National Cancer Institute
U.S. DEPARTMENT
OF HEALTH AND
HUMAN SERVICES
National Institutesof HealthChildren with Cancer
A Guide for ParentsbChildren with Cancer: A Guide for Parents
Introduction  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  . 1

DIAGNOSIS

Types of Childhood Cancer  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  . 2Diagnosing and Staging Cancer  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  . 4Talking With Your Child  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  . 8

TREATMENT

Hospitals That Specialize in Treating Children With Cancer  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  . 14
Clinical Trials  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  . 23
Cancer Treatments and Side Effects  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  . 30
Common Health Problems  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  . 45

Finding Ways to Cope and Stay Strong  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  . 52

SUPPORT

Helping Your Child to Cope  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  . 55
Helping Brothers and Sisters  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  . 60
Getting Organized .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  . 63

LIFE AFTER

Survivorship and Follow-up Care  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  . 66

RESOURCES

Practices That Help Children: Integrative Medicine Approaches  .  .  .  .  .  .  .  .  .  .  .  .  .  .  . 76

If Treatments Aren’t Working  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  . 72
Looking Forward  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  . 75

Medical Tests and Procedures  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  . 79i

Acknowledgments
We would like to thank the many pediatric oncologists, nurses, social workers, dieticians,
and other health care professionals who contributed to the development of this guide. We areespecially grateful to the parents of children with cancer who shared their experiences andinsights in order to help others.
Please note that for easy reading, we alternate between “he” and “she” to refer to a childwith cancer.

iiIntroduction“When we first learned Lilly had leukemia, wewalked around in a daze for weeks and barely
slept. After the initial shock, we decided tolearn all we could about this type of cancer.
We also joined a support group at our hospital.
Lilly is a fighter—it has been 5 years now andshe is cancer free.”Being told that your child has cancer is extremely difficult. Many parents say they felt
overwhelmed and confused in the first days and weeks after their child’s diagnosis. This guidehas both medical information and coping advice that can help your child and your family.
Keep in mind:●● You are not alone . Your child’s treatment team has many specialists who will care for thephysical and emotional needs of your child. They will also help support your family during thisdifficult time.
●● More children than ever before survive childhood cancer . Most parents have good reason to be

hopeful that their child will get better.
●● Knowledge is power . Many people and resources are available to help you learn about the typeof cancer your child has, how it’s treated, and what to expect.
This guide aims to give parents practical support that can help you find a doctor, talk with yourchild, help your family to cope, organize medical and insurance information, and learn about
additional resources. It also includes information to help you learn more about specific typesof childhood cancer, tests and procedures, treatments and clinical trials, health issues during
treatment, steps to take if treatment isn’t working, and survivorship.
This guide can also be viewed online or printed.

1

Types of Childhood Cancer“Learn about the exact type of cancer your child has
and how it’s treated. Some or even much of what

you have heard about cancer will not apply to yourchild. We felt better when we knew how treatment

could help our child.”

This section provides general information about childhood cancer. Here are some points toconsider as you start to learn more:

Cancer is a group of many related diseases, not one disease . The word “cancer” is used to describea group of diseases in which abnormal cells divide without control, invade nearby tissues, andspread to other parts of the body through the blood and lymph systems.

Cancers in children are different from cancers in adults . The parts of the body in which cancer
occurs most often are different for children and adults. The most common childhood cancers
are leukemia, brain and other central nervous system
tumors, and lymphoma. Together, these cancers accountfor more than half of all cancers diagnosed in children
but only a small percentage of the cancers diagnosed
Normal cells growin adults.

More about cancer

The causes of childhood cancer are not well understood .
Although a small number of cases of childhood cancer
are due to genetic abnormalities, the causes of mostchildhood cancers are unknown.

Children of all ages, races, and economic backgrounds
get cancer .
More children survive cancer now than ever before .
New and better treatments help many children withcancer. Today, more than 80 percent of children andadolescents (under the age of 20) who are diagnosed
with cancer survive for at least 5 years after theirdiagnosis. However, survival rates for some childhood
cancers are still low. Much of the improvement inchildhood cancer survival rates is due to clinical
trials that have taken place over the past four decades.

Teams of specialists treat children with cancer . These teams
are most often found at university or children’s hospitals
that are members of the Children’s Oncology Group.

2

1-800-4-CANCER (1-800-422-6237) • www.cancer.gov

and divide in anorderly process. The
body makes morecells only when it
Normal cells
needs them. Whennormal cells grow old or get damaged,
they die, and new normal cells taketheir place.
Abnormal (cancer)
cells grow and divide
in an uncontrolled
fashion. For example,
new cells form whenAbnormal cells
the body doesn’t
need them, and old or damaged cells
don’t die when they should. Cancer cells
can invade and damage nearby tissues
and spread to other parts of the body.
The spread of cancer from one part ofthe body to another is called metastasis.

Childhood cancers
The most common childhood cancers include:

Brain cancer●● Brain and spinal cord tumors begin in the tissues of the brain and spinal cord. The brain andspinal cord make up the central nervous system (CNS).

Germ cell tumors often begin in the testicles or ovaries, although they can form almost●● central nervous system germ cell tumors

Leukemia starts in the blood-forming tissue of the bone marrow. Types of leukemia include:●● acute lymphoblastic leukemia (ALL)●● acute myeloid leukemia (AML)DIAGNOSIS

anywhere in the body. These types of tumors include:●● extracranial germ cell tumors (tumors form outside the brain)

Lymphoma starts in the lymphatic system, which is part of the body’s immune system. There areseveral types:●● Hodgkin lymphoma●● non-Hodgkin lymphoma

Neuroblastoma forms in nerve tissue in the neck, spinal cord, or adrenal gland.
Sarcoma is cancer that forms in the bone, muscle, or soft tissues. There are several types:●● Ewing sarcoma forms in the bone or soft tissues●● osteosarcoma forms in the bone●● soft tissue sarcoma forms in muscle, fat, fibrous tissue, blood vessels, or other supporting

tissues of the body●● rhabdomyosarcoma is the most common type of soft tissue sarcoma in children, it forms in themuscle tissues

Wilms tumor and other childhood kidney tumors●● Wilms tumor forms in the kidney.

More types of childhood cancer
For detailed information about these and other childhood cancers see our Pediatric Cancer
Treatment Summaries (PDQ®). Each summary includes information about signs of specifictypes of cancer, tests that may be used to make a diagnosis, and treatment choices.

Related resources●● Alphabetical List of Pediatric Cancer Treatment Summaries (PDQ®)●● Childhood Cancers

3Diagnosing and Staging Cancer
This section explains how cancer is diagnosed in children. It will help you learn what tests areused to diagnose cancer and how staging systems, risk groups, and grades may be used to plan
treatment for your child and to make a prognosis.

Common symptoms
The early symptoms of childhood cancer are often similar to ones that are commonly seen inother illnesses. These symptoms may include fever, feeling tired, swollen glands, or weight loss.
Others, such as bruising or tender joints or bones, may lead a parent to suspect an injury. Whenthese signs and symptoms last or are severe, the doctor may order tests to check for cancer orother illnesses.

Tests and procedures
The following tests and procedures are used to diagnose cancer in children. The type of test done
depends on your child’s symptoms, age, medical history, and the type of cancer doctors think it
may be.
●● A physical examination and blood tests●● Scans are imaging tests that make pictures of areas inside the body. Types of scans include

CT scan, MRI, PET scan, x-ray, and ultrasound. A radiologist is a doctor who reviews the scans
and sends a report of the findings to your child’s doctor.
●● A biopsy is a procedure in which samples of cells or tissue are removed and then checked tofind out if cancer cells are present. When possible, biopsies should be done at a hospital thatspecializes in diagnosing cancer in children. A pathologist will study the cells or tissue samples
taken during the biopsy and write a pathology report . This report describes what the cells or
tissues look like when examined with a microscope and includes the diagnosis.
Learn more about these tests and procedures in the Medical Tests and Procedures section on
page 79.

“Before the biopsy, my daughter and I learned
what was going to happen. We went to alarge children’s hospital that had expertise indiagnosing and treating children with cancer.”

41-800-4-CANCER (1-800-422-6237) • www.cancer.gov

Questions to ask before a test or procedure●● Which test(s) or procedure(s) does my child need? What will the results tell us?

●● Where should my child have this test or procedure done?

●● What does my child need to do to get ready for the test or procedure?

●● What happens during the test or procedure? Will my child be awake?

DIAGNOSIS●● How long will the test or procedure take? When will we know the results?

●● Will my child feel discomfort or pain? Will medicine be given to help my child relax or sleep?

●● What are the risks of this test or procedure?

Questions to ask when you receive test results●● What did the test or procedure find?

●● Will you explain what the pathology report says?

●● What is my child’s diagnosis? What type of cancer does my child have?

●● What is the extent or severity (risk group, grade, or stage) of the cancer?

●● Will more tests or procedures be needed? What will these tests or procedures tell us?

Will they be painful?
●● Who can give us a second opinion about the pathology report?

5

Risk group, grade, or stage: Planning treatment“At first, everything was new and confusing.
I was overwhelmed. Now I understandmore, and if I don’t understand something– I ask until I do.”Depending on the type of cancer that your child has – the doctor will describe the cancer in termsof its stage, grade, or risk group. These systems, explained below, are used to describe how severe
different types of cancer are and to plan the best treatment for each child. Get copies of all test
results and reports used to make a diagnosis – as well as a written copy of your child’s diagnosis.
●● Risk group: For many childhood cancers, including leukemias, patients are assigned to a risk

group (low, intermediate, or high) based on the child’s age, clinical features of the disease, andthe results of laboratory tests. For example, leukemia risk groups are based on the number ofwhite blood cells, changes in chromosomes, and whether the leukemia has spread to the brain
and spinal cord. Patients with lower-risk disease are more likely to have a good outcome andneed less aggressive treatment than patients with high-risk disease.
●● Grade: Other cancers, such as brain tumors, are often grouped and treated based on what cancer

cells look like when examined with a microscope. Low-grade (also called well-differentiated)tumor cells look nearly normal under a microscope, grow slowly, and are less likely to spreadthroughout the body than high-grade (also called undifferentiated or poorly differentiated)cancer cells.
●● Stage: Treatment for solid tumors (such as Wilms tumor, for example) may also be based on thestage of the cancer. Staging systems use numbers and letters to describe the extent and severityof the cancer.
■● Numbers: In stage I (also called stage 1) the tumor is usually small and has not yet spread toother parts of the body. In stage IV, (also called stage 4) the cancer is more advanced and hasoften spread (metastasized) from the place where it started to other organs or tissues in thebody, such as to the bones.
■● Letters: The

TNM staging system uses the letters T, N, and M to describe the stage. The letter

T describes the size of the tumor, N describes whether or not cancer has spread to nearby
lymph nodes, and M describes whether or not metastasis (the spread of cancer to other partsof the body) has occurred.

6

1-800-4-CANCER (1-800-422-6237) • www.cancer.gov

Second opinion
Some parents decide to get a second opinion to confirm their child’s diagnosis. Even highly
experienced doctors may have different opinions. If you choose to get a second opinion, talkwith the first doctor. You will need to get information such as slides, samples, or reports from thehospital where the biopsy was done to give to the second doctor.

Prognosis
A prognosis is the chance that the cancer can be treated successfully and that your child will getbetter. It is based on information collected over many years from large numbers of people who
were diagnosed with the same type of cancer. Factors that may affect your child’s prognosis include
the type of cancer your child has, how advanced the cancer is, your child’s age, and how your child
responds to treatment.

DIAGNOSIS

It’s common to get a second opinion and most doctors welcome another doctor’s views. Somehealth care plans require a second opinion. Other health care plans will pay for a second opinion
if you ask for one. If your plan does not cover a second opinion, you can still get one if you arewilling to cover the cost.

As you talk with your child’s doctor about your child’s prognosis, keep in mind that:●● Survival statistics may be based on all patients with a specific type of cancer – or only some ofthem. One statistic that is commonly used in making a prognosis is the 5-year survival rate.
This rate is the percentage of people diagnosed with a specific type of cancer who are still alive
5 years after they were diagnosed.
●● Survival statistics use information collected from large groups of people who may have received

different types of treatment.
●● Since it takes several years to see the effect of newer and better treatments, these effects may

not be reflected in current survival statistics.
Because statistics are based on large groups of people, they cannot be used to predict exactly what
will happen to your child. Everyone is different. Treatments and how people respond to treatment
can differ greatly.

Related resources●● Cancer Staging●● Pathology Reports●● Tumor Grade●● Understanding Cancer Prognosis

7

Talking With Your Child“My son was old enough and smart enoughfor me to level with him about everything.
I learned as much as I could about thecancer he had, but mostly I did whatparents do best—I loved and was always
there for my child.”
This section has advice to help you talk with your child. Begin with the knowledge that you
know your child best. You know what makes your child laugh, and you know what upsets yourchild. Your child depends on you for helpful, accurate, and truthful information. Talk calmly anddirectly with your child during this frightening time.
Honesty builds trust. Tell your child about the illness and what to expect. This will help your childtrust you and the health care team. Children who are not told what is happening or why are often
fearful and may imagine the worst.
Work together with people on your child’s health care team, such as social workers and child life
specialists. Social workers are professionals who talk with people and their families about emotional
and physical needs and help to find them support services. Child life specialists are health care
professionals who are trained in the developmental and psychological needs of children and who
help children understand and cope with medical issues.

Information for children of different ages
Your knowledge and insights about your child, combined with your health care team’s expertise,
can help your child:●● learn about the cancer, how it will be treated, and what to expect during treatment●● manage and deal with painful treatments or procedures●● cope with feelings and get social support●● have some control over the situation●● know they are loved, supported, and surrounded by people who care about them

8

1-800-4-CANCER (1-800-422-6237) • www.cancer.gov

Comfort your baby by holding and gently touching her. Skin to skin contact
If your child isless than 1 year old is ideal. Bring familiar items from home, such as toys or a blanket. Familiar

sights and smells can help your baby feel more secure. Talk or sing to yourchild, since the sound of your voice is soothing. Try to keep up feeding andbedtime routines as much as possible.

If your child is
1 to 3 years old

Very young children understand things they can see and touch. They fear
being away from their parents and want to know if something will hurt.
Toddlers like to play, so find safe ways to let your child play. Toddlers also
like to start making choices, so let your child choose a sticker or a flavor of
medicine when possible. Prepare your child ahead of time if something will
hurt. Not doing so may cause your child to become fearful and anxious.

DIAGNOSIS“I found that just humming to my baby and gently rubbing
her feet kept her calm during blood draws.”“Toys in the playroom at the hospital kept Riley busy while we
waited to be seen by the doctor. We also brought a backpack
filled with some of his favorite toys and his blanket.”If your child is
3 to 5 years old

To help your child understand his treatment better, ask the doctor if he cantouch the models, machines, or supplies (tubes, bandages, or ports) aheadof time. If a test or treatment may hurt, prepare your child in advance. You
can also distract your child and try to take her mind away from the pain byreading a story or giving her a stuffed animal to hold.

“We found a picture book about the hospital. Jamie wanted us
to read it all the time. We still have the book, even though she’s
completed treatment.”

If your child is
6 to 12 years old

School-aged children understand that medicines and treatment help themget better. They are able to cooperate with treatment but want to knowwhat to expect. Children this age often have many questions, so be ready toanswer them or to find the answers together. Talk with your child’s doctor
or nurse for answers to difficult questions or situations. Relationships areimportant, so help your child to stay in touch with friends and family.

“John just turned 11, and he is really interested in how
treatment works. He’s always asking questions. He tells his big
brother not to worry—that he will be fine. His doctor says hewill make a great doctor one day!”9

If your child isa teenager

Teens often focus on how cancer changes their lives—their friendships,
their appearance, and their activities. They may be scared and angry
about how cancer has changed their life and isolated them from theirfriends. Friendships are very important at this age, so look for ways to help
your teen stay connected to friends through texting, e-mails, online video
chats, letters, pictures, and visits. Some teens use social media sites to stayconnected to friends.
Your teen may feel that cancer has taken a lot of her freedom and privacy
away. She may need to depend on you at a time when she is trying tobecome her own person. It will likely help to give your teen some of thespace and freedom she had before treatment and encourage independence.
Make sure your teen is included in treatment planning and other choices.
Some teens with cancer feel as if nothing bad could ever happen to them,and others have fears about death. Your teen may try to protect you andothers they love by holding in their feelings. Don’t assume you know what
your teen is thinking. Take time to observe and listen. Many people, teens
included, have trouble sharing their thoughts and feelings. Sometimes it
may be easier for your teen to confide in a friend or a member of the healthcare team than in you.

“Jackie is 14 and really social. She sees her friends between
chemo treatment cycles. They do normal teen stuff—watch
movies, play video games, and hang out. This weekend they
made a poster using photos they’ve taken and picturesfrom magazines. We put it up on her wall. It was goodto hear laughter coming from her bedroom again!”

