Chemotherapy

Numerous medical advances have helped health care professionals manage, lessen, and prevent certain side effects of cancer treatments. But parents whose kids need chemotherapy — one of the most common treatments for childhood cancer — often have many questions and concerns about it.

About Chemotherapy

Chemotherapy (often just called "chemo") refers to medications that kill actively dividing cells. Unlike healthy cells, cancer cells reproduce continuously because they don't respond to the normal signals that control cell growth. Chemotherapy works by disrupting cell division and killing these actively dividing cancer cells. In contrast to radiation therapy, which destroys the cancerous cells of a tumor in a specific area of the body, chemotherapy works to treat cancer throughout the body.

If your child has been diagnosed with cancer, doctors will likely develop a customized treatment plan that takes into account your child's age, the type of cancer, and where it's located. A pediatric oncologist (a doctor who specializes in the treatment of childhood cancer) will work with other health care professionals to determine the chemotherapy regimen that's best for your child.

How Chemotherapy Is Given

Just as other medicines can be taken in various forms, there are several ways to get chemotherapy. In most cases, it's given intravenously into a vein, also referred to as an IV. An IV is a tiny tube inserted into a vein through the skin, usually in the arm. The IV is attached to a bag that holds the medicine. The chemo medicine flows from the bag into the vein, which puts the medicine into the bloodstream. Once the medicine is in the blood, it can travel through the body and attack cancer cells.

Sometimes, a permanent IV called a catheter is placed under the skin into a larger blood vessel of the upper chest. That way, a child can get chemotherapy and other medicines through the catheter without having to always use a vein in the arm. The catheter remains under the skin until all the cancer treatment is completed. It can also be used to obtain blood samples and for other treatments, such as blood transfusions, without repeated needle sticks.

Chemo also can be:

• taken as a pill, capsule, or liquid that is swallowed
• given by injection into a muscle or the skin
• injected into spinal fluid through a needle inserted into a fluid-filled space in the lower spine (below the spinal cord)

Chemotherapy is sometimes used along with other cancer treatments, such as radiation therapy, surgery, or biological therapy (the use of substances to boost the body's immune system while fighting cancer).

Lots of kids and teens receive combination therapy, which is the use of two or more cancer-fighting drugs. In many cases, combination therapy lessens the chance that a child's cancer will become resistant to one type of drug — and improves the chances that the cancer will be cured.

When and Where Chemotherapy Is Given

Depending on the method used to administer chemotherapy, it may be given at a hospital, cancer treatment center, doctor's office, or at home. Many kids receive chemotherapy on an outpatient basis at a clinic or hospital. Others may need to be hospitalized to monitor or treat side effects.

Kids may receive chemotherapy every day, every week, or every month. Doctors sometimes use the term "cycles" to describe a child's chemotherapy because the treatment periods are interspersed with periods of rest so the child can recover and regain strength.

Common Side Effects of Chemotherapy

Although chemo often effectively damages or eliminates cancer cells, it also can damage normal, healthy cells. And this can lead to some uncomfortable side effects. Chemotherapy side effects are different for each child. The type of anticancer drug used, the dosage, and a child's general health affect the risk of developing unpleasant side effects. The good news is that most side effects are temporary — as the body's normal cells recover, the side effects gradually go away.

Cancer treatment is multifaceted — that is, patients receive a lot of care (i.e., fluid and nutrition support, transfusion support, physical therapy, and medicines) to help them tolerate the treatments and treat or prevent side effects such as nausea and vomiting. It's difficult to pinpoint which side effects a child might experience, how long they'll last, and when they'll end. Talk to your doctor if your child has side effects about how to cope with them.

Fatigue

Fatigue is the most common side effect of chemotherapy. Kids may need to reduce or eliminate all but the most essential activities during chemo, and may feel very tired even after sleeping and resting. Fatigue may last for days, weeks, or months, but it does go away once treatment is over. Encourage your child to rest and sleep as often as possible — even if it doesn't immediately result in more energy — because rest helps the body recover from chemo. Short naps or breaks from activity may be more beneficial than longer ones.

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Caring for a Seriously Ill Child

Taking care of a chronically ill child is one of the most draining and difficult tasks a parent can face. Beyond handling physical challenges and medical needs, you'll have to deal with the emotional needs your child may have and the emotional impact that the prolonged illness can have on the entire family. Luckily, this tough balancing act doesn't have to be done alone: support groups, social workers, and family friends often can lend a helping hand.

