a person living with cancer.
You might want to share this list with your sibling.
Ask them how they are feeling.
Dear
Diary,
What
is
going
on?
Everything
is
changing
so
fast.
Six
months
ago
I
was
the
little
sister
ready
to
start
high
school.
Now
I
am
the
most
adult
one
in
the
family.
Since
Jill
got
sick,
Mom
is
a
mess - sad
and
stressed
all
the
time.
She
thinks
we
don't
see,
but
we
do.
All
our
time
is
spent
going
to
Jill's
doctor
visits.
Dad
works
day
and
night
and
all
Jill
does
is
lie
around
and
listen
to
music.
I
know
the
cancer
makes
her
mad,
but
does
she
have
to
shut
me
out?
Is
my
family
ever
going
to
get
back
to
normal
again?
- Beth,
entry
from
September
18th
Back to Top
Changes in Your Family
Your family may be going through a lot of changes. You may be
the oldest, youngest, or middle child in your family. You may live
with one parent or two. Whatever your family situation, chances
are that things have changed since your brother or sister got sick.
This section looks at some of these changes and ways that others
have dealt with them.
Does this sound like your home? |
- Are you doing more chores?
- Are you spending more time with
relatives or friends?
- Are you home alone more?
- Are you asked to help make dinner or
do the laundry?
- Are you looking after younger brothers
or sisters more?
- Do you want to just hang out with your
friends when you are needed at home?
|
Does this sound like you? |
- Do you feel like you have to be perfect and good
all the time?
- Do you try to protect your parents from anything that
might worry them?
- Do you feel like yelling, but hold it in because you don't
want to cause trouble?
No one can be perfect all the time. You need time to feel sad or
angry, as well as time to be happy. Try to let your parents and
others you trust know how you're feeling - even if you have to
start the conversation.
|
Your Relationship With Your Parents |
Your parents may ask you to take on more responsibility than
others your age. Your parents may be spending more time with
your brother or sister. You might resent it at first. Then again,
you may grow and learn a lot from the experience. See
Finding Support
for tips on talking with your parents.
|
Families say that it helps to make time to talk together - even if it's
only for a short time each week. Talking can help your family stay
connected. Here are some things to consider when talking with:
Other brothers and sisters
- If you are the oldest child, your
younger brothers or sisters may
look to you for support. Help
them as much as you can.
It's okay to let them know
that you are having a
tough time, too.
- If you are looking to your
older brother or sister for
help, tell them how you
are feeling. They can
help, but they may not
have all the answers.
Try saying
something
like this:
Your parents
- Expect your parents to feel some stress, just like you may.
Your parents may not always do or say the right thing.
- Try to make the most of the time you do have with your
parents. Let them know how much it means to you. Maybe
you can go out to dinner together, or they can come to your
sports game, from time to time.
- Sometimes you may have to take the first step to start a
conversation. You may feel guilty for wanting to have your
needs met - but you shouldn't. You are important and
loved, too.
- Keep talking with your parents, even though it may be hard.
Try saying something like this:
Try saying something like this:
Your brother or sister with cancer
- Your brother or sister may be sick from the treatment
and want to be alone. Or maybe they feel
okay and want your company.
Try saying
something
like this:
"I
just
wasn't
ready
for
all
these
changes.
My
sister
Kelly
and
I
had
always
shared
a
bedroom.
But
when
she
got
sick,
she
got
the
bedroom
because
Mom
and
Dad
had
to
keep
coming
in
during
the
night.
Some
nights
I
had
to
sleep
on
the
couch
in
the
living
room.
My
brother
Tim
and
I
can't
even
have
friends
over
as
much
anymore
because
they
could
bring
germs
when
Kelly
is
sick.
It's
very
different
now."
- Jessica,
age
13
If you're used to talking
openly at home, you might
find that your parents
aren't sharing as much
anymore.
Maybe they're trying to
protect you from bad
news or unsure about
what to tell you. Some
teens want to know a lot,
while others only want
to know a little. Tell your
parents how much you
want to know.
Over the next few weeks or months, you may overhear parts of
your parents' conversations. If what you hear confuses or scares
you, talk with your parents about what you heard.
Challenge |
Solution |
It's getting to
be too much
to answer
the phone
all the time
and tell
people
how your
brother or
sister is doing. |
Ask others to help you
share news of how your brother
or sister is doing. Maybe a
relative or family friend can be
the contact person and help let
others know how your brother or
sister is doing. Some families
use a Web site or e-mail listserv
to share this information. |
Challenge |
Solution |
Your family
can't keep up
with the
house,
meals,
and other
activities |
Friends and neighbors
often want to help make meals, clean,
drive, or look after you and your siblings.
