What is cancer?
Cancer is a disease that happens when cells of the body begin to grow abnormally and fail to do what they are supposed to do. This growth of abnormal cells grows out of control, leading to tumors and interfering with the work of normal cells. For example, suppose a cancer cell that started out working as part the lung stops working and just creates more non-working cells. After awhile a big enough group of abnormal cells can make it harder for your lung to work, causing you to wheeze and have problems breathing. Untreated, it can lead to death.
Cancer can occur in any part of the body. There are as many types of cancer as there are types of cells in the body. Cancer starts because something causes abnormal cells to develop, and these eventually have out-of-control growth. Cancer in children is often very different than in adults, and it is rare for children to have cancer that is related to things that they do (like smoking). How common they are also differs. Even when the type of cancer in children and adults is the same, the cancer often acts very differently. Thus, a cancer in children is often treated differently from the same type of cancer in adults.
One reason why cancers are different in children is that children are still growing and changing. In children, parts of the body that are undergoing rapid normal change are often at greater risk for cancer. Because children are growing and developing, many kinds of childhood cancer are very aggressive, meaning that the cancer grows very rapidly. While this sounds quite scary, this rapid growth of cancer cells in children often makes the cancer easier to treat, and outcomes generally are much better than with adults with the same kinds of cancer.
Cancer and its treatment can cause many problems in a growing child, including problems with development (how children grow up). Treatment of cancer can be very difficult, and can lead to mental, emotional, social and physical problems during treatment. The most common problems of childhood cancer treatment include loss of hair, weight loss, nausea and vomiting, and low blood counts leading to a risk of infection, fatigue or bleeding. Other common problems include mood swings, bad behavior and sometimes difficulties remembering, paying attention or doing things that require fine-motor coordination. Some problems are directly related to the treatment being given; in those cases when the treatment stops, the problems disappear, and the child returns to a normal lifestyle. Other problems may show up slowly over time even after treatment. These problems are known as “late effects,” and are generally problems that will last for a long time, sometimes for the child’s lifetime.
Learning problems can happen for about half the children treated for cancer. Make sure to have your child evaluated (tested) by a qualified neuropsychologist or psychologist experienced in working with children with cancer.
Cancer can affect a child’s memory, ability to pay attention and hand-to-eye coordination (such as the ability to catch and throw a ball). Some kinds of cancer — for instance, brain tumors — also can affect the ability to learn to speak and make conversation. Pay attention to these kinds of problems early, because some things can help.
The most common kinds of cancer in children are:
- Leukemia: Cancer of the blood and bone marrow (the soft tissue on the inside of bones that makes blood cells).
- Brain tumors: Solid tumors (lumps, or masses, of abnormal cells) in the brain and spinal cord (spine).
- Lymphoma : A tumor involving lymph nodes. (Lymph nodes are glands that play an important part in your body’s defense against infection. Sometimes they are called glands.)
Some other kinds of cancer or solid tumors:
- Bone cancers (Osteogenic sarcoma, Ewing’s).
- Kidney cancer (Wilm’s Tumor).
- Muscle cancer ( Rhabdomyosarcoma).
- Peripheral nervous system cancer (Neuroblastoma).
- Eye cancer (Retinoblastoma).
What can I do to help my child?
You have made an important first step by reading more information on cancers. Talk with other parents of children with cancer. They have gone through what you are going through now and may be able to help. Below is a link to find a cancer-support group near you.
Dial 211 to find cancer support groups
Below are some checklists of things you can do to help your child. Remember that you are not alone.
IN THE STATE OF FLORIDA:
Contact Children’s Medical Services (CMS) for medical care for my child:
Children’s Medical Services
Main Phone: (850) 245-4200
Get my child evaluated (tested):
It is important to get your child evaluated problems caused by the cancer or the treatment. Either one can affect your child’s learning or reasoning (intelligence). This should be done by a neuropsychologist or psychologist experienced in working with children with cancer. You also should have your child tested regularly by professionals at cancer treatment centers. Because children can have problems even years after cancer treatment has ended. Ask your child’s doctor to help in arrange this.
Work with my child’s service providers:
A service provider is anyone who works with you and your child such as your pediatrician, a physical therapist, a teacher, a principal, a social worker or any professional. You know more about your child than anyone else and are the main influence in your child’s life. Tips for speaking with service providers:
- Feel free to ask questions and make comments. Be specific about what you know about your child and what you want and need for your child. Be honest about what you expect, any worries you may have, or about anything you don’t understand.
- If you think your child needs something in particular, keep asking until you get it or until you understand why it is not needed.
- Work with professionals in your school to write your child’s IEP that reflects your child’s needs and abilities. Be sure it includes such related services as speech-language pathology, physical therapy and occupational therapy if your child needs these. Don’t forget assistive technology either.
Get more information:
Visit more websites. Read a book. Watch a video on cancer. Include your child and family. Talk with another parent or a support group.