Questions from parents
Although you want to be honest and helpful, you may not know what to say or when to say it.
Your child will learn a lot from your tone of voice and facial expressions, so stay calm when
you talk with your child. Work to be gentle, open, and honest. Being open and honest will allow
your child to trust you and feel comfortable confiding in you. Use the suggestions below to getstarted. You may also want to refer to the Information for children of different ages section on
page 8 to learn more.

“On days when I couldn’t be strong for myself,
I was strong for my child.”10

1-800-4-CANCER (1-800-422-6237) • www.cancer.gov

Many parents receive their child’s diagnosis from the doctor at the sametime that their child learns of it. However, if you choose to be the one totell your child, your child’s doctor or nurse can help you decide what tosay and how to answer your child’s questions.

When should mychild be told?

Your child should be told as soon as possible. This will help build trust
between you and your child. It does not mean that your child needs tohear everything all at once.

What should I tell
my child?

The information you share with your child depends on his age andwhat your child can understand. Children of all ages need clear, simple
information that makes sense to them. As much as possible, help
your child to know what to expect by using ideas and words that heunderstands. Tell your child how treatment will make him feel andwhen something will hurt. Explain that strong medicine and treatments
have helped other children. Explain that treatments may cause changes
in your child’s schedule, and how your child may feel.

How much should
I tell my child?

Help your child to understand the basic facts about the illness, thetreatment, and what to expect. It may be hard for many children toprocess too many details or information given too far in advance. Start
with small amounts of information that your child can understand. You
can share more information over time if it seems as if your child will beable to understand and cope with the information.

DIAGNOSISWho should tell
my child?

Encourage your child to come to you with questions. Use your child’squestions as a guide to understand what is on her mind. Children often
use their imaginations to make up answers to unanswered questions andmay fear the worst. Answering your child’s questions and having honest,
ongoing conversations can help your child. Telling untruths can cause
your child to distrust you or people on their health care team.

How might mychild react?

Each child is different. Some worry. Others get upset or become quiet,
afraid, or defiant. Some express their feelings in words, others in actions.
Some children regress to behaviors they had when they were younger.
These are normal reactions to changes in life as they know it. Theirschedule, the way they look and feel, and their friendships may all bechanging. Expect that some days will be rough, and others will beeasier. Tell, and find ways to show, your child that you will always be
there for her.

Children take cues from their parents, so being calm and hopeful can
What can I do tohelp my child cope? help your child. Show your love. Think about how your child and family
have handled difficult times in the past. Some children feel better after
talking. Others prefer to draw, write, play games, or listen to music.

11

Questions from children“Keep it honest. Keep it simple. Sounds easierthan it actually is, but if you focus on thesethings you and your child will be OK.”

Your child may wonder why he got sick and how long it will take to get better. If your childis older, he may have heard about cancer or had a grandparent who died from cancer. Many
children ask what will happen during treatment and how they will feel. Your child’s social
worker, child life specialist, nurse, and/or psychologist can help you come up with answers thatwill be most helpful to your child.

What is cancer?

Your child will understand her cancer by relating it to what she alreadyknows. So, begin by finding out what your child knows or may haveheard about cancer. Then help your child be less fearful and understandwhat is happening.
When talking about cancer with your child, start with simple words
and concepts. Young children may understand that they have a lump(tumor) that is making them sick or that their blood is not working
the way it should. Older children may find the explanation of cancer
cells in the Types of Childhood Cancer section on page 2 to be
helpful. Tell older children the exact type of cancer they have, suchas “leukemia” or “Ewing sarcoma,” for example. Use more medicalwords over time. For children of all ages, explain that cancer is notcontagious—it’s not an illness children catch from someone or they
can give to someone else.

Why did I get cancer? Some children think they did something bad or wrong to cause thecancer. Others wonder why they got sick. Tell your child that nothing
he—or anyone else—did caused the cancer, and that doctors areworking to learn more about what causes cancer in children.
You may tell your child: I don’t know. Not even doctors know
exactly why one child gets cancer and another doesn’t. We do knowthat you didn’t do anything wrong, you didn’t catch it from someone,
and you can’t give it to anyone.

121-800-4-CANCER (1-800-422-6237) • www.cancer.gov

Will I get better?

Being in the hospital or having many medical appointments can bescary for a child. Some children may know or have heard about aperson who has died from cancer. Your child may wonder if she will
get better.

How will I feel during Your child may wonder how he may feel during treatment. Children
with cancer often see others who have lost their hair or are very sick.
treatment?

Talk with your child’s nurse or social worker to learn how your child’s
treatment may affect how your child looks and feels.
You may tell your child: Even when two children have the same
type of cancer, what happens to one child may not happen to theother one. Your doctors and I will talk with you and explain what weknow and what to expect. We will all work together to help you feel as
good as possible during treatment.

DIAGNOSISYou may tell your child: Cancer is a serious illness, and yourdoctors and nurses are giving you treatments that have helped otherchildren. We are going to do whatever we can to help you get better.
Let’s talk with your doctor and nurse to learn more.

13

Hospitals That Specialize in TreatingChildren With Cancer“We found a doctor who specializes in treating
the type of cancer that our son has throughthe Children’s Oncology Group—a networkof hospitals with amazing childhood cancer

experts. Our son likes his doctor, and we trust

her. He’s completed treatment and is doing well.”After learning that your child has cancer, you will need to decide where to have your childtreated. Sometimes children who are diagnosed with cancer need to start treatment right away.
However, when possible, it’s often valuable to seek a second medical opinion. This section helps
you learn about hospitals that specialize in treating children with cancer, how to get a second
opinion, and tips for working with your child’s health care team.

Choosing where to have your child treated
Most children with cancer receive treatment at places that specialize in treating cancer inchildren—such as a children’s hospital, university medical center, or cancer center. Hospitals
that have experts in treating children with cancer are usually member institutions of theChildren’s Oncology Group (COG). COG is the world’s largest organization devoted to clinicalresearch to improve the care and treatment of children and adolescents with cancer.

Children’s Oncology Group (COG) member institutions:●● treat more than 90 percent of the children and adolescents who are diagnosed with cancer eachyear in the United States●● have more than 8,000 physicians, nurses, and other experts in childhood cancer who work at

more than 200 children’s hospitals, university medical centers, and cancer centers throughout
the United States and Canada, and at a growing number of international sites●● participate in clinical trials, which are research studies that help doctors to develop better

treatments for children with cancer
You can ask your child’s pediatrician or family doctor for a referral or view an online directory of
COG locations. Parents and/or health professionals can also call NCI’s Cancer Information Service(CIS) at 1-800-4-CANCER to find hospitals that specialize in treating children with cancer. You may
find a hospital that is a COG member institution in the city where you live, or you may choose
to travel, or even move for a short time, to another city while your child receives treatment.

14

1-800-4-CANCER (1-800-422-6237) • www.cancer.gov

Getting a second opinion“I’d tell parents to have their child treated at a
hospital that specializes in treating children withcancer—perhaps even the type of cancer theirchild has. Getting a second opinion helped us
make the best decision. We decided to travel to achildren’s hospital that’s far from our home andwe’re glad we did.”A second opinion is especially helpful when:●● the first opinion on the treatment plan comes from a doctor who doesn’t specialize in or treat

many children with the type of cancer that your child has

TREATMENT

After you talk with one doctor about your child’s diagnosis and treatment plan, you may choose
to get another doctor’s opinion. This is called getting a second opinion. Most doctors will supportand understand your interest in seeking a second opinion. Sometimes insurance companies
require a second opinion. Your insurance company can also tell you what steps to take in order to
get a second opinion.

●● there are complicated medical decisions that need to be made●● there are different treatment options to choose from●● your child has a rare cancer

The second opinion should come from a pediatric oncologist, preferably one who treats
children who have the type of cancer that your child has. This doctor will usually have themost experience with, and the most knowledge about, the latest treatments. For some types ofchildhood cancer, it may be important to seek a second opinion from a subspecialist, such as an
oncologic orthopedic surgeon.
If you choose to seek a second opinion, you will need to get important medical test results
and reports from the first doctor to share with the second doctor. The second doctor will
examine your child and review the pathology report, slides, and scans before giving treatment
recommendations. The second doctor may agree or disagree with the first doctor's opinion. If thesecond opinion differs from the first opinion, both doctors should explain why their proposed
approach is better and how it is supported by medical evidence, such as the results of clinical
trials for this type of cancer.
Having a pediatric oncologist or other subspecialist review your child’s case can ensure that all
aspects of care and treatment are considered. Often, the doctor who talks with you about thetreatment plan will first review and discuss your child’s case with other doctors at the hospital(this is called a tumor board review or a multidisciplinary opinion), so that the treatment planreflects a consensus of the best approach for your child from a team of doctors.

15

Places to go for help in finding a second opinion include:●● a hospital that is a member of the Children’s Oncology Group●● the Pediatric Oncology Branch at the NIH Clinical Center (1-877-624-4878)

Specialists who care for children with cancer“We got to know the people on our child’s healthcare team. These specialists worked together totreat our child. In the beginning, we wrote down
names and took pictures to help us keep track ofthem all. We also gave them a photo of our family.”
Many different specialists work together to treat children with cancer. Your child may see someof the specialists listed below. Use this list to keep track of names and contact information for thepeople on your child’s team.

Doctors who treat children with cancer include:
The attending physician is usually a pediatric hematologist or pediatric oncologist.
F● Pediatric hematologist: A doctor who treats cancers of the blood and related blood

disorders in children.
Name and contact information:
F● Pediatric oncologist: A doctor who treats children with cancer.

Name and contact information:

Other doctors your child may see include:
F● Neurologist: A doctor who diagnoses and treats problems of the nervous system.

Name and contact information:
F● Neuroradiologist: A doctor who specializes in creating and interpreting pictures of thenervous system.
Name and contact information:
F● Neurosurgeon: A doctor who specializes in surgery on the brain, spine, and other parts of

the nervous system.
Name and contact information:

16

1-800-4-CANCER (1-800-422-6237) • www.cancer.gov

F● Orthopedic surgeon: A doctor who specializes in diagnosing and treating injuries anddiseases of the musculoskeletal system. This includes the bones, joints, tendons, ligaments,and muscles.
Name and contact information:
F● Pain specialists: Experts who treat pain include anesthetists, neurologists, palliative caredoctors and nurses, pharmacists, and psychologists, among others.
Name and contact information:
F● Palliative care specialists: Specialists who provide palliative care include palliative

medicine doctors, social workers, nurses, chaplains, and child life specialists, among others.
Palliative care aims to prevent or treat as early as possible the symptoms of a disease, side
effects caused by treatment, and related social and spiritual problems.
Name and contact information:

tumors and other tumors of the nervous system in children.
Name and contact information:
F● Pediatric psychiatrist: A doctor who specializes in the prevention, diagnosis, and/or

treatment of emotional and behavioral disorders in children.
Name and contact information:

TREATMENTF● Pediatric neuro-oncologist: A doctor who specializes in diagnosing and treating brain

F● Pediatric psychologist: A specialist who talks with your child about feelings and emotions.

Name and contact information:
F● Radiation oncologist: A doctor who specializes in using radiation to treat cancer.

Name and contact information:
F● Radiologist: A doctor who creates and interprets pictures of areas inside the body.

Name and contact information:
F● Pediatric surgeon: A doctor who specializes in operating on children. There are many

subspecialty surgeons, such as orthopedic surgeons, for example.
Name and contact information:
F● Urologist: A doctor who specializes in diseases of the urinary organs in females and theurinary and sex organs in males.
Name and contact information:

17

Other specialists who help care for children with cancer include:
F● Child-life specialist: A health professional who is trained in the emotional anddevelopmental needs of children.
Name and contact information:
F● Education coordinator: A teacher at the hospital who helps your child with academic

work and may also coordinate school work with your child’s teachers.
Name and contact information:
F● Nurse practitioner (also called an advanced practice nurse): A registered nurse who

has additional education and training in how to diagnose and treat disease. Pediatric nurse
specialist: A registered nurse with an advanced degree in nursing who specializes in thecare of children. Case management nurse: A registered nurse with special training in how
to plan, manage, and evaluate all aspects of patient care, especially for patients who receive
treatment over a period of time.
Name and contact information:
F● Physical therapist: A health professional who helps your child to maintain and improvestrength, joint alignment, balance, and endurance.
Name and contact information:
F● Physician assistant: A health professional who is licensed to do certain medical procedures

under the guidance of a doctor. A physician assistant may take medical histories, do physicalexaminations, and give injections, for example.
Name and contact information:
F● Registered dietitian: A health professional with special training in the use of diet andnutrition who helps to improve the nutritional health of a patient.
Name and contact information:
F● Social worker: A professional trained to talk with people and their families about emotionalor physical needs, and to find them support services.
Name and contact information:
F● Spiritual leader, spiritual care worker, pastoral counselor, or religious leader: A

person who is trained to give spiritual advice and counseling.
Name and contact information:18

1-800-4-CANCER (1-800-422-6237) • www.cancer.gov

Questions to ask when choosing a hospital
About the hospital, doctor, and other members of the health care team●● Is this hospital a member of the Children’s Oncology Group (COG)?

●● How long have you been a board-certified pediatric oncologist?

●● Are you the doctor who will treat and care for my child? Do you specialize in treating the typeof cancer that my child has?
●● Who are the other specialists that will be on my child’s health care team?

To learn more about treatments for your child, you may refer to the list of Questions to
ask about clinical trials section on page 28 and the list of Questions to ask about yourchild’s cancer treatment section on page 32.

TREATMENT

About the treatment plan

About support services for your child●● What specialists and services are available to help my child both physically and emotionally?

●● How often will my child see these specialists?

●● What counseling and coping services are available?

●● What integrative medicine practices are offered? (See the Practices That Help Children

section on page 76 for more information.)●● What fertility preservation procedures do you have available or recommend?

●● What type of academic support would my child have access to at this hospital?

●● What activities and facilities (such as an activity room or computer room) are available?

19About services for your family●● What programs and specialists do you have available to help parents and siblings cope?

●● What are your visitor and overnight policies?

●● What food services do you offer?

●● Where do families stay?

●● Would it be possible to talk with other parents who have had a child treated at this hospital?

About practical and financial issues●● What types of insurance do you accept?

●● What costs are covered? What costs do we need to pay up front or out-of-pocket?

●● Do you offer counseling and support for financial and insurance-related issues?

Working with your child’s health care team
“We got to know our child’s doctor. She was so
open with us, took the time to explain things,
and encouraged our son to ask questions so heunderstood everything too. We all worked
together as a team, to help our son.”
You and the people on your child’s health care team will work together a great deal over the
coming months. These suggestions can help you and your child to establish strong and effective
relationships with the people on your child’s health care team.

20

1-800-4-CANCER (1-800-422-6237) • www.cancer.gov

Suggestions to consider as you work with your child’s health care team:●● Build a strong partnership . Give and expect to receive respect from the people on your child’s

health care team. Open and honest communication will also make it easier for you to ask
questions, discuss options, and feel confident that your child is in good hands.
●● Advocate for your child . You know your child best. When you notice that your child is having

a difficult time, ask for extra help and support.
●● Take advantage of the many specialists who can help your child . Your child’s health care teamhas expertise in helping children during treatment for cancer. Work with them to help yourchild learn about cancer, how it will be treated, prepare for tests, manage side effects, and cope.
●● If you get information online, make sure the source is credible . Although many parents lookfor information online, some are more comfortable getting information from the doctor
and feel overwhelmed or fearful about doing their own research. What is important is to get
accurate information that you can understand and use to make decisions to help your child.

■●

Get recommendations for websites, books, and videos. Share what you find with yourchild’s health care team to confirm these resources are relevant to your child.
Visit the hospital’s library or resource center. Meet with a librarian or health educator.

●● Make sure you understand important information . It can be overwhelming to take in andremember new medical information.
■●

■●

■●

■●

TREATMENT■●

Speak up when something is confusing or unclear, especially when decisions need tobe made.
Ask to see pictures or videos to help understand new medical information. Visuals areespecially appreciated by children as well.
Take notes or ask if you can record a conversation with the doctor so you can listen toit again later.
Go with a family member or friend when you talk with your child’s doctor. They cantake notes, ask questions, and help you to remember important information.

●● Keep your child’s pediatrician updated . Ask for updates to be sent to your child’s regularpediatrician.

21

Practical steps to take for doctor visits
Before (and between) visits:●● Prepare for each visit. Make notes to help you remember important information you want todiscuss with your child’s doctor. Use a notebook or computer to keep information organized
and in one place.
●● Write down questions and concerns as they arise. Make note of any changes you notice inyour child—both physical and emotional.
●● Bring your questions and notes with you to the doctor’s visit. Put the most importantquestions first on the list.

During the visit:●● Include your child in the conversation. Let your child talk and ask questions. If you or yourchild does not understand something, speak up.
●● Take notes or ask to record the visit, so you can remember important information.
●● Tell your child’s doctor about all medical and emotional changes you notice in your child.
●● Find out what urgent medical problems you should watch for. Know what problems can be

managed at home and which require urgent medical care in an emergency room.
●● Get the names and phone numbers of people on your child’s health care team. Make sure you

know who to call at all times, including nights and weekends.
●● If you still have more questions, ask to schedule another visit or a follow-up call.