Make a list with your parents
of what needs to get done.
Keep the list by the phone.
When people ask
what they can do to help,
pull out the list. |
"My
family
wasn't
really
close
before
my
sister
Gina
got
cancer.
We
used
to
go
our
own
way
and
never
did
much
together.
When
Gina
got
sick,
we
started
pulling
together
more.
We
talked
to
our
pastor
about
how
much
more
each
day
meant.
Now
it
seems
like
even
simple
things
are
special - like
eating
dinner
together
as
a
family."
- Jared,
age
13
Some families can
grow apart for a while
when a child has
cancer. But there are
ways to help your family
grow stronger and closer.
Teens who saw their
families grow closer say
that it happened because
people in their family:
- Tried to put themselves
in the other person's
shoes and thought about
how they would feel if they were the other person
- Understood that even though people reacted differently to
situations, they were all hurting. Some cried a lot. Others
showed little emotion. Some used humor to get by.
- Learned to respect
and talk about
differences. The
more they asked
about how others
were feeling, the
more they could
help each other.
"We all acted differently when
my middle brother Terrell got
cancer. My younger brother
started acting like a baby again
and my older brother never
seems to be home. I'm the only
girl and feel like I have to hold
it all together for my whole
family."
- Keisha, age 14
You and your family may need support from others. It can be
hard to ask. Yet most of the time people really want to help, so
don't hesitate to ask.
"Brian
and
I
are
not
just
brothers,
we're
best
friends.
When
he
got
sick,
it
was
so
hard
for
me
that
I
didn't
feel
like
doing
anything
or
talking
to
anyone.
I
felt
down
a
lot,
but
I
didn't
let
anyone
know.
Being
at
home
wasn't
much
fun
because
Brian
was
always
so
sick.
My
math
teacher
noticed
that
I
was
different
and
asked
me
what
was
up.
It's
been
good
to
have
someone
I
can
go
to
when
I
need
to
get
things
off
my
chest."
- Mike,
age
18
People that you or your parents may ask for help:
- Grandparents, aunts, and uncles
- Family friends
- Neighbors
- Teachers and coaches
- People from your religious community
- Your friends and their parents
- School nurses and guidance counselors.
Ways people can help you:
- Help with homework.
- Talk with you and listen to you.
- Give rides to school or practice.
- Invite you over or on weekend outings.
Other things people can do to help around the house:
- Buy groceries or run errands.
- Make meals.
- Mow the lawn.
- Do chores around the house.
What are some other ways that people can help you?
List some ideas here:
Back to Top
How You Can Help Your Brother or Sister
"People
used
to
call
Jessie
and
me
'the
twins.'
We
are
13
months
apart,
but
we
look
so
much
alike
and
we
were
always
together.
Now
that
Jess
has
cancer
she's
lost
all
her
hair
and
--well,
unfortunately,
people
can
tell
us
apart.
Last
week
I
decided
to
do
something
pretty
drastic
to
show
my
sister
how
much
I
love
her.
I
shaved
my
head!
Now,
I
am
not
saying
that
is
the
right
thing
for
all
sisters
to
do--but
it
felt
like
the
right
thing
for
us."
- Renee,
age
15
This section has some
things that others have
done to help their
brother or sister. Pick
one or two things you
may want to try this
week. Then pick a
couple more
next week.
- Hang out together. Watch a movie together. Read or
watch TV together. Decorate your brother's or sister's
bedroom with pictures or drawings. Go to the activity room
at the hospital and play a game or do a project together.
- Comfort one another. Just being in the same room as your
brother or sister can be a big comfort. Do what feels best for
the two of you. Give hugs or say "I love you." Laugh or cry
together. Talk to one another. Or just hang out in silence.
- Help your brother or sister stay in touch with friends.
Ask your sibling's friends to write notes, send pictures, or
record messages. Help your brother or sister send messages
to their friends. If your brother or sister is up for it, invite
friends to hang out with them.
- Share a laugh. You've probably heard that laughter is good
medicine. Watch a comedy or tell jokes together, if that is
your thing.
- Be patient. Be patient with each other. Your brother or
sister may be cranky or even mean. As bad as you feel, your
brother or sister is probably feeling even worse. If you find
you are losing your cool, go for a run, read, or listen to music.
- Make a snack. Make a snack for the two of you to share.
Make a picnic by putting a blanket on the porch or in the
bedroom.
- Buy a new scarf or hat. Your brother or sister might like a
new hat or scarf if they have lost their hair during treatment.