I will have my child wear a Medic Alert bracelet:
Thus, in case of an emergency, vital information on your child’s condition is available.
Become an advocate when my child needs education accommodations:
Get training to be an education advocate.
This means working for your child’s rights in the school system. Your child is guaranteed the right to a free and appropriate public education. For children with cancer, this means that your child is entitled to attend school just like all other children. Your child may need the supports found through special-education classes, Section 504 accommodations or hospital/homebound programs.
If an evaluation (test) of your child shows that he or she could benefit from special education, you should talk with your child’s school.
Your child may need a Section 504 educational plan to make sure that educational and health care needs are met. Section 504 is part of the Rehabilitation Act of 1973. This federal law allows qualified children with chronic illness to have special services or supports in their schools. For more information on Section 504, see this website: http://www.hhs.gov/ocr/504.html
If your child’s medical problems or treatment require hospital care, you may need to use your school system’s hospital or homebound service to provide an education for your child. You may request this service if your child is or will be absent for 15 or more school days. Talk with your child’s school to see about how to arrange for this service.
Arrange a special lesson for my child’s classmates about coming back to school:
Coming back to school after treatment for cancer can be hard on your child and his or her classmates. Work with your child’s teacher. Ask if your child can help teach classmates about the disease and its treatment. That also can reduce teasing or social problems for your child, and gives control back to your child by letting him or her be the expert (and, hence, give your child a sense of self-confidence). It also opens the door for your child to talk with classmates, helping your child overcome feeling shy or isolated from peers.
Help my child with self-esteem (self-image):
Some children feel low self-esteem because cancer or its treatment can cause side-effects that makes them feel different than other children, e.g., missing hair, stitches, feeling sick. Help your child by:
- Encouraging him or her to talk about feelings.
- Listening when he or she talks to you. Show your child that you think the feelings and problems are real.
- Seeing a therapist or psychologist. Sometimes a child may be able to talk with such people and share feelings that they might not be able to with a parent or family member.
- Working with your school and other professionals to meet your child’s education and social needs.
Talk with my child’s teacher often:
Keeping your child’s teacher updated on your child’s medical condition is very important. Here are a few things you can ask your child’s teacher to do to make your child’s school time more successful. Ask the teacher to:
- Provide a comfortable place for your child to rest, and provide breaks for your child when needed.
- Watch your child’s ability to pay attention to things.
- Consider shortening your child’s school day if necessary.
- If your child will be out of school, arrange for assignments to be sent home. Or arrange for a teacher to come to your home or to the hospital if it will be 15 or more days before your child can go back to school.
Make sure my child has a trusted adult with whom to talk:
Sometimes children talk more easily with adults who are not their parents, usually because children do not want to worry parents. A therapist, a psychologist or a teacher often can have a conversation with your child that your child may not share with you.
Is there a cure for cancer?
Today, nearly 80% of children diagnosed with cancer become long-term survivors, and the majority are considered cured. An early and correct diagnosis will help determine the best treatment and greatly improve a child’s chance of survival. New medical treatments and technologies enable more children to survive each year.
(McDougal, 1997) (See the Cancer Chart for details)
Why does cancer happen?
We don’t know what causes most childhood cancers. Many kinds of cancers in children occur very early in life. Some of these cancers are the result of a genetic predisposition, meaning a cancer runs in a family. Radiation exposure (x-rays) can be one cause of certain types of childhood cancers. Unlike cancers in adults, most cancers that children get aren’t related to bad habits like smoking, drinking alcohol, a bad or unhealthy diet or not enough exercise.
American Cancer Society 2005
Do many children have cancer?
Childhood cancer is pretty rare — only about 2% of all cancer cases happen to children. Each year in the U.S., about 12,500 children and adolescents are diagnosed with cancer. Most will survive five years or more after the cancer is found. Because treatment of childhood cancer has been so successful, the number of survivors grows every year. By 2010, an anticipated 1 in every 900 adults in the United States will be a survivor of childhood cancer.
(McDougal, 1997) (See the Cancer Chart for details)
What does this mean for my child’s health?
Treatment of cancer is very complicated depending on the type of cancer the child has, where in the body it’s located, and whether it can spread to other parts of the body. Other factors that can make a difference in treatment options include the age of your child and your child’s blood count. (This is the number of white and red blood cells in the blood, helping doctors to judge how well your child can fight infections and illness).
Common treatments for cancer include surgery, radiation therapy, chemotherapy and bone marrow or stem cell transplantation. Some other new treatments use cold laser light, gene therapies or immunology.
Cancer treatment can cause short- and long-term effects in all areas of your child’s life — health, family, activities, school performance and overall quality of life. Side-effects from the cancer treatments can include:
- Pain from treatments.
- Becoming anxious about future treatment, especially if they involve needles or getting shots or taking drugs that make children sick or lose their hair.