After the visit:●● Call about any problems, concerns, or changes you notice between visits.
●● Continue to track (using a notebook or computer) test results, medicines, and treatments

your child receives.

Related resources●● Locations of Children’s Oncology Group Hospitals (COG)●● How to Find a Doctor or Treatment Facility●● Cancer in Children and Adolescents

22

1-800-4-CANCER (1-800-422-6237) • www.cancer.gov

Clinical Trials“Ask questions and learn about the best chance for curing
the type of cancer your child has. It might be a clinical
trial, or it might not be—but you won’t know unless
you ask. We decided that a new treatment being given
through a clinical trial was the best choice for our child.”

Many children with cancer have treatment options, including
standard medical care or treatment in a clinical trial .
appropriate and accepted for a specific disease.
●● Clinical trials (also called clinical studies) are a type of research study that test new medical

approaches in people. Some cancer clinical trials compare a new treatment, or a new way ofgiving a standard treatment, with the standard treatment to see if it works better or has fewerside effects. Others determine the best amount of a drug to give.

TREATMENT●● Standard medical care (also called standard of care) is treatment that experts agree is

It is important to learn about all of the treatment options available to your child . Most children
with cancer receive treatment through participating in a clinical trial. The high clinical trial
participation rate accounts for much of the progress in treating childhood cancers. In somecases, clinical trial results have led to treatments with fewer or reduced side effects. Other times
a clinical trial may help doctors learn about the best dose of a medicine. Once a new treatment
has proven safe and effective in a clinical trial, it may become the standard of care.

“I called 1-800-4-CANCER to get information aboutclinical trials that were open for the type of cancer
my child has. This helped us talk with our child’s
doctor to learn more.”

23

Commonly asked questions
What areclinical trials?

Clinical trials are a type of research study that test how well new medical
approaches work in people. Clinical trials can test new ways to prevent,detect, diagnose, or treat a disease. This section focuses on clinical trials oftreatments for children with cancer.

How can clinical
trials help
children withcancer?

Several benefits of taking part in a cancer treatment clinical trial include:●● being among the first to receive a promising new treatment that may

not be available outside of a clinical trial●● taking part in research that may help others who will need cancer

treatment in the future●● receiving high-quality care, including close monitoring, from a healthcare team that is skilled in the latest practices of caring for cancer patients

Are there possible Possible risks and/or inconveniences from taking part in a cancer
treatment clinical trial include:risks in taking
part in a clinical●● receiving a treatment that has unexpected side effects or may turn out
trial?
to be no better, or even worse, than the standard treatment●● being required to make more visits to the doctor for tests and check-ups

Who sponsors
and approvesclinical trials?

Many different organizations, including the National Cancer Institute (NCI),
drug companies, universities, and medical institutions, sponsor cancer
treatment clinical trials for children. Each clinical trial sponsor has procedures
for approving the clinical trials that it supports. For example, the approval
process for NCI-sponsored COG clinical trials includes review by childhood
cancer experts to ensure that the treatments are appropriate and that the
research questions are a high priority for the cancers being studied.
In addition to the sponsor’s review and approval procedures, a groupcalled an institutional review board (IRB) must also approve the detailed
plan (protocol) for every clinical trial, before it can begin. IRBs, which
include scientists, doctors, members of the clergy, and patient advocates,
make sure that clinical trials are well designed, ethical, and legal. These
review boards also monitor the safety and progress of the trials.

Who pays forthe cost of aclinical trial?

24

The two types of costs associated with a clinical trial are patient care costs
and research costs. Patient care costs are expenses that are part of normal
cancer care, such as doctors’ fees, routine laboratory tests, and hospital
stays, for example. These are usually covered by your insurance company.
Research-related costs are items such as the drug(s) being studied, laboratory
tests that are part of the research plan, and the research team’s time. The
clinical trial sponsor generally pays for these. Costs that may not be coveredby either the insurance company or the sponsor include expenses fortravel, hotel costs, and other related personal expenses, for example. Always
check with your insurance company and the hospital/sponsor to find out
which costs they cover and whether any costs will not be covered.

1-800-4-CANCER (1-800-422-6237) • www.cancer.gov

How can mychild get intoa clinical trial?

To get into a clinical trial, children first need to be evaluated to see ifthey meet the requirements for trial participation as outlined in the
study protocol. These requirements (also called eligibility criteria) may
limit trial participation to people who have a specific type and stage ofcancer or those in a certain age range. Many large children’s hospitals
and university hospitals participate in childhood cancer clinical trials.
Ask your child’s doctor about clinical trials that your child may be eligible
to participate in.

What is informed
consent?

Informed consent is the process by which you will be given a detailed
explanation about a clinical trial to help you decide if you want yourchild to participate. This process is carefully designed to protect the rights,
safety, and privacy of children participating in clinical trials. As part ofthe informed consent process, the doctors and nurses on the researchteam will answer all of your questions about the trial.
The informed consent document includes information about:●● the tests and procedures required by the clinical trial protocol●● the type of treatment received in the clinical trial (including whenand for how long treatment will be given) and how it compares to thecurrent standard treatment●● the possible benefits and risks of participating in the clinical trial

TREATMENT●● the name and purpose of the clinical trial●● any new information about the trial that might affect the decision tojoin or continue in the trial●● other treatments that are available●● your rights, such as the right to decide whether or not to have yourchild participate, as well as your right to withdraw your child from thetrial at any time●● key contact information, including the names of the person in chargeof the clinical trial (the principal investigator, or PI) and others on the
research teamIf you choose to have your child participate in a clinical trial, you will begiven an informed consent form, which includes written details about the
information that was discussed with you and describes the privacy of yourchild’s medical records. You will have to sign this form to show that you
agree to have your child take part in the clinical trial. Your child’s doctor
will also sign this form. However, the informed consent form is not a contract
and you may withdraw your child from the clinical trial at any time.

25

What is theassent process?

Your child will also be given information about the clinical trial andwhat to expect during treatment in a process called the assent process.
Like the informed consent process, the aim of the assent process is an
ongoing interactive conversation between the research team and thechild. Although formal agreement, or consent, for a child’s participation
in a clinical trial comes from the parent(s) rather than the child, thechild’s agreement to participate (assent) may also be required.
During the assent process, your child will be given age-appropriate
information about the purpose of the trial and what procedures they will
undergo. The information will be given in a variety of ways dependingon the child’s age, including written forms, conversations, question-andanswer sessions, online videos, diagrams, and drawings.
It is important to understand and carefully consider all of the treatment
options available for your child. Getting your questions answered canbring you to a place of understanding where you can make the best
decision for your child. The list of Questions to ask about clinical trials
section on page 28 may be helpful.

Clinical trial phases
Clinical research is conducted in a series of steps, called phases. Each phase aims to answer
specific medical questions. During early phase clinical trials, doctors learn about the safety, side
effects, and best dose of a new treatment for a specific type of cancer. In later trials, doctors study
whether the treatment works better than the current standard therapy and the long-term safety
and effectiveness of a treatment.

Phase I: Is the treatment safe?
Phase I clinical trials ask:●● What is the dose, or amount, of a treatment that can be given safely?
●● What is the best way to give this treatment? For example, should it be given by mouth or by

injection into a vein?
●● What are the side effects?

“Gaby’s doctor helped us find a clinical trial that was
testing a new drug. We believe this is her best chance.
It’s also a way to help doctors learn more and to help
other children. Standard treatment was not working
for our daughter.”

26

1-800-4-CANCER (1-800-422-6237) • www.cancer.gov

People who participate in a phase I trial often have advanced cancer for which the current
standard treatment has not worked or for which there is no current standard treatment. If a phase
I clinical trial shows that a treatment can be given safely to people, the best dose identified in thetrial will be used in phase II trials of the treatment.

Phase II: How does this treatment affect the cancer and the body?
“We decided to enter our daughter in a phase II clinical
trial with the hope that this treatment would shrink
the tumor. Our doctor explained that a phase I clinical
trial had already determined what amount of the
drug should be given.”
Phase II clinical trials ask:●● What are the side effects of the treatment?

Phase II clinical trials use the dose that was found to be best in phase I trials. Phase II clinical
trials continue to examine the safety and monitor the side effects of this new treatment. They
also look for evidence that the treatment may affect the cancer, but a phase II trial cannot show
for certain that a new drug is effective.

TREATMENT●● Does this treatment have an effect in people with a certain type of cancer?

Phase III trials: How does this treatment compare with thestandard treatment?
“Noelle’s doctor thought that treatment in this phase III
clinical trial was as good as, and perhaps better than, thestandard treatment. We had to travel to a hospital that isfurther from our home, but we are glad to have found a
hospital that gave us hope—and a doctor that our daughter
formed a close relationship with.”Phase III clinical trials ask:●● How does a new treatment, or a change to an existing treatment, compare with the current

standard treatment?

27

Patients in a phase III trial are randomly assigned (assigned by chance) to a control group or anintervention group. People who are assigned to the control group receive the usual or standard
treatment for their type of cancer. People who are assigned to the intervention group receive thetreatment that is being tested in the clinical trial. Random assignment helps prevent unintended
biases that could influence the results of the study, such as assigning sicker patients to the control
group. Patients in both groups are monitored carefully during treatment and often for many
months after treatment.
In some clinical trials, both the patients and doctors know which group the patient is. In otherclinical trials, neither the patient nor the doctors knows which group the patient is in and which
treatment the patient is receiving. The latter type of study—called a double-blind randomized
clinical trial—is considered the gold standard of scientific evidence for a new treatment because
the study design minimizes the possibility of the results being due to unintended biases. If theexperimental treatment in a phase III clinical trial works better and/or is safer than the current
standard treatment, it will likely become the new standard treatment.

Related resources●● Clinical Trials Information for Patients and Caregivers●● Children and Clinical Studies●● Children’s Assent●● NIH Clinical Research Trials and You

Questions to ask about clinical trials
About your child’s treatment choices●● What are all of my child’s treatment options?

●● What is the current standard treatment for the type of cancer that my child has?

●● What treatment clinical trials are open to children with this type of cancer?

●● Which treatment would you recommend for my child? Why?

●● At what hospitals is this clinical trial available?

28

1-800-4-CANCER (1-800-422-6237) • www.cancer.gov

About a specific treatment clinical trial●● What is the goal of this clinical trial?

●● How many children are currently taking part in this clinical trial?

●● When did the clinical trial start? How long will it last?

●● What type of treatment(s) would my child receive in the clinical trial?

●● How does the treatment in this clinical trial compare with the current standard treatment?

●● What tests will my child receive? How often?

●● How might treatment in this clinical trial affect my child’s day-to-day life and activities?

TREATMENT●● What doctors and specialists will my child see? Who will be responsible for my child’s care?

●● What short- and long-term side effects might my child have?

●● How long will treatment last?

●● If my child takes part in this clinical trial, how will it affect the choice of future treatments?

●● For what reasons would the clinical trial be stopped?

●● May I talk with other parents who have a child in this clinical trial?

About financial costs●● Who is sponsoring this clinical trial?

●● What costs does the sponsor of the clinical trial cover?

●● What costs does my health insurance policy cover? What costs do I pay for?

29

Cancer Treatments and Side Effects“Our daughter’s oncologist took the time to go over hertreatment plan with us. He answered all of our questions
and helped her know what to expect during treatment.
We know our daughter is in skilled and caring hands.
This gives us hope.”
Today cancer treatments are helping children to live longer and healthier lives than ever before.
This section has information about treatment plans, side effects, and Questions to ask about
your child’s cancer treatment section on page 32.
Information is given in the following pages about these treatments:●● Chemotherapy information on page 34●● Radiation therapy information on page 38●● Bone marrow transplantation and peripheral blood stem cell transplantation information

on page 40●● Surgery information on page 42●● Immunotherapy information on page 43●● Targeted cancer therapies information on page 44

Treatment plan
The type of treatment children receive depends upon the type of cancer they have and how
advanced the cancer is. Your child’s age and other existing health conditions are also factors.
Your child’s doctor will go over the details of your child’s treatment plan to help you and yourchild understand it. Often, pictures, videos, or drawings are used to explain how treatment works
and what to expect.
You will receive a written copy of your child’s treatment plan with information about:●● the goal of treatment and the type of treatment your child will get●● how often your child will get treatment●● how long treatment will last●● procedures and tests your child will have before, during, and after treatment●● possible side effects of treatment●● contact information for key medical people on your child’s health care team30

1-800-4-CANCER (1-800-422-6237) • www.cancer.gov

Side effects
Your child’s health care team will talk with you and your child about specific side effects yourchild may have, and how they will be managed. Side effects are health problems that happen
when treatment harms healthy tissues or organs. Some treatments cause minimal side effects.
Others can have serious side effects. Treatment is planned so your child has as few side effects
as possible. Side effects can vary from child to child, even among those receiving the same
treatment. Not every child gets every possible side effect of a particular treatment, and somechildren get few side effects.

About fertility preservation

Your child’s age and sex will determine which procedures can be used for fertility preservation.
Some of the treatment methods listed below are experimental and still being tested inclinical trials.

TREATMENTAsk your child’s doctor whether treatment might affect your child’s ability to have children in
the future. If your child’s doctor says that it might, then it is a good idea to talk with a fertility
preservation specialist before treatment starts. Keep in mind that delaying treatment to address
fertility options may not always be recommended. Nevertheless, it is important to talk withyour child’s doctor about the effect that treatment might have on your child’s fertility before
treatment begins.

Fertility preservation methods for girls include shielding the ovaries during radiation therapy.
For girls who have gone through puberty, eggs can be frozen (egg cryopreservation) before
treatment. For girls who have not gone through puberty, the possibility of freezing ovariantissue (ovarian tissue cryopreservation) before treatment is being studied in clinical trials.
Fertility preservation methods for boys include shielding the testicles during radiation
therapy, sperm banking for boys who have reached puberty, and testicular sperm extraction
and testicular tissue cryopreservation for boys who have not reached puberty. Testicularsperm extraction and testicular tissue cryopreservation (also know as freezing) are being
studied in clinical trials.

For more information about fertility preservation or to find a fertility preservation center near
you call the FERTLINE at (1-866-708-3378) or visit Oncofertility Consortium®.

“Even though our daughter’s fertility was far from ourminds, the doctor talked with us about how treatment

might affect her ability to become pregnant one day. I’m
glad that the doctor talked with us.”31

Questions to ask about your child’s cancer treatment
About treatment for this type of cancer●● What treatment(s) are available for the type of cancer that my child has?

●● What treatment(s) do you recommend for my child? Why?

●● What is the goal of this treatment?

●● How will the treatment be given? What happens during a treatment session?

●● How does this treatment work?

●● What are the risks of this treatment?

●● What are the next steps if my child’s cancer does not respond to this treatment?

●● About what percentage of children receiving this treatment are helped by it?

About the treatment schedule●● How often will my child receive treatment? How long will each treatment last?

●● Where will treatment be given? For example, will my child receive in-patient or out-patient

treatment? Will hospital stays be needed?
●● How many treatments will my child receive? How long will the entire treatment plan last?

32

1-800-4-CANCER (1-800-422-6237) • www.cancer.gov

About side effects and supportive services●● How do children who go through this type of treatment feel—both physically and emotionally?

●● What supportive care and complementary practices (such as music therapy, acupuncture,physical therapy, and guided imagery) are available to help my child feel better?
●● What side effects may happen during treatment? How long will these side effects last?

●● How will the health care team work to reduce these side effects? What can I do to help mychild feel better?

●● Will my child’s fertility be affected? What are the options to preserve my child’s fertility?

About making a decision

TREATMENT●● What permanent or lasting side effects might my child have after treatment is completed?

●● When do we need to choose a type of treatment?

●● When does my child need to start treatment?

●● What procedures should my child have before starting treatment, for example, should mychild have a dental check-up? Should my child and others in the family receive or avoid any
vaccines?

Related resources●● Pediatric Cancer Treatment Summaries (PDQ®)●● Preserving Fertility in Children with Cancer (ASCO)●● Oncofertility Consortium®
●● Side Effects

33

Chemotherapy“Our daughter’s nurse helped her
through chemotherapy—telling
her what to expect, and helping
her smile.”

How chemotherapy works
Chemotherapy is treatment with drugs to stop or slow the growth of cancer cells. Chemotherapy
works by destroying cells that are in the process of dividing. Most cancer cells divide rapidly, sothey are the cells that are most likely to be destroyed by chemotherapy. However, some types ofhealthy cells also divide rapidly, which means that they can be destroyed by chemotherapy aswell. Most chemotherapy drugs travel through the bloodstream, so they will eventually reachcells all over the body.

How chemotherapy is given
The most common ways that chemotherapy is given are:●● through an IV (intravenous) line into a vein●● as a pill, capsule, or liquid that is swallowed (oral chemotherapy)

Chemotherapy may also be given:●● as a shot (injection) into a muscle or another part of the body or under the skin●● as a cream that is rubbed into the skin (topical chemotherapy)

Chemotherapy is given in cycles. A cycle is a period of treatment followed by a period of rest
(no treatment). The rest period gives your child’s body a chance to build new healthy cells. For
example, your child may get chemotherapy for 5 days in a row, followed by no chemotherapy for
10 days (that would be one cycle).