Get a matching hat or scarf for yourself, too.
- Try to be upbeat, but be "real," too. Being positive can
be good for you and your whole family. But don't feel like
you have to act cheerful all the time if that's not how you
really feel. Try to be yourself.
Keep a journal together. Write thoughts or poems,
doodle, or put photos in a notebook. Take turns with your
sibling writing in a journal. This can help you both share
your thoughts when it might be hard to talk about them.
Go for a walk together. If your brother or sister feels up to
it, take a walk together. Or, open a window or sit on the front
porch together.
The ideas above are for those times when you have extra energy
to give. Don't forget to take care of yourself, too. You deserve it.
Read more about taking care of yourself in the section
Taking Care of Yourself.
Can you think of some other ways to help your brother
or sister? Make your own list
here:
Back to Top
Taking Care of Yourself
"When
we
found
out
my
sister
Kiana
had
cancer,
we
all
seemed
to
focus
on
her--and
nothing
else.
I
was
so
worried
that
I
stopped
hanging
out
with
friends
and
quit
training
for
track
meets.
One
day
my
mom
said
that
giving
up
all
these
things
wasn't
good
for
me.
She
said
it
was
okay
to
have
fun
and
practically
pushed
me
out
the
door
to
start
going
to
track
again.
I
didn't
think
anyone
noticed
me,
but
I'm
glad
my
mom
did!
She
even
came
to
my
next
track
meet!"
- Patrick,
age
16
You may be so focused on your sick brother or sister that you
don't think about your own needs, or if you do, they don't seem
important. But they are! Read this section to learn ways to stay
balanced at a time when everything may feel up in the air.
Stress can make you forgetful, frustrated, and more likely to
catch a cold or the flu. Any way you look at it, too much stress
isn't good.
Here are some tips that have worked to help other teens manage
stress. In the lists on the next few pages, check one or two
things to do each week.
- Stay connected.
- Spend some time at a friend's house.
- Stay involved with sports or clubs.
- Add your own here:
- Relax and get enough sleep.
- Take breaks. You'll have more energy and be in a
better frame of mind.
- Get at least 8 hours of sleep each night.
- Pray or meditate.
- Make or listen to music.
- Add your own here:
Help others.
- Join a walk against cancer.
- Plan a bake sale or other charity event to collect money
to fight cancer.
- Add your own here:
Avoid risky behaviors.
- Stay away from smoking, drinking, and other risky
behaviors.
Put your creative side to work.
- Keep a journal to write down your thoughts and
experiences.
- Draw, paint, or take photographs.
- Read books or articles about people who have made it
through difficult experiences in life. Learn what
helped them.
- Add your own here:
Eat and drink well.
- Switch to caffeine-free drinks in the evening that
won't keep you awake.
- Grab fresh fruit, whole-grain breads, and lean meats
like chicken or turkey when you have a choice.
- Avoid foods that have a lot of sugar.
- Drink 6-8 glasses of water a day to help prevent fatigue.
- Add your own here:
Be active.
- Play a sport or go for a run.
- Take the dog for a walk.
- Learn about different stretching and breathing
exercises.
- Add your own here:
Did you know? |
Exercise has been proven to make you feel better.
Running, swimming, or even walking at a fast pace
can help improve your mood.
|
"It sounds weird - since my family didn't used to be that
organized - but keeping track of everything on a calendar really helped us
stay on track. It made everything feel more under control - especially
when things got a little crazy."
- Eric, age 17
Staying organized can also keep your stress level under control.
Here are some tips to get you started.
- At home
- Make a list of things you want to do. Put the most
important ones at the top.
- Make a big calendar to help your family stay on top of
things.
- At school
- Let your teachers know what's happening at home,
without using it as an excuse.
- Talk to your teachers or a counselor if you are falling
behind. They can help you.
The ideas listed above may help. You may also have others that
would work even better. Write down your ideas below:
Many teens feel low or down when their brother or sister is sick.
It's normal to feel sad or "blue" during difficult times. However,
if these feelings last for 2 weeks or more and start to interfere
with things you used to enjoy, you may be depressed.
The good
news is that there is hope and there is help. Often, talking with a
counselor can help. Below are some signs that you may need to
see a counselor.
Are you:
- Feeling helpless and hopeless? Thinking that life has
no meaning?
- Losing interest in being with family or friends?
- Finding that everything or everyone seems to get on
your nerves?
- Feeling really angry a lot of the time?
- Thinking of hurting yourself?
Do you find that you are:
- Losing interest in the activities you used to enjoy?
- Eating too little or a lot more than usual?