Explaining Long-Term Illness to a Child

Honest communication is crucial to helping a child adjust to a serious medical condition. It's important for a child to know that he or she is sick and will be getting lots of care. The hospital and the medicine may feel frightening, but they're part of helping your child feel better. As you explain the illness and its treatment, give clear and honest answers to all questions in a way your child can understand. It's also important to accurately explain and prepare your child for any treatments — and possible discomfort that might go with along with those treatments.

Avoid saying "This won't hurt" if the procedure is likely to be painful. Instead, be honest if a procedure may cause some discomfort, pain, pressure, or stinging, but then reassure your child that it will be temporary and that you'll be there to offer support while or after it's done. Many hospitals give parents the option to speak to their child about a long-term diagnosis alone, or with the doctor or the entire medical team (doctors, social workers, nurses, etc.) present. Your doctor or other medical professional probably can offer advice on how to talk to your child about the illness.

Tackling Tough Emotions

Your child will have many feelings about the changes affecting his or her body, and should be encouraged and given opportunities to express any feelings, concerns, and fears. Ask what your child is experiencing and listen to the answers before bringing up your own feelings or explanations. This kind of communication doesn't always have to be verbal. Music, drawing, or writing can often help kids living with a life-threatening disease express their emotions and escape through a fantasy world of their own design.

Kids may also need reminders that they're not responsible for the illness. It's common for them to fear that they brought their sickness on by something they thought, said, or did. Reassure your child that this is not the case, and explain in simple terms what caused the illness. (You may also want to reassure your other kids that nothing they said or did caused their sibling's illness.) For many questions, there won't be easy answers. And you can't always promise that everything is going to be fine. But you can help your child feel better by listening, saying it's OK and completely understandable to have those feelings, and explaining that you and your family will make him or her as comfortable as possible.

If a child asks "why me?" it's OK to offer an honest "I don't know." Explain that even though no one knows why the illness occurred, the doctors do have treatments for it (if that's the case). If your child says "it's not fair that I'm sick," acknowledge that your child is right. It's important for kids to know it's OK to feel angry about the illness. Your child may ask "am I going to die?" How you answer will depend on your child's age and maturity level. It's important to know, if possible, what specific fears or concerns your child has and to address them specifically. If it is reassuring to your child, you may refer to your religious, spiritual, and cultural beliefs about death. You might want to stay away from euphemisms for death such as "going to sleep." Saying that may cause children to fear going to sleep. Regardless of their age, it's important for kids to know that there are people who love them and will be there for them, and that they'll be kept comfortable.

Just like any adult, a child will need time to adjust to the diagnosis and the physical changes and is likely to feel sad, depressed, angry, afraid, or even to deny that they are sick. Think about getting professional counseling if you see signs that these feelings are interfering with daily function, or your child seems withdrawn, depressed, and shows radical changes in eating and sleeping habits unrelated to the physical illness.

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Camps for Kids With Special Needs

Ah, summer camp. The mosquitoes, the swim races, the friendships, the bug juice, the postcards home. What child wouldn't benefit from the fun and structured freedom camps provide? Kids with special needs are no exception. But the idea can seem challenging to parents and kids alike — how can you be sure that your child will get the attention he or she needs? Will your child be able to participate fully? What about the other kids? Will your child make friends? Will they understand your child's special needs?

The good news is that there are many camp choices for kids with special needs. From highly specialized camps to regular camps that accommodate kids with special needs, options abound.

Different Types of Camps

When it comes to camps, kids with special needs have as many choices as other kids. The Americans with Disabilities Act (ADA) requires all camps to make reasonable accommodations (such as the installation of wheelchair-accessible ramps) so that kids with special needs can attend. So, camps that previously couldn't host kids with special needs might now be on your list of possibilities. Inclusionary (or mainstream) camps do just what their name implies: They include kids with special needs in their groups of children with regular needs. These camps may have started out serving only a general population of kids, but they've gradually changed as the needs of the families they serve have changed.

Some camps are designed just for kids with special needs, including kids who have learning or behavioral problems, those with specific chronic illnesses, and kids with mental or physical impairments. Many accept kids with a variety of needs, but some only accept kids with specific problems (such as camps for kids with diabetes, cancer, speech or hearing impairment, cystic fibrosis, cerebral palsy, epilepsy, etc.). Within all of these categories, you'll have even more choices to consider regarding length of stay, philosophy, and cost. There are nonprofit and for-profit camps, religious camps, camps run by national organizations, private camps, day camps, camps that run weekend sessions, and sleepover camps that accept kids for the entire summer.