More about intravenous chemotherapy
If your child is receiving chemotherapy through an IV line, then she will most likely have acatheter inserted into her body. A catheter is a thin, flexible tube that is used to givechemotherapy and other drugs, blood transfusions, and intravenous fluids and to takeblood samples.

34

1-800-4-CANCER (1-800-422-6237) • www.cancer.gov

Types of catheters include:●● Port-a-cath (port or subcutaneous implantable

Insertingneedle into
Port-a-cathport) . This type of catheter is a small, round discmade of plastic or metal with a silicone center. It isinserted under the skin on your child’s chest during
surgery. Your child may be given general anesthesia
Port-a-cathor placed under conscious sedation during thisunder skin
Superior
vena cava
procedure. The port is connected by a catheter toHearta large vein in your child’s chest. Chemotherapy
Blood isis given through a needle that is inserted throughdrawn from
Port-a-caththe skin into the port. A numbing cream may be
applied to the skin first. The needle is removed after
the drugs are given. This type of catheter is completely inside your child’s body, so it doesn’t
require any special care when your child is bathing. It can be left in for a long time, and yourchild has a lower chance of developing infections and blood clots with a port than with othertypes of catheters.

© 2015 Terese Winslow, U.S. Govt. has certain rights

This type of catheter is a thin, flexible tube that isinserted through an incision in your child’s chest
during surgery and then threaded (tunneled) under
the skin into a large vein near the heart or into theright atrium of the heart. The part of the catheter
that is outside the body is taped to the chest and isused to give chemotherapy, so no needle sticks areneeded. This type of catheter can be left in place
for a long period of time. It needs to be cleaned(flushed) every day. Care needs to be taken so it does
not get pulled out or wet. There is a small chance of
infection and blood clots with this type of catheter.

Centralvenouscatheter

TREATMENT●● Central venous catheter (tunneled catheter) .

Heart© 2015 Terese Winslow, U.S. Govt. has certain rights●● Peripherally inserted central catheter (PICC) .

This type of catheter is a thin, flexible tube that isinserted into a vein in the upper arm and guided
into a large vein near the heart. This type of catheter
can be inserted by a nurse and does not require
surgery. The part of the catheter that is outside thebody is taped to the skin on the arm and is used togive chemotherapy. This type of catheter avoids theneed for repeated needle sticks and can stay in place
for a long time. It needs to be cleaned (flushed)
every day. Care needs to be taken so it does not
get pulled out or wet. There is a small chance of
infection and blood clots with this type of catheter.

Heart

PICC
Vein

Intravenousline© 2015 Terese Winslow, U.S. Govt. has certain rights

Catheters may be used for chemotherapy, as well as to give other medicine and for blood draws
and blood transfusions.

35

Side effects of chemotherapy
Chemotherapy destroys cells that grow and divide quickly. Cancer cells grow and divide quickly,
but so do some healthy cells, such as cells that line the mouth and stomach and cells that makehair grow. Sometimes chemotherapy can slow or destroy cells in the bone marrow that makeblood cells. Damage to these healthy cells causes side effects. Side effects differ greatly, depending
upon the type of chemotherapy drug that your child is receiving.
●● Common side effects of chemotherapy may include fatigue, nausea, diarrhea, mouth sores,

hair loss, anemia, and increased risk of infection. You may find the practical tips in the
Chemotherapy Side Effects Series helpful as you talk with your child’s nurse to learn more.
●● Late effects are problems that may happen months or years after treatment. You may want to

ask your child’s doctor about possible late side effects for the type of treatment that your childis receiving. You can learn more in the Long-term and late effects section on page 68.

Special precautions you may need to take“John is getting a type of chemotherapy that made it very
important to take certain safety precautions at home. Our
child’s nurse went over these instructions, such as wearing
gloves at certain times and washing soiled sheets separately.
Make sure you understand the instructions from your nurse
and keep them handy.”
Many chemotherapy drugs are harmful to healthy people. You may need to take precautions if
you are giving your child chemotherapy at home. Talk with your child’s doctor about these andother precautions you may need to take.
●● Take care not to touch:■●oral chemotherapy drugs (such as pills, capsules, or liquids)■●

body fluids (such as vomit, urine, stools, or blood) from your child■●items that are soiled with chemotherapy drugs or with body fluids, such as clothes or sheets●● Wear gloves if you are in contact with soiled items or body fluids.
●● Wash soiled items (such as the countertop, bedpan, or bucket) with soap and hot water.
●● Wash soiled items apart from the rest of the laundry. If you cannot wash soiled items rightaway, put them in a sealed plastic bag. Wash soiled laundry on the hot water cycle of thewashing machine. Run the load twice.
●● Double bag all soiled disposable items, such as used gloves. Ask your child’s nurse how todispose of soiled items. You may need to put them into special waste bags or containers marked“hazardous” and bring them back to the hospital for disposal.

36

1-800-4-CANCER (1-800-422-6237) • www.cancer.gov

Questions to ask about safety precautions
About taking necessary precautions to stay safe●● What special care and precautions should I take when caring for my child?

●● What should I avoid touching or coming into contact with? For how long?

●● How should I dispose of soiled items?

●● What should I do if I touch soiled items or body fluids?

●● What other problems or accidents should I call you about?

●● Where should I keep and store the oral chemotherapy drugs?

●● Should I wear a mask and/or gloves when handling these drugs?

TREATMENT

About preparing oral chemotherapy●● How often do I give these drugs to my child? What should I do if my child vomits?

●● Should the drug be taken with or without food?

●● Should pills be swallowed whole or can they be crushed? If the pill can be crushed, whatshould I use to crush it?
●● How should I clean utensils, countertops, and other items used?

●● What other precautions should I take?

Related resources●● Chemo, Craziness, and Comfort, My Book about Childhood Cancer (ACCO)●● Chemotherapy●● Side Effects

37

Radiation therapy“Our child is such a curious kid. He always hasquestions. He wants to know ‘What’s going tohappen today?’ and ‘How does it work?’ Talking
with his child life specialist has helped a lot. So hasreading together about how treatment works.”

How radiation therapy works
Radiation therapy uses high-energy radiation to destroy cancer cells and shrink tumors. Externalbeam radiation therapy is the most common type of radiation therapy used to treat cancer inchildren. Other types include internal radiation therapy and systemic radiation therapy.

How radiation therapy is given●● External-beam radiation therapy uses a machine that aims radiation at the cancer. Lead shields

protect the parts of your child’s body that are not receiving radiation. Young children may
be given medicine that helps them relax, stay still, or sleep during treatment. The machinethat delivers the radiation is large and noisy, and it will rotate around, but will not touch,your child. This type of radiation is usually given every day for several weeks. Although eachtreatment session may last from 30 minutes to 1 hour, most of that time is spent getting
your child in the correct position. Your child will most likely receive radiation for only 1 to
5 minutes during each visit.
●● Internal radiation therapy (brachytherapy) uses a radiation source that is sealed in seeds,

ribbons, or wires. The radiation source is placed inside the body near the cancer cells andmay be left in place for minutes, hours, or days, depending upon the type of brachytherapy.
Sometimes, the radiation source is left inside the body permanently, even after it is no longer
giving off any radiation.
●● Systemic radiation therapy is a type of radiation therapy in which a radioactive substance isswallowed or injected into the body and travels through the blood to destroy cancer cells.
One example is radioactive iodine, which is used to treat some types of thyroid cancer.

38

1-800-4-CANCER (1-800-422-6237) • www.cancer.gov

Side effects ofradiation therapy
Radiation therapy can harm
healthy cells as well as cancer cells.
Damage to healthy cells causes side
effects. Side effects depend on thepart of the body receiving radiation
as well as the dose of radiation.
Talk with your child’s doctor tolearn what side effects your child
may have, and learn how they will
be managed.
●● Common side effects ofGetting ready for externalbeam radiation therapy
Before receiving external beam radiation therapy, yourchild will have a treatment planning session (called asimulation) in which:●● detailed scans are taken of the tumor and the areaof normal tissue around it●● small marks, often dots of ink, are put on the skin toshow where to aim the radiation●● if needed, a body mold or mask is made to help

your child stay in the exact same position during●● Late effects are problems that may happen months or years after treatment. You may want to

ask your child’s doctor about possible late side effects for the type of treatment that your childis receiving. You can learn more in the Long-term and late effects section on page 68.

TREATMENT

radiation treatment include skineach treatment
irritation and fatigue. You may
find the practical tips in the
Radiation Therapy Side Effects Series helpful as you talk with your child’s nurse to learn more
about what side effects your child may have.

Related resources●● Radiation Therapy●● Side Effects

39

Bone marrow transplantation (BMT) and peripheral
blood stem cell transplantation (PBSCT)“Our child’s nurse met with our daughter tohelp her learn what to expect and answer
questions she had. It was very reassuring.”

How BMT and PBSCT work
Bone marrow transplantation (BMT) and peripheral blood stem cell transplantation (PBSCT) areprocedures that restore blood stem cells (also called hematopoietic stem cells) that are destroyedby the high doses of chemotherapy and/or radiation therapy used to treat children with certain
cancers. Blood-forming stem cells are important because they make white blood cells that fightgerms, red blood cells that carry
oxygen to the body’s tissues, andplatelets that help blood to clot.

Types of stem cell transplants

Most blood-forming stem cells arefound in the bone marrow. Someare found in the blood circulating
throughout the body (peripheral
blood); they are also present inumbilical cord blood. Cells fromany of these sources can be used intransplants. During a transplant,
your child is given healthy bloodforming stem cells. These cells travelto the bone marrow, where they
begin to make healthy blood cells.

●● Autologous transplants use your child’s own blood-

forming stem cells. This type of transplant is used
when there are enough healthy stem cells to collect
before treatment. Any cancer cells are removed.

●● Syngeneic transplants use stem cells from your child’s

identical twin, if there is one.

●● Allogeneic transplants use stem cells from a biologicalsister, brother, parent, or other family member or froman unrelated donor whose stem cells match yourchild’s stem cells as closely as possible.

Finding a matched donor“Our daughter was a match for her sister. We knewof other children and teens who found a donor match
through the National Marrow Donor Program®.”Each person has a unique set of proteins on the surface of their cells. These proteins are called
human leukocyte antigens (HLA). The ideal donor for your child is one with the greatest numberof matching HLA antigens. Having a well-matched donor lowers the risk of complications, such as

40

1-800-4-CANCER (1-800-422-6237) • www.cancer.gov

graft-versus-host disease (GVHD), and increases the chance that your child’s body will accept thedonor’s stem cells. Your child’s biological siblings are more likely than an unrelated person to be awell-matched donor.

About the transplantYour child will receive stem cells through a catheter, just like a blood transfusion. This can take 1
to 5 hours.
Most children stay in the hospital for a period of time after the transplant to give the body timeto create enough new white blood cells to fight infection. During this time, your child will bemonitored closely and protected from germs. She will get frequent blood tests to make sure thatnew blood cells are being made and that the cancer has not come back.

After an autologous transplant, it may take your child’s immune system several months to fully
recover. After an allogeneic or syngeneic transplant, it may take 1 to 2 years for the immune
system to return to normal.

Side effects and risks of stem cell transplants

TREATMENTYour child may also have a bone marrow aspiration. During this procedure, a small sample ofbone marrow is removed through a needle and examined under a microscope to help doctors
determine how well your child’s bone marrow is working. Your child may also get transfusions ofblood cells, platelets, and antibiotics.

The likelihood of side effects is specific to each child’s treatment. Your child’s doctor will talkabout which ones may apply to your child.
●● Major risks include an increased susceptibility to infection and bleeding. Antibiotics may beneeded to prevent or treat infection. Transfusions of platelets may be given to prevent bleeding
and transfusions of red blood cells may be given to treat anemia.
●● Short-term side effects may include appetite loss, fatigue, hair loss, mouth sores, nausea,

vomiting, and skin reactions.
●● Graft-Versus-Host Disease (GVHD) is a complication after an allogeneic transplant that canharm the skin, liver, and intestines. The white blood cells from the donor identify cells in
the patient’s body as foreign and attack them. Specific medicines are used to lower the risk of
GVHD.
●● Late effects are problems that may happen months or years after treatment. You may want to

ask your child’s doctor about possible late side effects for the type of treatment that your childis receiving. You can learn more in the Long-term and late effects section on page 68.

Related resource●● Blood-Forming Stem Cell Transplants●● Be The Match®, operated by the National Marrow Donor Program®

41

Surgery
How surgery is used totreat cancer
Surgery (also called an operation) is an essential
part of treatment for many solid tumors. As muchof the tumor as possible is removed. Your child
may receive chemotherapy or radiation therapy
before surgery, to shrink the tumor, or after
surgery, to destroy any cancer cells that may
remain. The type of surgery depends on thetype of cancer your child has and where thetumor is located.

Learn what to expect
after surgery
After surgery, it is common to feel pain.
Medicine is given to treat pain and to help yourchild be more comfortable. Side effects dependon the type of surgery and the size and locationof the tumor. People on your child’s health careteam will prepare you and your child for thephysical and emotional side effects of surgery.
You and your child will also learn about typesof rehabilitation, such as physical therapy, that
may take place after surgery.
Talking with the parents of children who
have had the same type of surgery that yourchild will have can be very informative andreassuring. This is especially true for surgeries
that change your child’s physical appearance,such as amputation or limb-sparing surgeries.
Let your child’s doctor know if you would
like to talk with the parents of other children
who have had a particular type of surgery.
For example, it may also be possible for yourchild to talk with a child who has had an
amputation, limb-sparing surgery, or othermajor surgery. Talking with a child who can
now run, bike, swim, and do other physicalactivities can be reassuring.

42

1-800-4-CANCER (1-800-422-6237) • www.cancer.gov

Types of surgery●● Resection: This is surgery to remove tissueor part or all of an organ. Often, the tissue
around the tumor and sometimes nearby
lymph nodes may also be removed during
the operation.

●● Amputation: An operation to remove alimb (arm or leg) that has cancer.

●● Limb-sparing surgery (also called limb-

salvage surgery): An operation to remove
some types of tumors in a limb (suchas an arm or leg) without removing thewhole limb. Some of the bone and tissue
around the tumor may also be removed,
and the part of the limb that is removed
may be replaced with an implant. This
type of surgery helps to save the use andappearance of the limb. It is used to treat
some cancers of the bone and soft tissue.

●● Craniotomy and resection: An operationin which a piece of the skull is removed. It
may be done to remove a brain tumor or
abnormal brain tissue. During this surgery,an incision is made and a section of theskull is removed (called a craniotomy) to
expose the brain. A neurosurgeon thenremoves as much of the tumor as possible(called debulking). The piece of skull thatwas removed is then put back in place.

●● Reconstructive surgery: An operation toreshape or rebuild (reconstruct) a part ofthe body changed by previous surgery.

You can learn more about whether or notsurgery will be used to treat the type ofcancer that your child has by going to thisAlphabetical List of Pediatric Cancer
Treatment Summaries PDQ®.

Immunotherapy“Our son’s health was closely
monitored during treatment. We
were so glad to be able to get thistreatment through a clinical trial.”

How immunotherapy works
Immunotherapy is a type of biological therapy that stimulates and strengthens the body’s immune
system, so it can better fight cancer, infection, and other diseases. Immunotherapy may be usedwith other treatments, such as radiation therapy and chemotherapy. This type of treatment isbeing studied in clinical trials for specific types of cancer.

●● white blood cells called phagocytes, B lymphocytes (antibody-producing cells), T lymphocytes(helper T cells and cytotoxic T cells), and natural killer cells●● organs such as the spleen, thymus, lymph nodes, tonsils, and bone marrow

The immune system attacks things in the body that it recognizes as foreign, such as viruses andbacteria, as well as some damaged, diseased, or abnormal cells. This response is triggered when
the immune system comes across a substance on the foreign invader (called an antigen) that itrecognizes as “foreign.” However, some cancers have developed ways of evading detection by the
immune system, or of suppressing the immune system, which is why immunotherapy is an
important tool to fight cancer.

TREATMENTTo understand immunotherapy, it helps to understand the immune system. This system is madeup of a network of cells and organs that work together to defend the body against disease andinfection. These include:

How immunotherapy is given
Some types of immunotherapy are given as shots or pills. Others are given through an IV line.

Side effects of immunotherapy
Side effects depend on the type of immunotherapy and vary from person to person. Your child’s
doctor will talk with you about how to manage possible side effects of immunotherapy which
may include:●● rashes or swelling where the treatment is injected●● flu-like symptoms (such as fever, chills, nausea, vomiting, loss of appetite, fatigue, bone pain,

and muscle aches)●● allergic reactions, such as a rash, and wheezing or shortness of breath

Related resources●● Immunotherapy●● Cancer Immunotherapy in Children

43Targeted cancer therapies
Researchers are working together to facilitate
the discovery of molecular targets and touse those findings to improve treatment forchildren with cancer.