- Crying easily or many times each day?
- Using drugs or alcohol to help you forget?
- Sleeping more than you used to? Less than you used to?
- Feeling tired a lot?
"It got to the point where I was
feeling down all the time, like
I just didn't have any energy
and nothing seemed fun anymore.
I even stopped hanging out with
my friends. I felt like I couldn't
tell anyone what was going on,
not even my family. But then
I started talking with a counselor
and now things are getting back
on track."
- Jake, age 17
It's important to talk to someone you trust. Going to see a
counselor doesn't mean that you are crazy. In fact, it means
that you have the strength and courage to recognize that you
are going through a difficult time and need help. Read more
about what teens who've talked with a counselor or met with a
support group have to say in
Finding Support.
"My grades were slipping. I wasn't
that great a student before my
sister got cancer. Once she got really
sick I stopped caring about school.
My art teacher noticed that my
drawings were different. She talked
with me and helped me get an
appointment with the guidance
counselor. I feel like a weight's been
lifted off my shoulders. I still worry
about my sister, but am doing better
in school now."
- Ray, age 16
|
Back to Top
You and Your Friends
"Before my big brother Trevor got
cancer, my three best friends
were my life. I didn't go anywhere
without them. I was never really
home. Things are different now.
I still see my friends, but I want to
hang out with Trevor a lot more
now. I definitely don't take him
for granted anymore. My friends
keep on going like nothing has
changed. And for them - nothing
has."
- Taylor, age 16
Your friends are important to
you, and you're important to
them. In the past, you could
tell them everything. Now
that your brother or sister
has cancer, it may seem like
lots is changing - even your
friendships. Here are some
things to think about:
Some friends may not
know what to say.
- It's hard for some
people to know what to
say. They may be afraid
of upsetting you. Try
to be gentle with friends who
don't ask how you're doing or who
don't talk about your brother's
or sister's cancer.
- You may need to
take the first step.
- Try saying
something
like this:
Some friends may ask
tough questions.
"Sometimes it's hard talking
about everything that's
going on. If this was
happening to one of my
friends, I probably wouldn't
know what to say to them,
either. It just makes me
appreciate even more the
friends who have called or
stopped by to hang out."
- Justin, age 16
- It may be hard to
answer questions
about what you and
your family are
going through.
You may want to
try to help your
friends understand
what's going on.
Or sometimes you
may not feel like
talking at all.
- Try saying
something
like this:
- If you don't
feel like
talking,
try saying
something
like this:
|
|
Your friends have
their own lives.
" People asked me questions all
the time. They'd say things like,
'I heard Molly isn't coming back
to school this year' or 'I heard
your mom was having a
breakdown.' When I told them
the truth, they didn't believe
me. And they'd ask dumb
questions like, 'Can Molly walk?
Can she write?' They didn't
know what was going on, and I
didn't know how to answer them.
I got sick of it."
- John, age 14
- It may feel like your
friends don't care
anymore. It might
seem as though
their lives are
moving on and
yours is not. It can
be hard to watch
them get together
with others or do
things without you.
They aren't facing
the situation you
are right now, so it
may be hard for
them to relate.
- You might want to try saying something like this:
"I get the feeling my
friends want me to just
'get over it' and go
back to how life was
before we found out my
sister has cancer. But
I wish they understo
od
that sometimes I just
don't feel like doing
what they're doing
or talking about what
they're talking about.
I really want to spend
time with my sister."
- Max, age 15
"Now that my brother lost his har and is so skinny,
I don't want my friends to come over anymore. I don't want them to see
how Tim looks. Besides, it's not easy to laugh and play at home when
he's so sick."
- Caroline, age 14
"My friends have been
great. They love Emma
like she was their own
sister. It helps to know
that they care."
- Angie, age 13
Dealing With Embarrassment |
It may be hard to talk with your friends. You may feel
embarrassed that your brother or sister has cancer, or that now
your family is different. You may not want to tell anyone about it.
But when someone in your family is sick,
you really need friends you can talk with.
|
Having Fun and Making New Friends |
Old friends:
Even though you may have a lot on your mind, you can still get
together with your friends and have a good time. If you can't
leave home as much, ask if your friends can come over. Make time
to relax. It's both good and important for you.
Make a list of
fun things you and your friends like to do together.
Then do them!
|
New friends:
A lot is happening to you right now. Sometimes old friends move
on. You may not have as much in common as you used to. The
good news is that you may make new friends through this
experience. Kids who used to just pass you in the halls may now
ask you how you are doing. Kids who you used to be friends with
may become close friends again. Be open to new friendships.