Benefits of Camp

The benefits of camp for kids with special needs are often the same as for any child:

• increased confidence and independence
• activity and exercise
• the opportunity to interact with other kids, develop friendships, and build relationships
• positive role modeling by adults
• a chance for parents to have a much-needed break

Independence is an important camp benefit. For example, an overnight mainstream camp can give special-needs kids the chance to be without parents, doctors, or physical therapists for a week. They'll do more things for themselves and learn how to ask friends to help, which can boost problem-solving and communication skills. Also, camp provides the physical benefits of increased activity. Many kids with disabilities or chronic illnesses are sedentary and don't get to participate in the sports or recreational activities that their peers do. They therefore miss out on the social and health benefits that exercise brings.

Camp provides a variety of activities such as swimming, wheelchair racing, dancing, tennis, or golf. These give immediate health benefits (such as improved cardiovascular fitness) and recreational options that can carry over into adult life. Many camps combine learning environments with these physical activities, giving kids with behavioral or learning problems the chance to develop, or catch up on, needed skills during the summer.

Starting Your Camp Search

To find a camp, make lists of the basics you're looking for: a list of goals, a list of caretaking priorities, and a list of other considerations (such as cost). Then consider which type of camp might best suit your child:

• inclusionary (or mainstream) camps
• camps for kids with a specific special need
• camps for kids with many different kinds of special needs

Consider whether your child has ever been away from home, for the weekend or even longer, and what experiences might have helped prepare him or her for camp. This will help you to decide not only the type of camp, but whether your child is ready for a day camp or a sleepover (residential) camp. Involving kids in the camp search will help to ensure that they get the most out of the camp selected. So, ask your child:

• What do you want to get out of summer camp?
• What are your preferences?
• Do you want to go to a coed camp, or just be around kids of the same gender?
• Are there any activities you really want to try?
• Would you be more comfortable going to a camp with kids who do or don't have special needs?
• Are you comfortable being away from home? If so, for how long?
• Do you have classmates or friends who have gone to a summer camp? If so, which ones? And did they like it?

If it turns out that the idea of camp is a bit overwhelming for both you and your child, you might want to try starting small, like weekend sessions at a special-needs camp.

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Birth Defect

Like most expectant parents, you probably alternate between fantasies about a healthy baby and worries that your baby will have a health problem. Or perhaps you've been told through prenatal screening that your baby might be born with a birth defect. Many parents assume that all birth defects are severe or even fatal, but the fact is that many are treatable, often immediately after birth — and sometimes even before the baby is born.

It's especially important to know the risk factors involved and how to prevent birth defects. However, it's also important to realize that most babies born with congenital defects are born to two healthy parents.

About Birth Defects

Birth defects are defined as abnormalities of structure, function, or body metabolism that are present at birth. Major birth defects are abnormalities that lead to developmental or physical disabilities or require medical or surgical treatment. There are more than 4,000 different known birth defects, ranging from minor to serious, and although many can be treated or cured, they're the leading cause of death in the first year of life.

According to the March of Dimes, about 150,000 babies are born with birth defects each year in the United States. The American College of Obstetricians and Gynecologists (ACOG) says that 3 out of every 100 babies born in the United States have some kind of major birth defect. Birth defects can be caused by genetic, environmental, or unknown factors. For most birth defects, the cause is believed to be an interaction of a number of genetic and environmental factors.

Structural or metabolic defects are those in which a specific body part is missing or formed incorrectly; metabolic birth defects are those in which there is an inborn problem in body chemistry. The most common type of major structural defects are heart defects, which affect 1 in 150 babies in the United States. Other common structural defects include spina bifida, cleft palate, clubfoot, and congenital dislocated hip.

Metabolic defects affect 1 in 3,500 babies and usually involve a missing or incorrectly formed enzyme (a protein necessary for processing chemical substances in the body). Most children with a metabolic birth defect do not have any visible abnormalities, but metabolic defects are usually harmful or can be even fatal. Metabolic defects include Tay-Sachs disease, a fatal disease that affects the central nervous system, and phenylketonuria (PKU), which affects the way the body processes protein.

Defects caused by congenital infections result when a mother gets an infection before or during the pregnancy. Infections that can cause birth defects include rubella (German measles), cytomegalovirus (CMV), syphilis, toxoplasmosis, Venezuelan equine encephalitis, parvovirus, and, rarely, chickenpox. None of these affect 100% of babies whose mothers are infected during pregnancy. If the mother is infected during early pregnancy, rubella carries the highest risk for birth defects (approximately 20%). Because of nearly universal immunization in the United States, rubella is very, very rare and the congenital rubella syndrome is almost never seen. CMV is probably the most common congenital infection and may be associated with intellectual disability (mental retardation) and hearing loss.

Other causes of birth defects include alcohol abuse by the mother. Although a few medications, such as medicines used for epilepsy, are associated with increased risks for certain birth defects, most commonly prescribed drugs are not associated with a significant risk of birth defects.

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