How targeted cancer therapies work
Targeted cancer therapies (also called molecularly targeted therapies) are drugs or other substancesthat interfere with specific molecules involved in the growth of tumors. Sometimes this kind oftreatment is referred to as precision medicine.

Targeted therapies work to:●● interfere with the way cancer cells respond to signals in their environment●● block the growth of blood vessels to the tumor, which prevents tumor growth●● promote a process of controlled cell death which cancer cells typically avoid●● stimulate the immune system to destroy specific cancer cells●● deliver toxic molecules to cancer cells, causing the cells to die

By focusing on molecular and cellular changes that are specific to cancer, targeted cancer
therapies may be more effective than other types of treatment. Many targeted cancer therapies
have been approved for the treatment of specific types of cancer. Others are being studied inclinical trials and many more are in earlier stages of development.

How are targeted therapies given?
Some types of targeted therapy drugs are given intravenously (IV). Others are given as a pill thatyour child will take by mouth and swallow.

Side effects of targeted therapy
The side effects of targeted therapy, for the most part, differ from those of standard chemotherapy andsome can be substantial. Side effects are based on the specific targeted therapy drug that your child isreceiving. Talk with your child’s doctor about specific side effects and how they will be managed.

Related resources●● Targeted Cancer Therapies●● TARGET: Therapeutically Applicable Research to Generate Effective Treatments●● TARGET Initiative Leading the Way to New and Exciting Discoveries inChildhood Cancers

44

1-800-4-CANCER (1-800-422-6237) • www.cancer.gov

Common Health Problems
During treatment, your child’s health care team will provide a type of care called supportive care or
symptom management. This care helps to prevent or manage health problems caused by the cancer
and its treatment, such as infection, stress, nutritional problems, pain, and changes to your child’s
immunization schedule. The following pages have tips to help with each of these health problems.

Infection“David was great about washing his hands. The nurse
said this was the most important step he and ourfamily could take to prevent infection.”

invade and grow in the body.
Children being treated forcancer are often at increased riskof infection. Some cancers andsome types of treatment makeit harder for the body to makenew white blood cells —cells that
help fight infections. Often, themain source of an infection in achild with a lower-than-normal
level of white blood cells is frombacteria in his or her own body.
Your child’s nurse will checkyour child’s blood cell counts
regularly and tell you if thecounts are low. Low blood cellcounts or other signs of serious
infection may delay treatment
or mean that your child needs
to stay in the hospital. In somecases, medicine may be given
to increase the number of whiteblood cells after chemotherapy.

Tips to protect your child from germs
Although it’s hard to completely eliminate the risk ofinfection, talk with your child’s nurse to learn more about
these and other steps you and your child can take:

TREATMENT

Infection happens when germs●● Wash hands well . Always have your child and thosearound him (especially your family and the people on
your child’s health care team) wash their hands well withsoap and warm water. This is especially important before
eating, after using the bathroom, after being in a public
place, and around pets – if allowed.

●● Stay extra clean . If your child has a catheter, it’s importantto keep the area around it clean and dry. It’s also importantthat your child’s teeth are clean after meals and before
going to bed. Check your child’s mouth for sores or othersigns of an infection each day. If your child gets a scrape orcut, make sure to clean it well, right away.

●● Stay away from germs . Your child needs to stay awayfrom crowds and people who are sick. You may alsoneed to take special precautions when preparing food. For
example, fruits and vegetables may need to be cooked or
peeled, and meats may need to be cooked thoroughly.
Help your child to eat hot foods when they are hot andcold foods when they are cold. Don’t let food sit out.

45

Signs of infection
Infections during cancer treatment are medical emergencies. Discuss the signs of infection withyour child’s doctor and know what steps to take if your child has:
F● chills

F● sores or white coating in the mouth or on

F● cough or sore throat

the tongue
F● swelling or redness, especially around acatheter
F● urine that is bloody or cloudy
F● pain or burning when urinating
F● other signs to call about: __________________

F● ear pain
F● fever of 100.5° F (38° C) or higher*
F● headache or sinus pain
F● neck that is stiff or sore
F● rash* Ask if you should take your child’s temperature orally or rectally—and check with your child’s nurse to makesure you are taking the temperature correctly.

StressLowering stress can improve your child’s mood and help reduce pain and discomfort.

Tips to calm your child●● Prepare your child . Work with your child’s nurse and child life specialist to prepare your childfor new treatments or tests. For example, children may visit the room where they will gettreatment, touch the equipment, meet the doctors, and take part in medical play, with a childlife specialist or nurse, before a new test or treatment.

●● Help your child to relax . Look for ways to help your child let go of stress and frustration. Ask

about activities that can entertain and relax your child. Having things to look forward to, suchas calls to friends, can also help.

●● Be there for your child . Let children know you are there for them, and that they can come toyou for a hug, laugh, an honest answer, or a shoulder to cry on.

●● Get counseling support . A social worker, child life specialist, and/or nurse can help improveyour child’s ability to handle stress and difficult situations. For emotional problems thatlast or get more serious over time, your child’s health care team can give you the names ofpsychologists or other mental health experts who can help.

Visit the Practices That Help Children: Integrative Medicine Approaches section on
page 76 to learn about more practices that may help to lower stress.

“When our son was stressed, sometimes a scooter
ride down the hall helped. Other times we played
cards or wrote together.”46

1-800-4-CANCER (1-800-422-6237) • www.cancer.gov

Tips to help your child eat well●● Talk with a registered dietitian . Meet regularly with adietitian to get practical advice and strategies to help
your child.

●● Learn what types of foods and drinks are best for yourchild . Most children need to eat a variety of foods, while
focusing on nutrient-dense foods (such as lean meats andpoultry, whole-grain breads, cereals and pasta, beans, rice,
fruits, vegetables, and dairy products). Ask your child’s
dietitian for recipes and easy snacks that are recommended
for your child.

●● Some children may be advised to get extra protein and●● Encourage small, frequent meals . Smaller meals

throughout the day may be easier for your child to eat
than big meals.

●● Check before giving vitamins or other supplements .

Vitamin and herbal supplements may be discouraged
because they can change how some cancer treatments
work. For example, some vitamins interfere withabsorption of certain chemotherapy drugs. However
others may be safe so it is important to talk with yourchild’s doctor.

●● Take special care with food to lower the risk ofinfection . You may need to take special care as you handle
and prepare food. For example, fruits and vegetables mayneed to be cooked or peeled, and meats may need to bewell cooked.

●● Reduce side effects . Some side effects can make eating

difficult. Here are tips to help manage side effects
such as appetite loss, constipation, diarrhea, mouth sores,
nausea, and vomiting.

Good nutrition can help yourchild to feel better and staystronger. Most often, goodnutrition means eating a variety
of foods. However, it’s often
difficult for children to eat wellduring treatment. Being upset or
afraid can also make eating moredifficult. At times, it may be hardto get your child to eat much atall. Some children need support
such as medicines to increase
appetite, dietary supplements,
and IV fluids. Your child will
have her weight, height, andblood checked, to assure proper
growth and good nutrition.
Keep in mind these suggestions:
Be patient and praise your childwhen he eats well. It may takea lot of patience, creativity, andsome trial and error to help yourchild to eat well. Don’t argue
with, nag, or punish your childor make her eat. Keep mealtimes
calm.

TREATMENT

calories . Foods high in protein help to build and repair
muscles. Foods high in calories can prevent weight loss.
These include food such as eggs, cheese, whole milk, ice
cream, nuts, peanut butter, meat, and fish.

Nutrition

Sometimes watching television
or a movie can distract yourchild and make it easier for him
to eat. Physical activities, suchas walking or playing, may
increase your child’s appetite.
Ask about activities that may berecommended to increase yourchild’s appetite.

●● Call about changes . If your child is not eating or

drinking well don’t wait for your child to lose weight
before taking action.

47

“In addition to drinking water, my child would drink ahomemade smoothie made with fruit, milk, and peanutbutter in the blender. On days when he didn’t feel likeeating too much, we focused on offering him healthy fluids.”

Tips to help your child drink liquids
Drinking enough liquid is extremely important. It’s especially important if your child hasless of an appetite, is vomiting, or has diarrhea. Losing fluid can lead to dehydration, adangerous condition. If your child becomes weak, dizzy, and has dark yellow urine, he islikely dehydrated.
Take these steps to help your child drink enough liquids:●● Learn how much liquid your child needs each day . Talk with your child’s dietitian ornurse to learn how much liquid your child should drink each day to prevent dehydration.
This will depend on your child’s age and other health conditions, such as if she is also losing
fluids through vomiting or diarrhea.

●● Give your child choices . In addition to drinking fluids, you can serve other liquids such as

popsicles, Jell-O®, pudding, ice cream, and soup to help your child.

●● Slow may be best . If your child has an upset stomach, try liquids first. Start with small

amounts of clear liquids (water, Pedialyte®, broth, or Jell-O®). If your child can keep thesedown, you may want to try adding denser liquids, such as strained cereal, pudding, yogurt,or milkshakes, before slowly transitioning back to solid food.

●● Try making shakes or smoothies . Some children find shakes or smoothies made fromnutritious high-calorie, high-protein foods are easier to get down than solid foods. It may
also be more fun to drink through a straw. Talk with your child’s dietitian about whether
to add nutrition supplements.

Pain
Seeing your child in pain is extremely difficult. This section can help you learn how to work withyour child’s health care team to prevent or reduce pain that your child may have.
Controlling pain is an important part of treating children with cancer. Pain is not something thatyour child has to “put up with.” Your child will feel stronger and better during treatment if hedoesn’t have pain. Pain can suppress the immune system, increase the time it takes the body toheal, interfere with sleep, and increase the chances of depression.

48

1-800-4-CANCER (1-800-422-6237) • www.cancer.gov

What causes pain?
These things may cause your child pain during treatment for cancer:●● treatments, such as surgery●● procedures, such as a bone marrow aspiration or a spinal tap●● needle sticks for blood draws or injections●● side effects, such as mouth sores, constipation, or diarrhea●● cancer, such as when the tumor presses against nerves or other parts of the body

How can I tell if my child is in pain?
Trust your judgment and observations as a parent. If you think something isn’t right and yourchild may be in pain, talk with your child’s doctor. Signs of pain vary by age.

Older children: Older children will usually tell you when something hurts. Still, some children
do not want to let on that they are in pain because they do not want to upset you. Older children
who have pain may wince, moan, or grimace. Their eyes may be red or puffy from crying.
Encourage your child to tell you or the doctor about pain.

TREATMENT

Very young children: Babies and young children show discomfort by crying when touched. Or
they may cry more often or have a different-sounding cry. Other signs of pain include not being
able to be comforted or being withdrawn or tense. A change in sleeping or eating patterns, ortugging at a part of the body, may also be signs of pain in young children.

Who treats pain?
Pain experts may be oncologists, anesthesiologists, neurologists, surgeons, or other doctors, suchas psychiatrists, psychologists, nurses, or pharmacists. Specialists in music or art therapy or those
who practice acupuncture, biofeedback, massage therapy, or hypnosis may also help to reduce
pain. These specialists often work together as part of a pain or palliative care team to assess yourchild’s pain and develop a pain control plan.

How is pain controlled?
Each child needs a personalized plan to control pain—based on their age, treatment, and side
effects. You and your child’s health care team will work together to manage your child’s pain.
Over-the-counter pain medicines, such as ibuprofen (also known as Advil®) or acetaminophen(also known as Tylenol®), may reduce pain and are a good first approach. Opioids may be prescribed
if over-the-counter medicines do not work. Talk with your child’s doctor or nurse if you haveconcerns about the possibility of addiction to pain medicine. Not giving your child enough pain
medicine can lead to pain that could have been prevented.
In addition to medicines, certain practices can be used to lower pain:●● Distraction and relaxation . Playing games, listening to or reading books, or watching movies

may distract or take your child’s focus away from the pain. Activities such as music, breathing
exercises, or blowing bubbles may help to relax your child, which can lower pain, stress, andmuscle tension.

49

●● Complementary practices such as massage or acupuncture . These practices may be effective inlowering pain.
●● Heat and cold therapy . A heating pad may relax muscles to help reduce pain. Cold packs mayhelp reduce swelling and pain.
●● Exercise . Walking and other gentle exercises increase blood flow and raise endorphins(substances the body makes naturally to reduce pain and give a feeling of well-being).
●● Sleep . Being well rested may reduce children’s level of pain and improve their overall sense ofwell-being.
Learn about more ways to reduce pain in the Practices That Help Children: Integrative
Medicine Approaches section on page 76.

What steps can I take at home to help reduce pain?
Here are some ways you can help reduce pain levels when your child is at home:●● Follow all instructions from your child’s doctor . You may be asked to take your child’stemperature and check with the doctor before giving some pain medicines. This is becausesome pain medicines can reduce fevers, which may mask, or hide, this sign of infection.
●● Give the pain medicine as prescribed . Make sure your child takes the correct amount of pain

medicine at the right time. Don’t try to hold off, or wait until your child’s pain gets too bad,before giving pain medicine. Waiting too long between doses could make the pain take longer
to go away or increase the amount of pain medicine needed to lower pain.
●● Learn what side effects to expect from pain medicine . Pain medicine may cause sleepiness,stomach upset, constipation, or gas. These side effects may lessen over time, but your child’s
health care team should always be told about them.
●● Use a pain scale . Ask for a pain scale from your child’s hospital that is age-appropriate. Ask yourchild questions such as: Where does it hurt? What does the pain feel like? How bad is the pain?
When did the pain start?
●● Track your child’s level of pain . Keeping a written record of pain can help your child’s healthcare team to develop a pain control plan for your child. Take it with you to appointments.
Keep a chart, or take notes, and write down information such as:■●

the date and time your child had pain■●

your child’s pain level when medicine was given■●

the type and amount of pain medicine given■●

what time it was when the pain went away or when the pain medicine was given again■●side effects or other problems from the pain medicine“We use a chart at home to record Jessie’s pain level and thenshare it with his doctors. We found that the pain medicine
worked well to keep his pain under control. Acupuncture
also helped. Sometimes we watched movies, which helped to
distract him from the discomfort.”
50

1-800-4-CANCER (1-800-422-6237) • www.cancer.gov

What should I call my child’s doctor about?
Contact your child’s doctor right away if the pain is severe and you are not able to reduce it.
Uncontrolled pain is a medical emergency.
Call your child’s doctor if:●● the pain isn’t getting better or going away with the pain medicine●● the pain makes it hard for your child to eat, sleep, or play●● your child has new pain

Immunizations“We talked with Jasmine’s nurse to learn what vaccines she

TREATMENT“Our child’s doctor helped us control our son’s pain.
She was so kind. She also explained that my childwouldn’t get addicted to pain medicine that was taken
as prescribed. This helped me to understand that I
should not try to hold off or limit his pain medicine.”and her sisters could get when she was going throughtreatment and which ones we needed to delay.”

During treatment, always check with your child’s doctor before getting or refusing a vaccine.
●● Your child should not get a live virus vaccine or have close contact with someone who has

recently had such a vaccine. Measles, mumps, or chickenpox, as well as FluMist®, are all
examples of live virus vaccines.
●● Your child may be able to receive a flu shot (which is an inactive virus vaccine), as well vaccinesthat do not contain live viruses or bacteria such as those against diphtheria, whooping cough(pertussis), and tetanus.

After treatment, your child’s doctor will advise you when it is safe to receive a live vaccine, basedon your child’s situation.

Related resources●● Side Effects●● Eating Hints●● Pain Control: Support for People with Cancer

51

Finding Ways to Cope and Stay Strong“Being strong meant learning to rely on others.
I found that friends wanted to be there for ourfamily. All I needed to do was ask. I also met witha counselor who gave me insights and listened inways that friends could not.”Asking for support from others may not be easy. This section has practical advice to guide you tothe help you may need during this difficult time. Staying emotionally and physically healthy canenable you to tackle the many tasks surrounding your child’s treatment.

Getting help and support from others
Research shows what you most likely already know—help from others strengthens and encourages
your child and family. Let others help during this difficult time. Family and friends may want toassist, but might not know what you need. You may want to:●● Take the first step . Let family, friends, and coworkers know about your child’s cancer andtreatment. Share only what you feel comfortable sharing.
●● Tell people how they can help . Keep a list of things that others can do for your family. For

example, people can cook, clean, shop, or drive siblings to their activities.
●● Find an easy way to update family and friends . You may want to use a social media site ora site such as CarePages, Caring Bridge, My Cancer Circle, or MyLifeLine.org to update
people and ask for practical help. Other sites, such as Lotsa Helping Hands, make it easier toorganize help from people in your community.

“My neighbor Liz is a gem. She posted updates
for our friends about Calvin’s progress. She also
helped friends make posters to decorate ourson’s room.”

52

1-800-4-CANCER (1-800-422-6237) • www.cancer.gov

Getting professional help
If you are not sleeping well, are often in a depressed mood, or feel irritable or anxious, talk withyour primary care doctor. Your doctor can give you the names of health care professionals who
can help you, such as a psychiatrist, psychologist, family therapist, or social worker. Some parents
find that it helps to talk with a leader in their spiritual community.