Going to
support groups
at the hospital or at school is a good
way to meet new friends. Support groups can help connect you
with other kids who can relate to you - because they're going
through some of the same things that you are.
Dealing With Hurtful Remarks |
Unfortunately, some kids may say mean things. Others speak
before they think and before they get the facts. No matter the
reason, it can hurt when kids make jokes or say hurtful things
about you, cancer, or your brother or sister.
What can you do?
- Ignore the comment.
- Say, "Hey, my brother/sister has cancer. It's not funny. How
would you feel if it were your brother/sister?"
- Being bullied? Go to your teacher, principal, or guidance
counselor right away.
|
Back to Top
Finding Support
"Before I went to a
support group I felt like
my sister's cancer was
just something that I had
to deal with on my own.
I thought it would be dumb
and depressing to talk
with others who were going
through the same thing as
me - but it's helped a lot!
I would tell other kids to
find a support group for
sure. Check out more than
one if you don't like the
first one you go to."
- Devon, age 15
Don't let being afraid
of the way you feel
keep you from talking
to your parents, a
counselor, or kids in a
support group.
For many people,
starting to talk is
difficult. Some teens
don't have good
relationships with their
parents. Others are too
embarrassed to talk about
personal things. It can
also just be hard to make
the time to talk, with all
that is going on. But you
and your parents really
can help each other.
TiP: Don't be shy about asking for help. |
You may think: "I can solve all my own problems."
However, when faced with tough situations, both
teens and adults need support from others!
|
Prepare before you talk.
Step 1 |
Step 2 |
Think about what
you want to say and
about some solutions
to the problem. |
Think about how
your parents might react.
How will you
respond to them? |
Find a good time and place.
Step 1 |
Step 2 |
Find a private place,
whether it's your room
or the front steps. Or
maybe you can talk while
taking a walk or
shooting hoops. |
Ask your parents
if they have a
few minutes to talk. |
Take things slowly.
Step 1 |
Step 2 |
Don't expect to solve
everything right away.
Difficult problems
often don't have
simple solutions. |
Work together
to find a way through
these challenges.
Some conversations
will go better
than others. |
Keep it up.
Step 1 |
Step 2 |
Don't think you have to
have just one big
conversation.
Have lots of
small ones. |
Make time
to talk a little each day
if you can, even if it's
just for a
few minutes. |
Sometimes talking to friends and your parents is not enough.
When you are having a hard time, it can be helpful to talk to a
counselor. Friends Brice and Nick talk about what is happening in
Brice's home:
"It took a few visits, but then
I got to know and trust my
counselor. She really listened
to me and was like a coach
who helped me learn new skills
and see new ways of looking
at things. I grew a lot."
- Samantha, age 15
Remember - going to a
counselor means you have
the courage to recognize
that you're going through
a tough time and need
some help. Simply put:
talking to a counselor
can help you feel better.
Counselors are specially
trained to help you sort
out your feelings, gain new skills to deal with
what's going on, and find solutions that work for you. Teens
who've talked with a counselor say it helped to talk to someone
outside their circle
of friends and
family who didn't
take sides, who
they could trust.
Others say they
learned a lot
about themselves
and felt better
able to face
life's
challenges.
"I was having a really hard time dealing
with my sister's cancer. But I tried to be
'perfect' and pretend that everything was
okay. I didn't want to stress my parents
out even more. One day my aunt said it
might help to talk with a counselor - even
if it seemed like I had it all together.
I was nervous at first, but I went. The
counselor made me feel like I could tell her
anything - and I finally opened up about
how I was really feeling. It felt great to
just have someone focus on me and what
I was going through."
- Jen, age 16
There are many ways to find a counselor. Here are some
suggestions to get you started:
- Talk to your parents or someone else that you trust. Let them
know you would like help to get through this difficult time.
Tell them that you would like to talk to a counselor. Ask for
help making appointments and getting to visits. Sometimes
you can even bring a friend.
- Ask a nurse or social worker at the hospital if they can give
you the name of someone you can talk to.
- Ask your guidance counselor or school nurse if you can talk
to him or her.
A good outlet for
connecting with teens
that are going through
the same thing that you
are is a support group.
Some groups meet in
person; others meet
online. Some groups go
out and do activities
together. At first this
may not sound like
something you want to do. Other teens have thought the same
thing - until they went to a meeting. They were surprised that so
many other kids felt the same way they did and had advice that
really seems to work. Your parents or another trusted adult can
help you find a support group.