- Feeling tired or lack energy, even years after the last treatment.
- Not growing or developing as fast as others.
- Via chemotherapy, hair loss, nausea, vomiting, crankiness, mood swings, weight changes, hearing loss, heart damage or a greater chance of infection.
Brown & Madan-Swain, 1993
What does cancer mean for my child’s intelligence and learning?
Cancer and its treatments sometimes cause problems with a child’s ability to learn. Each treatment has different side-effects — some short-term (eventually going away), others long-term (problems that stick around). Some “late effects” do not appear until two to five years after treatment. Some long-term effects may never go away.
Your child may need accommodations or modifications to help learn.
Parents and teachers of children with cancer should keep an eye out for potential learning problems including difficulties with:
- Reading or reading understanding.
- Language arts: Trouble with vocabulary, blending sounds and how to use words or word orders.
- Attention problems: Becoming more impulsive or easier to distract than peers.
- Short-term memory: Difficulty remembering things just seen or heard.
- Planning and organization skills.
- Social maturity and social skills: Your child acts much younger than his or her age and has problems relating to other children.
Don’t ignore warning signs that your child’s abilities have changed:
- Was an A student before and is now working just as hard and getting Cs.
- Takes three hours to do homework that used to take one hour.
- Reads a story and then has trouble explaining the plot.
- Frequently comes home frustrated from school, saying she/he just doesn’t understand things as well as the other kids.
- Your child’s teacher complains that she “just doesn’t pay attention” or “just needs to work harder.”
Who are some professionals my child may need to see?
Your child may need to see many different health care specialists. For example:
Pediatrician: A doctor who specializes in treating children. The word “pediatric” in front of a professional’s title means he or she works with children.
Pediatric oncologist: A doctor who specializes in treating children with cancer or cancer related conditions.
Pediatric hematologist: A doctor who specializes in treating children with blood-related disorders.
Pediatric neurologist: A doctor who specializes in treating conditions of the nervous system and the brain in children.
Pediatric neuropsychologist: A doctor who specializes in treating disorders of mental function and the nervous system.
Pediatric otolaryngologist: A doctor who specializes in treating conditions of the ears, nose and throat in children. They are sometimes called ear nose and throat specialists.
Pediatric physical therapist: A professional who evaluates and treats disease or injury by physical means such as exercise, ultrasound, massage or other such treatments rather than with medication.
Pediatric speech-language therapist: A professional who evaluates and treats communication disorders and swallowing problems. A speech-language pathologist is sometimes called a speech therapist or speech pathologist.
Art or Music Therapist: A professional trained to use art or music as a means of emotional support and counseling.
Social worker and counselor: A professional who provides counseling and emotional support for the child and family, and may help coordinate services, too.
Care coordinator: An individual responsible for organizing the details across agency lines and serving as your contact to help you and your family get services and assistance.
Early childhood special educator/special-education teacher: A teacher trained to work with your child. He or she will focus their attention on your child’s development, and work with you to help you learn the techniques to benefit your child.
What are some websites where I can learn how to help my child?
National Cancer Institute, PDQ http://www.cancer.gov/cancertopics/pdq/pediatrictreatment Information on many different types of cancers and their treatments.
CureSearch: Children’s Oncology Group and National Children’s Cancer Foundation: http://www.curesearch.org Here you can find information about childhood cancer to address the needs of the patient, parent and families.
American Cancer Society http://www.cancer.org/docroot/home/index.asp Provides the public with accurate, up-to-date information on cancer.
The Leukemia and Lymphoma Society http://www.leukemia-lymphoma.org/hm_lls Information on blood cancers.
National Academies Press; Childhood Cancer Survivorship: Improving Care and Quality of Life (2003);National Cancer Policy Board (NCPB);Institute of Medicine (IOM) on surviving childhood cancer and improving quality of life.
Pediatric Brain Tumor Foundation of the United States http://www.pbtfus.org Information on childhood tumors and the research being done to discover a cause.
Children’s Brain Tumor Foundation http://www.cbtf.org provides an array of information and resources to help you access expert care to ensure quality of life for a child with a brain or spinal cord tumor.
Bandaids and Blackboard http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/sitemap.html A great site for kids, teens and parents of kids with medical challenges.
What are some special books I can read to my child?
Draw Me a Picture by Susan Nessim and Barbara Wyman A.T.R., M.F.C.C. A therapeutic coloring book for children with cancer that uses an animal character, Marty Bunny, as a model to help kids with cancer understand what they are going through. Available in English and Spanish. (Ages 3-6)
A Friend for Life by Susan Nessim and Barbara Wyman A.T.R., M.F.C.C. A therapeutic storybook for kids with cancer written designed to help children understand their illness, the treatment and deal with the interruption of their social and academic life. Used in cancer centers throughout the country. (Ages 7-11)