“I’m not the kind of person who seeks outside help. But, I was
feeling so overwhelmed that I knew it was time to see a counselor
to get my stress under control. Getting advice from a trained
specialist really helped me get through this difficult time.”

Joining a support group
Some support groups meet in person, whereas others meet online. Many parents benefit fromthe experiences and information shared in these groups. Some parents find online message
boards helpful.

Working to keep relationships strong
Relationships are often strained and under pressure when a child has cancer. It may help to:

SUPPORT“My wife and I knew we couldn’t tackle this alone. We
met with a support group for parents of children withcancer. Our group brings in experts, and we learn what
has helped others. We’re also able to post messages to an
online support community that’s been helpful.”●● Keep lines of communication open . Parents often have different coping strategies. Talk about

how you each deal best with stress. Make time to connect, even when time is limited.
●● Remember that no two people cope the same way . So, if your spouse or partner does not seemas distraught as you, it does not mean he or she is suffering any less than you are.
●● Make time for loved ones . Even a quick call, text message, or handwritten note can go a longway in making a loved one’s day a good one.

“I knew we were in trouble even before the social worker told us
how many marriages fail when a child is very sick. My husband
and I deal with stress in very different ways. It helped to try
and understand where the other person was coming from.”

53

Making time to renew your mind and body
“I knew that in order to be there for my childand my family, I needed to reach a calm place
within myself.”

It can be tempting to put your own needs on hold and to focus solely on your child. But it isimportant to take time for yourself so you have the energy to care for your child.
Here are some tips to get you started:●● Find ways to relax and lower stress . Some parents try something new, such as a yoga or deep-

breathing class at the hospital. Others are refreshed by being outdoors, even for short periods.
Whatever the method or place, find one that feels peaceful to you.
●● Eat well . Good nutrition will help you keep up your energy and stay healthy. Pack a healthysnack with some fresh fruit. Avoid eating fast food whenever possible.
●● Get plenty of sleep . See a doctor if you have trouble sleeping or feel exhausted during the day.
●● Stay active to sleep better and stay calm . Try to walk, jog, go to the gym, or follow an exercise

DVD. If it’s hard to stay physically active at the hospital, try walking up and down the stairs or
around the hospital or unit.
●● Fill waiting time . Pick a few activities that you enjoy and can do in your child’s room, such as

playing a game, reading a book or magazine, writing, or listening to music.
●● Get feelings out . Write or draw, or choose another way to express your thoughts and feelings.
●● Rely on your faith or belief system . Some people find that cancer brings a new or deeper

meaning to their faith. Others feel that their faith has let them down. Some parents pray,
read religious books, meditate, or talk with spiritual leaders. Sometimes writing in a journal,
reading, or simply being still can help.

Related resources●● Coping with Cancer●● When Someone You Love Is Being Treated for Cancer: Support for Caregivers

54

1-800-4-CANCER (1-800-422-6237) • www.cancer.gov

Helping Your Child to Cope
“Our child met other cancer survivors who are leading
amazing lives despite, or perhaps because of, all they havebeen through. It helps to see yourself in a hero.”
Treatment brings many changes to a child’s life and outlook. Changes to your child’s daily
routine, appearance, and friendships may be especially challenging to deal with. Not being able
to go to school or do other normal activities can make your child feel alone. Long hospital stays
and time away from friends and family can also take their toll.
You can help your child by letting her live as normal a life as possible. Although many activities
may need to be changed, new activities and people can be added in their place. Talking withother families who are going through similar events may also be beneficial.
Here are some ways to help your child:●● Learn what to expect . Ask how the type of treatment your child is receiving has affected

other children, so you can prepare your child.
●● Be open and ready . Encourage, but don’t push, your child to share his feelings. Be there whenyour child comes to you.

●● Take care of yourself . Children sense when their parents are stressed. It helps them copeknowing that their parents and siblings are getting support.

SUPPORT●● Check out activities at the hospital . Learn about events and programs at your child’s hospital.

Changes in appearance“Often a fun cap, a new outfit, or make-up can lift
your child’s spirits.”

It helps to feel good on the outside, even—or perhaps especially—when your child feels down andtired on the inside. Children can be sensitive about how they look and how others respond to them.
Here are some ways to help your child:●● Prepare for hair loss . If treatment will cause your child’s hair to fall out, let your child pickout a fun cap, scarf, and/or wig ahead of time. Try to pick out a wig before the hair falls out,
so you can match it to their hair color. Sometimes cutting your child’s hair short before
treatment helps make hair loss a bit less upsetting.

55

●● Be aware of weight changes . Some treatments may cause weight loss and others may cause

weight gain. Get advice from a dietician so you know what to expect and how you can help
your child prepare for and cope with physical changes.
●● Be creative . You and your child may shop for outfits that your child likes. Sometimes a coolt-shirt or fun hat helps to build self-esteem.

Changes in friendships“Sometimes your child will make a new bestfriend. Sometimes friends your child thought
would be there for them are not. Other times
you may experience the kindness of strangers.”
Your child’s friendships are tested and may change during a long and serious illness. Sometimes,
it may seem as though your child’s old friends are no longer “there for them” or that they don’tcare anymore. Your child’s friends might not know what to say. Or they might be afraid of saying
the wrong thing, so they say nothing at all. Unfortunately, some children speak before they thinkor before they have the facts. No matter the reason, it can hurt when classmates and friends seem
uncaring. Sometimes, it may seem as though your child’s friends are moving on with their lives,and your child is left out. It may help if your child takes the first step and reaches out to friends.
The good news is that your child may make new friends through this experience. Going tosupport groups is one way to connect with others. Some groups meet in person and others
meet online. Your child’s social worker and child life specialist are also sources of support andguidance. For example, they can role-play conversations with your child that may be helpful.
Here are some steps you can take with your child:●● Help your child stay in touch with friends . You can encourage and help your child to connect

with friends through texts, e-mails, online video chats, phone calls, and/or social media sites.
Sometimes a social worker or child life specialist can help your child think through what theywould like to share with friends. If possible and when your child is up to it, friends may beable to visit.
●● Help your child know how to respond . Sometimes people will stare, mistake your child’s

gender, or ask personal questions. Talk with your child and come up with an approach thatworks. Your child may choose to respond or to ignore comments.

“At first Meg’s friends came around often. But as the school
year went on, her friends got involved in their own activities
and visited less. The girls were nice kids. They continued tocall, but it got harder to have things in common the longer
Meg was out of school. Meg found she had more in common
with new friends she made at the hospital.”
56

1-800-4-CANCER (1-800-422-6237) • www.cancer.gov

Changes in feelings“Try to stay upbeat, yet keep it real.
Don’t put on a mask, or your child will
put one on too. And, by the way, it’sokay to be silly too!”
Although over time many children cope well, it’s common for your child to feel anxious, sad,stressed, scared, or become withdrawn, from time to time. Talk with your child about what they
are feeling and help them find ways to cope. You and your child can also meet with a social worker,
child life specialist, or psychologist about feelings that don’t have easy solutions or seem to begetting worse over time. These specialists can help your child manage difficult feelings before
they cause physical problems, such as changes to sleeping or eating habits, anxiety, or depression.
Reassure children that they can always come to you. Listen and be open to what your child has
to say. Some children prefer to express their feelings through drawing, painting, writing, or
playing music.
Try these tips to help your child cope with difficult emotions:●● Find ways to distract or entertain your child . Playing video games or watching movies canhelp your child to relax. Practices such as muscle relaxation, guided imagery, and biofeedback
may also help. See the Practices That Help Children: Integrative Medicine Approaches
section on page 76 to learn more.
child’s health care team and your doctor about the best way to manage these emotions.
However, if you often hide your feelings, your child may also hide their feelings from you.
●● Get help if you see signs of depression in your child . It is normal for your child to feel down

SUPPORT●● Stay calm . Your child can feel your emotions. If you often feel sad or anxious, talk with youror sad sometimes, but if these feelings last for too long and happen on most days, they
may be a sign of depression. Depression is a medical illness that can be treated. Child life
specialists, social workers, counselors, psychologists, psychiatrists and other specialists
are all people who can give your child extra support during this difficult time.

Signs of clinical depression include
If your child has any of these signs, talk with the doctor.
no longer enjoying activities that your child used to enjoy●● changes in eating or sleeping habits (e.g., not sleeping well)●● feeling or acting sad, nervous, sluggish, or tired●● feeling worthless or guilty, even for things that are no one’s fault●● having trouble paying attention●● talking about death or suicide●●57

Changes in schedule (hospital and school)Your child may spend more time at the hospital and less time at school during treatment. Hereare some ways to help your child cope with long stays at the hospital and time away from school.

Hospital stays
Being in the hospital can be difficult for anyone, especially children. It is a different setting, withnew people and routines, strange machines, and sometimes painful procedures.
Try these tips to make your child’s time away from home a bit easier:●● Bring in comfort items . Let your child choose favorite things from home, such as photos, games,

and music. These items can comfort children and help them to relax.
●● Visit game rooms or play rooms . Many hospitals have places where children can play, relax,

and spend time with other children at the hospital. These rooms often have toys, games,
crafts, music, and computers. Encourage your child to take part in social events and otheractivities that are offered at the hospital.
●● Decorate your child’s room . Ask if you can decorate your child’s hospital room. Posters, pictures,and other decorations may brighten the room and help cheer up your child. Window markers
are a fun way to decorate windows. Check to see what items can be brought into your child’sroom, since there are sometimes medical restrictions.
●● Explore new activities . If sports are off-limits, learn about other activities that can help yourchild stay active and have fun. Your child may also enjoy listening to music, reading, playing
games, or writing. Some children with cancer find new skills and interests they never knew
they had.

Missing school
Most children with cancer miss school during treatment. Some children are able to attend fromtime to time, whereas others need to take a leave of absence.
Here are some ways to get the academic support your child needs during treatment:●● Meet with your child’s doctor . Find out from the doctor how treatment may affect your child’s

energy level and ability to do schoolwork. Get a letter from the doctor that describes yourchild’s medical situation, limitations, and how much school your child is likely to miss.
●● Learn about assistance from the hospital and your child’s school . Some hospitals have education

coordinators and others have nurses who will tell you about education-related resources andassistance. Ask about an individualized education plan (IEP) for your child. This is an education
plan for children with certain health conditions or disabilities. It describes what special services
are needed (such as special class placement, extra help with class assignments and tests,
tutoring, and other services such as counseling, speech therapy, and physical therapy) andhow these services will be provided to your child.

58

1-800-4-CANCER (1-800-422-6237) • www.cancer.gov

●● Keep your child’s teachers updated . Tell your child’s teachers and principal about your child’s

medical situation. Share the letter from your child’s doctor. Learn what schoolwork your childwill miss and ways for your child to keep up, as they are able. Talk with people at the schooland hospital to make a plan that meets your child’s educational needs both during and after
treatment.

Going back to school
It’s best for most children with cancer to return to school as soon as they are able. It helps to havea routine and to be with other children. Still, the adjustment may be challenging. Your child may
have fallen behind and have low energy. Friendships may have changed. Children often feel selfconscious about changes in appearance and weight.
Ways to help your child get back into the swing of things at school:●● Learn about back-to-school programs offered by many hospitals. These programs helpclassmates and teachers learn about cancer and make your child’s return to school easier.
●● Talk with your child’s school so they can give your child any needed support. The teachers

can also talk with your child’s classmates and help them welcome your child back. School
counselors and school nurses may also be a big help.
●● Talk with parents of classmates to let them know your child is coming back to school. Plan

times for your child to get together with classmates, to catch up and play.
●● Check out the in-depth information links on educational issues and school for children withcancer listed below.

during treatment, so we wrote up an emergency
action plan and gave copies to his teachers and

SUPPORT“Hong was eager to go back to school, eventhe school nurse.”

Related resources●● School Support (COG)●● Educating the Child with Cancer (ACCO)

59

Helping Brothers and Sisters“When a child is diagnosed with cancer,
everyone in the family needs healing, including
the siblings.” (SuperSibs!)
As a parent, you want to be there for all of your children, but this can be difficult when one ofyour children is being treated for cancer. You may notice that your other children are having adifficult time—but not know what to do. Simply telling your other children that you know how
difficult it is for them, and that you love them, can be comforting.
Even small amounts of time and attention can make a big difference in helping your other children.
This section addresses the needs and feelings of siblings—and suggests ways to help them.
Although many, probably most, siblings cope well—some do not. Be proactive and talk with acounselor at your child’s school, your child’s pediatrician, or a social worker at the hospital. They
can give you advice and help you find local programs, support systems, counseling, and otherservices that may help.
“At times I felt like this situation was harder on our daughter,
Aaron’s sibling, than it was on us. We struggled to have theenergy and time for her. I felt guilty. I realize now that there
were conversations we could have had, and things we could

have done, that would have made a big difference in her life.”

This booklet can help siblings when their brother or sister has cancer.
Although designed for teens, it can also be used with younger children.
In this guide, siblings can:●●learn what has helped other siblings●●

get ideas about how to deal with changes in the family●●

read tips about what to say when friends ask tough questions●●

learn about cancer and how it’s treated

You can view parts of this guide online. You can also download ororder free copies of this booklet.

60

1-800-4-CANCER (1-800-422-6237) • www.cancer.gov

National Cancer Institute

A booklet made for siblings
When Your
Brother or Sister
Has Cancer
A Guide for Teens

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES
National Institutes of HealthHow your well children may feel
We know that siblings of a child with cancer face many difficulties. Many are sad, scared, andconfused. Although many try to be brave and helpful, they may feel left out and alone.
Your child’s siblings may feel:

Scared about what might happen to
their brother or sister

Lonely because they are seeing less of
their parents and friends

Guilty about being healthy andhaving fun

Embarrassed about the way people
stare at or talk about their sibling

Mad that this is happening to their family

Jealous about the attention and gifts
their brother or sister receives

Sad for their brother or sister
Worried that they will get cancer too

Concerned about what is happening
to their family

Alone, neglected, ignored, and left out

Overwhelmed with all of the changes

In addition to these feelings, you may also notice changes in a sibling’s behavior. Are your wellchildren having trouble sleeping? Does your previously outgoing child now seem quiet andwithdrawn? Have you noticed any changes in your child’s grades at school? Does a formerly good
student suddenly stop doing her homework, either to get your attention or because she is having
trouble concentrating?

SUPPORT

Check in regularly with your children to see how they are coping, and talk about any changes
you notice. Ask them what is most difficult about what is happening. Talk about ways you canwork together to help each other. Seek help from your child’s pediatrician for problems that lastor get worse over time.

Ways to help siblings“Talk with your child’s teachers. Get help from other adults
you trust and respect. My neighbors pitched in and madesure homework got done and kids got to their activities.”
These suggestions have helped other families:●● Listen to and talk with your other children . Set aside some time every day, even if it’s just a few

minutes, to spend with your other children. Tell and show them that they are loved. Ask how
they are feeling, even if you do not have an easy solution. Sometimes, just listening is very
important.

61

●● Keep them informed and involved . Talk with your other children about their sibling’s cancer

and tell them, as best you can, what to expect during treatment. If possible, find ways toinclude them in visits to the hospital. If you are far from home, stay connected throughe-mails, texts, and phone calls.
●● Keep things as normal as you can . Arrange to keep your other children involved in school-

related events and other activities that are important to them.
●● Seek out support from health care professionals . Be proactive and talk with your children’s

pediatrician as well as a social worker at the hospital where your child is receiving cancer
treatment. Get suggestions for local programs, activities, and counseling services.
●● Talk with friends, family, teachers, coaches, clergy, and others . Ask key people in your family’s

life to give siblings extra support. Most people want to help and will appreciate being asked.
Keep in mind that some teens may not want people outside the family to know what is goingon at home. Talk with your children if you plan to reach out to others, such as teachers orcoaches, on their behalf.
Some people who can help siblings of a child with cancer may include:●● grandparents, aunts, uncles, cousins●● people from your religious community●● friends and neighbors●● school nurses●● parents of your children’s friends●● guidance counselors at school●● teachers and coaches“Gail and Matt were able to relax and have a goodtime when they went camping with our neighbors.
I think being out in nature, hiking, and relaxing fora weekend was just what they needed.”Related resources●● When Your Brother or Sister Has Cancer: A Guide for Teens●● Depression (PDQ®)

62

1-800-4-CANCER (1-800-422-6237) • www.cancer.gov

Getting Organized“The hospital kept records, and so did we. I used my phoneand computer to keep track of medical tests and treatment
details. I also kept a file on my computer where I entered key
medical information. It came in handy with all the different
doctors my child saw.”
As challenging as it may be, keeping a record of the medicines, tests, and treatments your childreceives is extremely important. So too is organizing medical bills and insurance information.
This section has tips to help you keep track of both medical and financial-related information.