Back to Top
After Treatment
"My sister Dana had to go to a
cancer treatment center 6 hours
away. I only got to see her two
times. We talked on the phone,
but it wasn't the same. My
sisters and I sent photos and
letters so she knew we were
thinking about her. We're glad
to have Mom and Dana back
home now."
- Kyle, age 13
When your brother or
sister has finally
completed treatment,
you and your family may
feel a
whole range of
emotions. Part of you is
glad it is over. Another
part of you may miss the
freedom or new
responsibilities you had
while your parent was
busy taking care of your
sick brother or sister.
Your brother or sister
may still look sick and be weaker than you expected. You may be
afraid the cancer will come back. You may be looking to find
more meaning in your life now. All these feelings are normal.
Things may not go back to exactly how they were before cancer
came into your lives. Getting back to your "old life" may take a
long time - and it may not happen as you expect.
Here's what others have said about life after treatment. Do any
of these kids sound like you?
Neil talks about the "new normal":
"I watched my younger brothers when Alex
was away getting treatment. My stepdad
counted on me since he was working and
Mom was at the hospital with Alex all
the time. Now that Alex is home, I'm
back to being just one of the kids. Alex is
getting all the attention - even from my little brothers
who used to look up to me all the time. My stepdad says
I'll get used to being a kid again. But right now it
doesn't feel that way."
- Neil, age 16
Ross appreciates life more:
"It used to be all about having the
latest stuff. If one of my friends
got a new skateboard or jacket,
I had to have it, too. After
Jackie got sick, I realized that
it was just that - stuff.
Now there are more
important things in life -
like my sister and my family.
When someone you care about is really sick, you
find out what really matters."
- Ross, age 15
Tanya is glad to have her sister back home:
"Before my sister Amy got sick, we fought all the time.
If she wore one of my sweaters, I was on her. It
bugged me when she followed me around, especially
when my friends were over. And if she got into my
stuff - it was war. But after Amy got
cancer things just didn't matter
anymore. I was like - 'take my sweater
Ames - keep it, it's yours.' I realized how
much I would miss her if anything
happened to her."
- Tanya, age 15
Write down what life after treatment feels like for you and
your family:
If treatment doesn't help your brother or sister, you and your
family will face even more challenges. Hearing that your sibling
might die is very difficult. You may feel many of the same
emotions you felt when you first learned that your brother or
sister had cancer.
No booklet can give you all the answers or tell you exactly how
you will feel. But when the future is so uncertain, teens say that
it helps to:
- Make the most of the time you have.
Do special things as a family. At home, make time for your
brother or sister. Call and visit as much as you can if they are
in the hospital. Write notes and draw pictures. Say "I love
you" often. If possible, try to have some special times
together. If you have not gotten along in the past, you may
want to let your brother or sister know you love them.
- Stay on track.
When people get bad news, they often feel like they're living
outside of themselves - that life is moving along without
them. That's why it's important to keep a schedule and stay
connected. Stay involved in school. Be with friends. And let
yourself take breaks from it all when you need to.
- Have hope.
Never stop believing in tomorrow, and don't be too hard on
yourself. There is more good than bad in this world - even
though you might not feel that way right now.
- Get help when you feel alone.
Make sure you find people who can help you. In addition to
your family, it may help to talk to a social worker, counselor,
or people in a support group. It's important to let your
feelings out.
Do you want more support
and guidance? |
Many cancer organizations can help you during this
very difficult time in your life. Turn to
Learning More On Your Own for information
about some of these organizations.
|
"We all huddled in my mom's bed the
night we found out that Gracie's
treatment wasn't working anymore.
Gracie was so wise. Even though she
was only 10 years old, she was trying
to comfort us and tell us it would all be
okay. That made us want to cry
harder - but something inside said to be
brave for Gracie. Now, we look at
photos and talk about Gracie. I still
don't know how life without my little
sister will look. I just try to take it
one day at a time."
- Gail, age 19
You'll always have memories.
Your brother or sister will always be part of your life. Hold on to
your memories of the good times. It's okay to think about
something funny that your brother or sister did or said. By
laughing and smiling you are bringing back just a little of what
was so special about them.
The pain will lessen with time.
At first the pain may be so strong that you might wonder whether
you will ever feel happy again. Time has a way of healing. Not
being sad every day doesn't mean that you have forgotten. It just
means that you're starting to heal.
Everyone grieves in his or her own way.
Some teens grieve for their brother's or sister's death by crying.
Others get quiet and spend time by themselves. Some find that
they need to be around friends and talk. Others get very angry.
In any case, most people finds it helps to keep a regular routine.
There is no right or wrong way to grieve. It's okay to deal with
loss at your own pace.
Your sibling would want you to be happy.
Stay open to new experiences. Make small changes that give your
life new meaning. Write about your thoughts and about this
experience. Don't worry about what to say, just write.
Life will change.
Life won't be the same as before, but it can be rich and full again.
Keep believing this.
Back to Top
The Road Ahead
Christine shares her story:
"My brother has been in remission for two years now.
Things were pretty bad at first. Then after a while, things
sort of settled down and got back to the way they were before.
I think Rob's cancer brought us all closer together. I get
along better with him and my sister and even with my older
brother now. I'm closer to Mom and Dad. And I think we
all grew up a lot while he was sick."
- Christine, age 15
Here's what Sam has to say:
"Watching my little brother play with his cars one
morning made me so sad. He loves those things.
He looked up and told me if he dies I can have all
his cars. Then he just went on playing. I felt a huge
lump in my throat. He's an amazing little kid."
- Sam, age 14
It can be hard to stay calm when you aren't sure what the future
holds. You may be thinking - will my brother or sister live? Will
the cancer come back? Will life ever be the same? Will I laugh
again? Enjoy being with friends again?
While no one can know the future, there are things you can do to
make your life a little easier:
- Keep talking and pulling together as a family.
You may find that cancer has drawn you closer together and
made you appreciate each other more.
- Discover your own needs. Don't let others tell you how
you should feel. Allow yourself to cope at your own pace and
in your own way.
- Remember that you're growing as a person. Many teens
say that having a brother or sister with cancer has made them
more sympathetic, more responsible, and stronger.
- Keep in mind that you aren't alone. Right now you may
feel lonelier than you ever have in your life. But you are not
alone. Family members, friends, neighbors, support groups,
and counselors are there to lend a helping hand, listen to
you, and give you good advice. Accept their help; you
deserve it.
- Appreciate each day. Many teens who have a brother or
sister with cancer say that they learned to see the world more
clearly. In time you may come to appreciate things you may
have overlooked in the past.
Maybe you have noticed that little things seem to have more
meaning for you these days. Take some time to write these
thoughts down, even if they seem small:
Unfortunately, no booklet or person can tell you how everything
is going to work out. Cancer is tough, and your life may never be
quite the same. But in the end, you will get through it. Why?
You're strong. And you are capable - even if you don't always feel
that way.
It's great that you want
to learn more! |
Keep in mind that cancer treatments are
getting better all the time. Make sure
that what you read or see is up to date
and accurate. Talk with your parents or
another trusted adult about what you
find. Share the articles or books you've
found with them. Ask them any
questions you may have.
|
Back to Top
Learning More on Your Own
Your school or public library
Ask the librarian to help you find the information or support that
you're looking for in books, magazines, videos, or on the
Internet.
The Internet
Use an Internet search engine and type in general words like
"sibling" and "cancer" together to get started. Keep in mind that
the Internet has a lot of good information. It also has a lot of
poor information and false promises, so you may want to check
with your parent or another trusted adult about what you find.
Your sibling's hospital or clinic
Visit the patient education office at your sibling's hospital, if
there is one. Or, ask if you can go with your brother or sister
during their visit to the doctor to learn more.
Here are some places to contact for help. You can call them or
visit their Web site for more information.
National Cancer Institute (NCI)
Cancer Information Service (CIS)
1-800-4-CANCER (1-800-422-6237)
www.cancer.gov
NCI offers accurate, up-to-date information on cancer for you and your
family. Call the CIS to talk to an information specialist who can answer
questions you or someone in your family might have. Or go to LiveHelp
on NCI's Website to chat online with an information specialist. NCI can
also help connect you with a support organization in your area. NCI
offers many materials in both English and Spanish. People who are deaf
may call a special TTY line at 1-800-332-8615.
American Camp Association
1-800-428-2267
www.acacamps.org
The American Camp Association can help you find camps that are
specifically for kids who have a brother or sister with cancer.
American Cancer Society (ACS)
1-800-ACS-2345 (1-800-227-2345)
www.cancer.org
By calling ACS, you can talk to a cancer information specialist. You can
call 24 hours a day to get your questions answered. The specialist may
help you find information and other resources.
CancerCare
1-800-813-HOPE (1-800-813-4673)
www.cancercare.org
CancerCare offers free information and support by telephone and online
to anyone affected by cancer. Visit their online support group for teens
who have a brother or sister with cancer.
Candlelighters Childhood Cancer Foundation
1-800-366-CCCF (1-800-366-2223)
www.candlelighters.org
Candlelighters Childhood Cancer Foundation provides support,
education and advocacy for children and adolescents with cancer,
survivors of childhood/adolescent cancer, their families and the
professionals who care for them.