Tracking key medical information
Keep track of the medical care your child receives. Some parents write important information ina notebook. Others prefer to organize this information on their computer or phone. You can also
set up a personal health record (PHR) that allows you to enter, manage, and track your child’s
important medical information. A PHR is similar to an electronic medical record that your child’s
doctor or insurance company may keep, except that with a PHR, you are the one who keeps it andcontrols access to it.

Many parents also keep a journal and calendar. For example, you may keep a journal where you
write down details about side effects your child is having or questions to ask the doctor. Calendars
can be used to track daily events and/or important dates to remember. You can learn more about
these and other eHealth tools in the Related resources section on page 65.

SUPPORT

Increasingly, health care providers, insurance companies, and employers are providing parents
with access to electronic tools. Talk with your child’s social worker or a financial officer at thehospital to learn more about ways to track key medical information. What is important is not theexact tool you use but that you keep key medical information organized and accessible.

Track medical care
On the next page is a chart of the type of information that is helpful to keep handy and up-todate. For example, you should ask for and keep copies of scans, pathology reports, and treatment
plans. Keep these in a file folder, or scan them into images that you save on your computer.

“I was overwhelmed with bills and paperwork, so I asked
my brother for help. He was great at comparing itemized
bills from the hospital with statements from the insurancecompany. He organized all the information, and called thehospital and insurance company when things did not match
up. This was one less thing I had to worry about.”
63

Medical visits
Type of visit/date

Provider’s nameReason for visit

Tests, procedures, and related lab reports (such as CT scans, MRIs, blood counts)
Test or procedure

Date/time

Results

Notes

Treatments (include names and amounts of chemotherapy given, as well as doses andarea(s) treated with radiation therapy, for example)
Treatment(s)Date/time

Side effects

Notes

Date/time

Side effects

Notes

Medicine
Medicine(s) and dose

Other supportive or complementary care received
Type of care received

Date/time

Notes about the care

In addition to tracking ongoing medical care, it’s helpful to keep a sheet with this key information
handy for yourself and others:●● names and contact information for the people on your child’s health care team●● diagnosis information●● treatment plan●● life-threatening health issues for which urgent medical care should be sought

Track medical bills
It is important to understand your health insurance policy and to develop an organized way to
pay and/or follow-up on bills. This means first reading and understanding what is in your healthinsurance policy. Call your insurance company and ask about anything you are unsure about. It
may also help to:●● Talk with a benefits coordinator at your workplace or insurance company. Learn which tests

and treatments are covered by your policy and which, if any, are not covered.

64

1-800-4-CANCER (1-800-422-6237) • www.cancer.gov

●● If the doctor requests a test or procedure that is not covered by your insurance policy, ask thedoctor to write a letter stating why it is needed, and submit this to the insurance company.
If the insurance company does not agree to cover the treatment or procedure, you can go
through the insurance company’s appeals process.
●● Ask to have one case manager at the insurance company assigned to you so you can talk withthe same person each time you have a question or concern.
●● Develop a system to track medical bills. Doing so may prevent billing problems. Most parents

find it helpful to keep paperwork in one place. If you get your medical bills in the mail, putthem in a single folder or binder. If you get your bills online, store them in a file folder on yourcomputer. Some parents find it helpful to create a separate e-mail account to communicate with
their child’s hospital and the insurance company.
●● Organize these items by date:■● bills from the hospital■● explanation of benefits (EOB) statements from your insurance company■● receipts for payments that may be tax-deductible

Match each bill to an explanation of benefits statement from your insurance company. Ask about
any differences between these two documents. You may find it helpful to keep a chart such as theone below.

Date & time Issue discussed

Next steps

SUPPORT

Name and phone
number of person
called (at hospital orinsurance company)

Cancer treatment can be very expensive, even if you have insurance. Talk with the businessoffice at the hospital to learn about different payment options. Find out what arrangements canbe made to pay medical bills. Ask a social worker at the hospital for help with financial orinsurance issues, and to find outside organizations and resources that can help. You can also
learn about organizations that offer financial assistance on our list of Organizations That Offer
Support Services.

Related resources●● Organizations That Offer Support Services(Choose from a list of services.)●● What Is an Electronic Medical Record (EMR)?

65

Survivorship and Follow-up Care“I think that life will always have a little part ofthe cancer experience in it. At first that seemed
like a bad thing, but now I realize it’s taught mea lot. Every day, I see Jack having fun as a kid
again, makes me happy.”
The completion of your child’s cancer treatment is something to celebrate! However, it may also
be a time that brings new challenges. You may worry that the cancer will return. Your child may
struggle to get used to new routines. Some families enter this new phase feeling stronger, whereas
others are more fragile.
Many families are surprised by anxious feelings that arise during this long-awaited time, when
they expected to feel only relief. Instead of this being a time to go back to life as it used to be, it
may be a time of continued adjustment, as you leave the security of the people on your child’s
health care team. Some said the transition to life after treatment took longer and was morechallenging than they thought it would be.
This section has tips and information about follow-up care and survivorship care programs forchildren who have been treated for cancer.

Adjusting to a new normal“I stopped worrying and helped my child get on
with life. I learned to focus on each day and to be
grateful for my son’s healing.”

Treatment has been successful and your child and family enter a new phase of life. You may feel
both joyful and anxious. Your child may still be healing, both physically and emotionally. Your
family may be facing new challenges.
Some children get back into school and home routines easily and quickly. For others, thetransition is more difficult and takes longer. Parents and siblings also go through a period ofadjustment. For example, siblings may have become more independent while you were away at
the hospital. Take time to talk about special things that each person in your family has done
during treatment. This can help to set in motion a positive tone of resiliency for the future.

66

1-800-4-CANCER (1-800-422-6237) • www.cancer.gov

Tips that help families adjust after treatment●● Celebrate . Find special ways to mark the end of treatment. Recognize each person in yourfamily. Celebrate their accomplishments at the hospital or at home with family and friends.
Find a way to thank the people on your child’s health care team.

●● Get informed . Learn about organizations that support survivors and their families in the

Related resources section on page 71.

●● Get emotional support . Talk with a professional counselor or join a support group.
●● Live in the present . Take things one day at a time. Try to focus on today.
●● Help others . Some parents find ways to give back and help others. Parents often say thatgiving back is what helped them the most.

Follow-up care after cancer treatment“It was not only reassuring, it was essential for our daughter toreceive follow-up care from specialists who see children after
treatment for cancer. Each time she goes back for check-ups

and the tests come back normal, we breathe a sigh of relief.”
Get a written copy of your child’s treatment summary and survivorship care plan. Ask forrecommendations to hospitals that offer the type of follow-up or survivorship care that yourchild needs to receive.

Treatment summary
The treatment summary includes both diagnostic and treatment information such as:●● type(s) of treatment received, including the names and doses of all medications, as well as thetotal amounts and sites of any radiation therapy received●● treatment dates●● key reports and scans (such as x-ray, CT scan, and MRI)

LIFE AFTER●● type of cancer, severity (stage, grade, or risk group), date of diagnosis, and pathology report●● side effects and/or complications experienced during treatment●● supportive or palliative care—such as counseling or physical therapy, for example●● identifying number and title of the clinical trial, if your child was in a clinical trial●● names and contact information of key people on your child’s health care team67

Survivorship care plans
A survivorship care plan (also called a follow-up care plan) is developed for each child. This planand schedule is based on the type of cancer and treatment received. For example, some children
may need to return for visits each month for the first year after they have completed treatment.
Others may not need to return as often.
However, all children treated for cancer need to receive follow-up care. This care, as outlined in
the Institute of Medicine’s Cancer Survivorship Care Planning fact sheet, includes:●● exams and tests/procedures to check for the recurrence or metastasis of cancer, and aschedule of when they are needed●● care and support to manage any long-term side effects and check for late effects●● psychosocial support or counseling, and referrals as needed●● legal aid or financial support, and referrals as needed●● referrals to, and coordination with, specialists such as cardiologists, education specialists,

endocrinologists, physical therapists, and psychologists and to appropriate treatments, clinicalstudies and rehabilitation specialists●● recommendations for healthy behaviors, such as advice regarding nutrition and physicalexercise●● family-based care, education, and outreach to your child and family

Survivorship care programs
Follow-up care clinics (also called long-term follow-up clinics or survivorship clinics) provide
follow-up care for children who have been treated for cancer. At these clinics, your child will see
specialists (in cardiology, endocrinology, fertility, nutrition, psychology, and/or pulmonology, forexample) who will monitor your child’s health. These clinics are usually found within hospitals.
If the hospital where your child was treated does not have such a clinic, ask your child’s doctor torecommend one. You can also refer to the Children’s Oncology Group’s Directory of Services tofind a hospital that offers services late effects of treatment.

Long-term and late effects“We noticed that schoolwork was difficult for Meg. Her

nurse at the survivorship clinic told us about testing andsteps to get support from our child’s school.”

Although many side effects go away once treatment has ended, long-term side effects, such as
fatigue, may take some time to go away. Other side effects, called late effects, may not occur untilmonths or even years after treatment.

68

1-800-4-CANCER (1-800-422-6237) • www.cancer.gov

Factors that affect the risk of late effects
The risk of late effects depends on factors related to the type of cancer your child had, how it was
treated, as well as personal factors. These include:●● cancer-related factors such as the type of cancer, where it was in the body, and how it

affected tissues and organs●● treatment-related factors such as the type and dose of treatment(s), or the type of surgery●● patient-related factors such as your child’s gender, age at diagnosis, length of time sincediagnosis/treatment, personal and family health history, and health habits

Types of late effects
Knowing what symptoms to be aware of and when they may occur can help you plan for theneeds of your child. Not knowing what to expect can cause anxiety for some parents. However,for others, knowing about late effects that may or may not happen to their child in the future canbe overwhelming. Many parents find it helpful to ask their child’s doctor what late effects to focus
on at each step of their child’s recovery.
Late effects may be physical, emotional or cognitive.
●● Physical late effects involve changes to organs, tissues, and/or body functions. They may

affect your child’s growth and development. Some children who have been treated for cancer
have many physical late effects, whereas others have relatively few. As you talk with yourchild’s doctor to learn what to expect, you can learn more about treatments that may increase
the risk of physical late effects in Late Effects of Treatment for Childhood Cancer.
●● Emotional late effects include changes to your child’s mood, feelings, and actions. Many●● Cognitive late effects include changes in your child’s ability to memorize, learn, and think.

These types of late effects are more likely to occur in children who’ve had certain cancers
such as brain and spinal cord tumors, head and neck cancers, and some types of leukemia,
like ALL. Treatments such as radiation therapy to the head and certain types of chemotherapy
also increase the risk of cognitive late effects. These late effects are also more likely in children
who were very young during treatment, who received very high doses of treatment, andwhose treatment lasted for a long time. Children with cognitive late effects may have a moredifficult time:

LIFE AFTER

children are very resilient after cancer treatment. Others experience social and/or emotional
problems. If your child is not sleeping well and no longer enjoys activities that he once did it
is important to talk with your child’s doctor about having your child evaluated for depression.
Some children develop post-traumatic stress disorder (PTSD). This anxiety disorder arises inreaction to physical injury or severe mental or emotional distress. Symptoms of PTSD may
include having flashbacks about diagnosis or treatment, avoiding places that are reminders of
the experience, and being fearful, irritable, unable to sleep, or having difficulty concentrating.
Ask your child’s health care team to suggest resources for mental health support in your area.

■● memorizing or remembering69

■● learning (handwriting, spelling, reading, vocabulary, and/or math may be particularly

challenging)■● thinking (including concentrating, completing work on time, doing work that involves

multiple steps, problem solving, and planning)

Questions to ask when your child has completed treatment
About treatment●● Who should we talk with to get a comprehensive record of treatment(s) and medications that

our child received during treatment?

About practical steps to take at home●● What health problems in our child should we be aware of?

●● Who should I contact if health problems occur?

●● Does my child need to continue taking any medicine(s)? If so, for how long?

●● What types of activities may help my child? Are any activities not recommended?

●● What vaccines should my child receive? When should they be given?

About follow-up care (plan and schedule)●● Who should I talk with to get a follow-up care plan and schedule for my child?

●● What medical experts should my child see for follow-up care?

●● What tests will be done during follow-up care visits? How often and for what reason?

●● Where should my child go for follow-up care visits?

●● What is the schedule for these visits?

70

1-800-4-CANCER (1-800-422-6237) • www.cancer.gov

About possible long-term and/or late side effects●● Is my child at increased risk of having long-term side effects? If so, which ones and how canthey be managed?
●● Is my child at increased risk of developing late effects later in life? If so, which ones? How likely

are these to occur? How long after treatment might they occur?
●● What type of specialists should my child see to manage these effects?

About support and coping●● What survivor support groups are available for my child? For our family?

●● What are the benefits to my child of receiving professional counseling? Is this something you

recommend for my child? Why or why not?

Related resources●● Follow-up Care After Cancer Treatment●● Late Effects of Treatment for Childhood Cancer (PDQ®)●● Introduction to Long-Term Follow-Up After Treatment forChildhood, Adolescent, or Young Adult Cancer (COG)●● Long-Term Follow-up Guidelines (COG)●● From Cancer Patient to Cancer Survivor: Lost in Transition (IOM)

LIFE AFTER71

If Treatments Aren’t Working“It felt like we were giving up, but I knew we weren’t. The
doctors were honest with us. They told us that Devon was
not going to live much longer. I’m glad we didn’t put ourson through treatment that would have made him feel evenworse, during the precious time he still had.”
Although treatment helps many children with cancer, it may not work for all children. If the cancer
your child has cannot be cured or controlled, it may be called advanced cancer or end-stage cancer.
This section suggests ways you can help your child and make choices about end-of-life care.

Ways to help your child
There are many things you can do to help your child. Exactly what you choose to do, and when,is a very personal choice. Here are suggestions that have helped others during this difficult time:●● Ask for help and support . The people on your child’s health care team have helped otherfamilies facing similar situations. Talk with them to learn what can help your child and familycope with end-of-life decisions, concerns, and emotions.
●● Be honest with your child . Because you want to protect your child, it may be hard to know

how to talk with him about the fact that treatment is not working. Work with your child’s
health care team to get truthful information that your child can understand. Talking honestlywith your child, as hard as this may seem, can actually help your child.
●● Help your child to open up . Your child may be picking up cues from friends, family, andothers that treatment is not going well. Some children choose to remain silent about what
they know or suspect because they do not want to upset you or see you cry. Children may try
to protect you from their own worries or fears. Letting your child know that she can shareanything with you can help her feel less scared and alone.
●● Let your child have fun . Take cues from your child. If he feels up to doing something, encourage

it—and if he doesn’t, let that be okay too. If there is a birthday or holiday that your child is
looking forward to, feel free to celebrate that day earlier. For example, it may mean celebrating
Christmas in July. Talk with your child about what would be meaningful to her. There are wish
fulfillment organizations that may be able to help your child’s wishes and dreams come true.
●● Share your spiritual beliefs . Your spiritual beliefs may comfort and help your child, just as

they do you and others in your family. Some parents find it helps to have a member fromtheir religious community talk with their child and family.
●● Keep making memories . Talk about fun times and special memories. Talk about the many people

that your child means so much to. If your child feels up to it, write, draw, or make a photobook together. Talk about special things your child has done that people will always remember.
Some children choose to write letters or give some of their toys to the people they love.

72

1-800-4-CANCER (1-800-422-6237) • www.cancer.gov

●● Take it one day at a time .

As you go through this time,
remember to care for yourself.
You have come a longway and you are doing anamazing job. You are stronger
than you think. Choose to
make the most of each day,living fully in the present—
and in so doing, helping
your child to do the same.
Sometimes simple things are
the most meaningful, forboth you and your child.

Planning guide
Many teens find it hard to be open about their preferences,
for medical care. Honest conversations can help teens think
through and express their thoughts about what they mostwant. Voicing My Choices™ is a planning guide that may
help with difficult conversations about end-of-life issues.
Topics include treatments your child may or may not wantto endure, where he would want to be if the end-of-life
were near, and how your child wishes to be remembered.
Having a guide to help share thoughts, hopes, preferences,and wishes can help you and your child make decisions thatreflect what is most important to your child.

“Treatment wasn’t working anymore for our son. The
doctor told us that he would not survive. That was theworst day of my life. Still, I knew I had to be strong.
When we talked with Ryan he asked if we would keep
running in a race that gives funds to his hospital. Ryanused to love running in this race, even before he hadcancer. So now, each year, we continue to run.”End-of-life care

When children have a terminal diagnosis (usually defined as having a life expectancy of 6months or less) and are approaching the end-of-life, they may be eligible to receive hospice care.
This type of care provides medical, emotional, and spiritual support. Hospice care helps yourchild to be as comfortable as possible near the end-of-life, when treatment is no longer controllingthe disease. It focuses on caring, not curing. However, if your child’s health improves, hospicecare is discontinued and active treatment resumes.

LIFE AFTER“No words really for this time. It was hard for all of
us. Somehow, the doctors and nurses helped us cometogether so that our son knew how deeply he was,and is, loved.”