Gilda's Club
1-800-GILDA-4-U (1-800-445-3248)
www.gildasclub.org
Gilda's Club provides a place for people with cancer and their families
and friends to join with others to build social and emotional support.
They offer support groups, workshops, and social activities for people
affected by cancer. Call to see whether there is a location near you.
Make-A-Wish Foundation
1-800-722-WISH (1-800-722-9474)
www.wish.org
Make-A-Wish grants wishes to kids who have life-threatening medical
conditions. Your parents, your brother or sister with cancer, or their doctor
can call Make-A-Wish to see whether your brother or sister can qualify.
SuperSibs!
1-866-444-SIBS (1-866-444-7427)
www.supersibs.org
SuperSibs! is a national non-profit organization that provides free
services to brothers and sisters of children with cancer. SuperSibs!
helps children and teens redefine the "cancer sibling" experience by
providing them with ongoing recognition and support.
The Wellness Community
1-888-793-WELL (1-888-793-9355)
www.thewellnesscommunity.org
The Wellness Community offers support, education, and hope to people
with cancer and their loved ones. Call to find out whether there is a
location near you.
Back to Top
Appendix A: Monitoring Tests
TEST |
PURPOSE |
PROCEDURE (What Happens) |
Biopsy |
Used to find out whether a tumor or abnormality is
cancer. Benign means it is not cancer. Malignant
means that it is cancer. |
A doctor removes a sample from a person using one of two ways: with a
long needle (needle biopsy) or by making a small cut (surgical biopsy). |
Blood test |
Checks the blood to see whether the balance of the cells
and chemicals is normal |
A nurse or technician inserts a needle into a vein, usually in the arm. Then
he or she draws blood. |
Bone marrow
aspiration |
Collects a small sample of cells from inside a bone to be
examined under a microscope |
A needle is used to remove a small sample of tissue from a bone (usually
the hip bone). |
CAT scan or
CT scan
(Computerized
axial tomography) |
Uses
x-rays and a computer to produce threedimensional
(3-D) images of the inside of the body |
The patient lies flat on a table, which moves through a large tube while a
series of x-rays is taken. |
MRI
(Magnetic
resonance
imaging) |
Uses radio and magnetic waves to make images of
organs and other tissues inside the body |
The patient lies flat on a table, which moves through a large tube while an
MRI machine scans the body for several minutes. |
PET scan
(Positron
emission
tomography) |
Uses computerized pictures of areas inside the body to
find cancer cells |
The patient gets an injection and then a machine takes computerized
pictures of areas inside the body. |
Spinal tap
(Lumbar
puncture) |
Collects a sample of the fluid inside the spine to be
examined under a microscope |
A needle is used to remove fluid from the spine in the lower back. |
Ultrasound
(Ultrasonography) |
Uses high-frequency sound waves to make images of
internal organs and other tissues inside the body |
A technician moves a small handheld device over an area on the
patient's body. An image appears on the computer screen. |
X-ray |
Takes a picture of the inside of the body using highenergy
waves |
The patient is placed in front of the x-ray machine or lies on a table. |
Back to Top
Appendix B: Cancer Team Members
TEAM MEMBER |
WHAT THEY DO |
Nurse |
A health professional trained to care for people
who are ill or disabled |
Nutritionist/
dietitian |
A health professional with special training in
nutrition who can help with dietary choices |
Oncologist |
A doctor who specializes in treating people with
cancer. Some oncologists specialize in certain
types of cancer or certain types of cancer
treatment. |
Patient educator |
Educates patients and families about illness |
Pharmacist |
Dispenses medicines for patients |
Physical therapist |
Teaches exercises and physical activities that
help patients gain more muscle strength and
movement |
Psychiatrist |
A doctor who treats mental health problems,
including depression, with medicine and talk
therapy |
Psychologist |
Talks with patients and their families about
emotional and personal matters and helps them
make decisions, but does not write prescriptions
for medicines |
Radiologist |
A doctor who looks at x-rays and other images of
the body |
Religious or
spiritual leader |
Addresses the spiritual and emotional health of
patients and their families. This can be a chaplain,
minister, priest, rabbi, imam, or youth group leader. |
Social worker |
Talks with people and their families about
emotional or physical needs and helps them find
support services |
Surgeon |
A doctor who removes or repairs a part of the
body by operating on the patient |
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Acknowledgments
We would like to thank the many teens, scientists, and health
professionals who assisted with the development and review of
this publication.
Back to Top
|