Hospice care is very individualized
Hospice care may be given at your home, in the hospital, or in a hospice center. Hospice services
include medical and nursing care, home health care services, medical supplies and equipment,
drugs to help manage symptoms, spiritual support, counseling, social work services, and respitecare, for example. Your family is also an important focus of hospice care. Your child’s hospice73

team may include doctors, nurses, home health aides, social workers, clergy or other counselors,
and trained volunteers. A hospice team member is on call 24 hours a day, 7 days a week.
More detailed information about end-of-life care is included in the Related resources section
below.

Questions to ask about end-of-life care
About active treatment●● What is the best possible result if we continue with active treatment? What is the most likely

result?
●● Are there other active treatments you would recommend, with possibly better outcomes?

●● How will continuing active treatment affect my child’s quality of life?

About end-of-life care●● What is end-of-life care? What is hospice care?

●● What type of care would you recommend for my child? Why would you recommend it?

●● Would you help me talk with my child about this type of care?

●● What quality of life will my child have during end-of-life care?

●● What care will be given to help my child be comfortable? Will my child be alert?

●● What educational resources would you recommend to help our child and family?

Related resources●● End-of-Life Care for People Who Have Cancer●● Making Decisions about End-of-Life Care (COG)●● Palliative Care: Conversations Matter®
●● Voicing My Choices™

74

1-800-4-CANCER (1-800-422-6237) • www.cancer.gov

Looking Forward“Some of the carefree innocence of childhood is gone,
but in its place our daughter has gained wisdom, grace,and courage.”
It may be hard to imagine at first, yet once your child completes treatment, you will likely findyourself thinking less and less about cancer. Over time, the current demands and joys of life willgrow in importance. Some memories will fade. Others will remain. Some parents say they stillworry about cancer. Others say it is a worry they choose not to nourish.
You and your family may appreciate life more deeply. You may find yourself reflecting on thekindness of family, friends, and even strangers. You may think about how brave your child was.
You may remember how you relied on your faith and courage to get you through.
As the months and years pass, and your child stays healthy, cancer no longer takes center stage.
Still, you may choose to remember certain days, such as the day of diagnosis or the last day oftreatment—and do something special on those days. You can choose to remember and think backin different ways. Some families spend a day in the park. Others write, get together with friends,
take a trip, or do something for others. There is no right or wrong way—there is only the way thatfeels and works best for your child and family.

“While our family would never have chosen this path, once westopped fighting it and faced it together, we somehow found
our way. We came out changed. Stronger.”

LIFE AFTER75

Practices That Help Children:
Integrative Medicine Approaches
Integrative medicine approaches can help your child feel better during treatment. This care isgiven in addition to standard medical treatment which may include chemotherapy or radiation
therapy. It does not replace these treatments. For example, your child may receive acupuncture tohelp lower side effects caused by cancer treatment.

“Our child’s social worker explained that complementary approaches were
given in addition to, not instead of, treatment. We were glad these wereused to help our child during treatment.”

Integrative practices that may help children
during treatment
Your child’s health care team will talk with you about ways to help your child cope during
treatment. Based on your child’s age, symptoms, and preferences – some practices that may besuggested include:●● Acupuncture is the technique of inserting very thin needles (about the thickness of a hair)through the skin at specific points on the body to control pain and other symptoms. It isbased on the belief that vital energy flows along pathways in the body and that healthproblems occur when this energy is blocked. Acupuncture does not hurt, and even children
who are afraid of needles can get acupuncture. It may help lower fatigue, pain, and nausea.
Learn more about acupuncture.
●● Art therapy uses the making of art and a child’s response to art to improve her physical,

mental, and emotional well-being. Art therapy is sometimes used together with psychotherapy.
Your child can make art alone or with an art therapist. Art therapy may help lower stress, pain,
and fear. It may improve communication and social interactions.
●● Biofeedback is a method that helps children learn how to control some bodily functions, suchas their heartbeat, blood pressure, muscle tension, sweating, and temperature. While learning
this technique, your child will be connected to a machine that monitors these functions. Oncechildren learn how to control their body, they may use biofeedback to lower pain and to relax.
Learn more about biofeedback and other relaxation techniques.

76

1-800-4-CANCER (1-800-422-6237) • www.cancer.gov

●● Cognitive behavioral therapy (CBT) is a type of psychotherapy that helps children change

the way they think and feel about certain problems and situations. It is used to treat mental,
emotional, personality, and behavioral problems. Learn more about cognitive behavioral
therapy and other psychotherapies.
●● Deep breathing is a relaxation technique that can help boost oxygen levels, which can help

your child to relax. Your child takes deep, slow breaths in through the nose, and breathes
out through the mouth. Small children can practice deep breathing by blowing bubbles.
These exercises may help lower stress and increase relaxation. Learn more about relaxation
techniques, including deep breathing.
●● Distraction therapy is a method that can help a child take her mind off painful or unpleasantthings by providing a pleasant sensation or interesting activity to capture her attention. Babies
can be touched, rocked, or rubbed. Children can play games, watch a movie, read, or do otheractivities that help them focus on something other than the procedure or the discomfort it may
cause. Distraction therapy may help lower pain, fear, and nausea. Learn more about distraction.
●● Guided imagery (also called visualization) is a technique in which your child focuses on

positive images (such as a fun place or experience) in her mind. These pleasant images canreplace distressing thoughts. Guided imagery may help lower stress, pain, and nausea—
and give your child a sense of well-being. Learn more about guided imagery and otherrelaxation techniques.
●● Hypnosis (also called therapeutic hypnosis or hypnotherapy) is a trance-like state of deep

relaxation. While under hypnosis, with the assistance of a clinical hypnotherapist, your child
may feel calm, relaxed, and more open to suggestion. Therapeutic hypnosis may help lower
stress, anxiety, and pain. Learn more about hypnosis.
●● Laughter therapy (also called humor therapy) is actually a type of therapy that can help

muscles relax and make a child feel less scared. Laughter also causes the body to release

endorphins, which can help to lower pain. Books, songs, and movies may also be used as partof laughter therapy to lower stress, pain, and fear.
●● Massage therapy is a therapy that rubs, kneads, and/or touches muscles and soft tissues. It

increases blood flow and may be used to lower pain and stress. Parents can be taught to give
massages, or a massage therapist can give a massage. If your child bruises easily or has
peripheral neuropathy, check with the doctor first. Learn more about massage therapy.
●● Meditation or prayer may help children to relax their minds and bodies, which can improvetheir overall sense of well-being. They may also lower stress, pain, anxiety, and depression
and give your child a sense of hope, peace, and optimism. Learn more about spirituality incancer care.
being. It is being studied in the treatment of several cancer-related problems and otherconditions. Learn more about music therapy.

RESOURCES●● Music therapy is treatment that uses music to help relieve pain or stress and promote well-

77

Questions to ask about practices that may help yourchild feel better●● How could this integrative medicine approach be used to help my child?

●● Is this practice offered at this hospital? If not, where can my child go to receive it?

●● Where can I go to learn more about this approach or practice?

●● How much does it cost? Is the cost covered by my health insurance?

Related resources●● National Center for Complementary and Integrative Health●● Complementary and Alternative Medicine

78

1-800-4-CANCER (1-800-422-6237) • www.cancer.gov

Medical Tests and ProceduresThis section has information about blood tests, scans, and other procedures. It also describes
medicines that may help your child to relax or sleep during a procedure.

“Blinky went everywhere with Sofia. Sometimes
her child life specialist used Blinky as the patient to
explain what would happen. Our daughter also liked
telling Blinky about a procedure.”

Blood tests
Blood tests are used to help diagnoseconditions and monitor your child’s
health.
●● A blood chemistry study measures

the amounts of certain substances
made in the body. A high or low
level of a substance can be a signof disease.

Different types of blood cells
Blood stem cell
Myeloid stem cell

Myeloblast

called a blood smear) gives
information about the number
and shape of different types ofblood cells.

Red bloodcells
Platelets

Neutrophil

Basophil

B lymphocyte
NaturalT lymphocyte killer cellWhite blood cells© 2015 Terese Winslow, U.S. Govt. has certain rights

Bone marrow is the soft, sponge-like tissue in the center ofmost bones. It makes these types of cells:●● Platelets (also called thrombocytes) are tiny pieces ofblood cells that help form blood clots or stop bleedingand help wounds to heal. When platelet counts are
low, your child may bleed or bruise more easily.

●● Red blood cells (also called RBC) contain a protein

called hemoglobin that carries oxygen to all parts of the
body. Low red blood cell levels may cause anemia andyour child may be very tired, short of breath, and dizzy.

●● White blood cells (also called WBC or leukocytes)

help the body to fight off infection and diseases.
Different types of white blood cells include neutrophils,
lymphocytes, monocytes, eosinophils, and basophils.
When white blood cell counts are low, it is hard forthe body to fight infection.

RESOURCES●● A peripheral blood smear (also

Lymphoblast

Granulocytes
Eosinophil●● A CBC with differential (also called

blood cell count with differential)
measures of the number of red
blood cells, white blood cells, andplatelets in the blood, including
the different types of white blood
cells. A CBC also measures theamount of hemoglobin (substancein the blood that carries oxygen)and the hematocrit (the amountof whole blood that is made up of
red blood cells) to help diagnoseand monitor many different
conditions, including anemia
and infection.

Lymphoid stem cell79

●● Absolute neutrophil count (also called ANC) measures the amount of a type of white blood

cell called a neutrophil. When the neutrophil count is low the body’s ability to fight bacterial
infections is reduced. A low neutrophil count is called neutropenia.
●● Blood chemistry study measures the amount of certain substances in the blood, such as sodium,

potassium, fats, and proteins. An abnormal (high or low) amount of a substance can be a signof disease or a side effect of treatment.

Scans, tests, and procedures
These scans, tests, and procedures are used to make a diagnosis and to check your child’s health:

Why the test is done What to expect during the test
An angiogram is a procedurethat looks at blood vessels andthe flow of blood.

Your child will lie on an x-ray table or in a CT or MRI
machine while an image is taken of the blood vessels andblood flow. A contrast dye is injected in the blood vessel tosee if there are any blockages.

A biopsy is a procedure to
remove cells or tissues in order
for a pathologist to study or
perform other tests and to issue
a pathology report.

There are many different types of biopsy procedures.
Common types of biopsies include:●● an incisional biopsy removes only a sample of tissue●● an excisional biopsy removes an entire lump or suspicious

area●● a needle biopsy removes a sample of tissue or fluid witha needle.
Learn more about a biopsy.

Bone marrow aspiration is aprocedure in which a small
sample of bone marrow (thesoft, sponge-like tissue in thecenter of most bones thatmakes white blood cells, redblood cells, and platelets) isremoved. The sample is usuallytaken from the hip bone,breastbone, or thigh bone andsent to a lab to be looked atunder a microscope. It is used
to diagnose some cancers,
infections, and blood disorders.

80

A small area of skin andthe surface of the boneunderneath will be numbedwith an anesthetic. Then aspecial wide needle is inserted
into the bone. A sample ofliquid bone marrow isremoved with a syringe
attached to the needle.

Bone marrow needle

Bonemarrow

Hip
bone© 2015 Terese Winslow, U.S. Govt. has certain rights

This procedure may be done at the same time as a bonemarrow biopsy. Learn more about bone marrow aspiration.

1-800-4-CANCER (1-800-422-6237) • www.cancer.gov

A bone scan is a procedure thatchecks for abnormal areas ordamage in the bones. It may be
used to diagnose bone tumors
or cancer that has spread to thebone. Bone scans may also be
used to help diagnose fractures,bone infections, or other bone
problems.

Before this test, a verysmall amount of radioactive
material is injected into avein and travels throughthe blood. The radioactive
material collects in thebones and is detected bya scanner (instrument thattakes pictures of the insideof the body).

© 2015 Terese Winslow, U.S. Govt. has certain rights

Your child will lie still while a scanner moves above andbelow your child. The scanner does not touch your child.
Learn more about a bone scan.
A CT scan (also called CAT scanor computerized tomography)
is a procedure that is used
to make a series of detailed
pictures of areas inside thebody. It uses a computer
linked to an x-ray machine.
The pictures are taken fromdifferent angles and create 3-D
views of tissues and organs.
A CT scan may be used tohelp diagnose disease, plan
treatment, or find out how welltreatment is working.

Your child will lie on a tablethat slides into a donut
shaped scanner. The CT
machine moves back andforth, taking pictures.
Sometimes a special dye
is injected into a vein or
swallowed to help organs or
tissues show up more clearly.
Learn more about computed tomography (CT) scans.

An MRI (also called magnetic
resonance imaging) is used
to help visualize tumors
and other tissue changes. It
uses a powerful magnet andradio waves to create detailed
pictures of organs and tissues.
These pictures can show thedifference between normal
and diseased tissue. An MRI is
especially useful for imaging
the brain, the spine, the soft
tissue of joints, and the insideof bones.

Your child will lie still on atable that is pushed into along, round chamber. The
MRI machine may makeloud thumping noises andrhythmic beats. If yourchild is uncomfortable inclosed spaces, ask if thehospital has an open MRI
machine. Sometimes a special dye is injected into a vein to
make any cancer cells show up brighter in the pictures. Learn
more about MRI scans.

© 2015 Terese Winslow, U.S. Govt. has certain rights© 2015 Terese Winslow, U.S. Govt. has certain rights

RESOURCES81

A PET scan (also called positronemission tomography scan)
is a procedure used to makedetailed computerized picturesof areas inside the body where
glucose is taken up. Because
cancer cells often take up more
glucose than normal cells, thepictures can be used to findcancer cells in the body.

Before this test, a small
amount of radioactive glucose
is injected into a vein. During
the procedure, your child will
lie still on a table, whichmoves back and forth througha scanner that makes pictures.
Learn more about a PET scan.

A spinal tap (also called
a lumbar puncture) is aprocedure in which a thinneedle called a spinal needle
is put into the lower partof the spinal column tocollect cerebrospinal fluid for
examination or to give drugs.

Your child will receive local
anesthesia to numb the skinand an area on the lower back.
Spinal cord
During this test, your childwill either lie curled up on
Cerebrospinal fluid
their side or be seated andSpinal needle
leaning over with their headon a pillow. Your child may
have to lie flat for several
hours after the test. This
procedure may be painful for a short time. Learn more about
cerebral spinal fluid (CSF) collection.

© 2015 Terese Winslow, U.S. Govt. has certain rights© 2015 Terese Winslow, U.S. Govt. has certain rights

A tumor marker test measures
the amount of substances
called tumor markers in tissue,
blood, urine, or other body
fluids. Tumor markers are
made in higher amounts bycancer cells. This test may be
used together with other tests
to help diagnose cancer, plan
treatment, find out how welltreatment is working, or tell ifcancer has come back.

82

A sample (such as a stool, blood, urine, or other bodily fluid
or tissue, depending on the marker to be measured) will betaken and sent to a lab for testing. Learn more about tumor
markers.

1-800-4-CANCER (1-800-422-6237) • www.cancer.gov

An ultrasound is a procedurethat uses high-energy soundwaves to look at tissues andorgans inside the body. The
sound waves bounce offstructures in the body, making
echoes that a computer uses toform pictures of the tissues andorgans on a computer screen(sonogram). During treatment
for cancer it may be used tohelp make a diagnosis and to
guide biopsies.

Your child will lie on a table
while a technician slowly
moves a wand, with warm
clear gel on it, on the skinover the part of the bodybeing examined. Learn more
about ultrasound.

SonogramTransducer© 2015 Terese Winslow, U.S. Govt. has certain rights

X-ray is a type of radiation used A technician will position your child and direct the x-ray
to make pictures of bones andother structures in the body.

beam to the appropriate part of his body. Your child will needto stay very still and may need to hold his breath when theimages are taken. Learn more about an x-ray.

Sedatives and anesthesia
Each child has unique needs based on their age and the type of procedure. Your child’s healthcare team will talk with you about what is recommended for your child. Children may be given
medicine (called a sedative) to help them relax, stay very still, or sleep during a procedure.
Sometimes a type of anesthesia may be given. Types of anesthesia include:●● Local anesthesia causes a loss of feeling in one small area of the body. It may be put on the skinto lessen pain, for example.
●● Regional anesthesia causes a loss of feeling in one part of the body, such as an arm or leg.
●● General anesthesia makes your child lose feeling and awareness. During general anesthesia,

your child will be in a very deep sleep.

RESOURCES83

Questions to ask about medical tests and procedures●● What test(s) or procedure(s) will my child have?

●● What is the purpose of this test?

●● Is there anything that my child needs to do to prepare?

●● What will happen during the test?

●● What will be done to help my child cope emotionally before and during the test?

●● What are the risks?

●● Where will the test be done?

●● How long will it take? Will my child be awake during the test?

●● Will it hurt? If so, how will pain be prevented or lowered?

●● When will we know the results?

Related resources●● Understanding Laboratory Tests●● Anesthesia●● Blood84

1-800-4-CANCER (1-800-422-6237) • www.cancer.gov

Scan this QR code
to see an online versionof this publication:

Or visit us online atwww.cancer.gov/guide-for-parents

NIH Publication No. 15-2378
September 2015