Hemorrhagic cystitis

Hemorrhagic cystitis (bleeding from the bladder) may result from administration of certain chemotherapy drugs used in your child's conditioning regimen. Occasionally, it is caused by a bacterial or viral bladder infection. Symptoms of hemorrhagic cystitis include blood in the urine (which may be obvious to the eye or microscopic), blood clots in the urine, pain with urination, and bladder discomfort. If your child receives a chemotherapy drug that has the potential to cause this problem, Mesna...

Being an advocate for your child

Hospitals can be frightening places for children. Parents need to provide comfort, protection, and advocacy for their vulnerable child. To fulfill these roles, parents need to be present. Most pediatric hospitals are quite aware of how much better children do if a parent is allowed to sleep in the room. Sometimes small couches convert into beds, or parents can use a cot provided by the hospital. If hospital policy requires the parent to leave, insist on staying. Geralyn Gaes tells a story in...

The military

Some survivors of childhood cancer wish to enlist in the military, or to apply for Reserve Officer Training Corps (ROTC) or the service academies. In an article in Pediatric Clinics of North America, Grace Ann Monaco wrote The laws and regulations relating to admission to the armed services are permissive, not mandatory. This means that each of the armed services can enforce these laws and regulations if the service wishes to do so. Usually, taken on a case-by-case basis, survivors of childhood...

Can pets transmit diseases

It is very unlikely that your child will be harmed from living with a household pet, but several common sense precautions are needed to protect a child with a low ANC from disease, worms, or infection Make sure that the animal is vaccinated against all possible diseases. Have pets checked for worms as soon as possible after your child is diagnosed, and then every year thereafter (more often for puppies). Do not let pets eat off plates or lick your child's face. Keep children away from the cat...

Genetic factors

Persons with extra chromosomes (genetic material contained in cells) or certain chromosomal abnormalities have a greater chance of developing leukemia. Children with Down syndrome, neurofibromatosis type 1 (NF1), Shwachman syndrome, Bloom syndrome, Franconi anemia, Kostmann syndrome, and ataxia telangiectasia have a higher risk of getting leukemia than do children without these genetic disorders. However, most children with these syndromes do not develop leukemia. In cases where one identical...

Leukemia is a disease of the blood

Blood is a vital liquid that carries oxygen, food, hormones, and other necessary chemicals to all of the body's cells. It also removes toxins and other waste products from the cells. Blood helps the lymph system fight infection and carries the cells necessary for repairing injuries. Blood also contains important clotting factors. Whole blood is made up of plasma, which is a clear fluid, and many other components, each with a specific task. All three types of blood cells are affected by leukemia...

Chronic myelogenous leukemia CML

CML is rare in children, accounting for less than 5 percent of all childhood leukemias. It is characterized by a very large spleen, high white count of mostly neutrophils and other types of granulocytes, and a high platelet count. Other symptoms of CML are fatigue, weakness, headaches, irritability, fevers, night sweats, and bone pain. Some children have no symptoms and the cancer is diagnosed after a routine blood test done for other reasons. In over 90 percent of children with CML, analysis...

Treatment for children with CML

The goal of initial treatment is to lower the white count and reduce the size of the spleen and liver. This is accomplished by taking oral medications, historically either hydroxyurea or busulfan (also called Myleran). More recently, STI-571 (Gleevec) or the biologic agent interferon alfa are being used. Patients with a complete response (normal physical examination, normal blood counts and bone marrow, disappearance of the Philadelphia chromosome) will have a prolongation of the chronic phase...

Keeping financial records

You will not need a calendar or journal for financial records, just a big, well-organized file cabinet. It is essential to keep track of bills and payments. Dealing with financial records is a major headache for many parents, but keeping good records can prevent financial catastrophe. The following are ideas on how to organize financial records Set up a file cabinet just for medical records. Have hanging files for hospital bills, doctor bills, all other medical bills, insurance explanations of...

Cognitive problems

Intrathecal and intravenous methotrexate and or radiation to the brain can sometimes cause damage to the central nervous system. Some children develop learning disabilities which can start immediately or several years after treatment. Typically, poor performance is noted in mathematics, spatial relationships, problem solving, attention span, and concentration skills. My daughter is a year off treatment and three years past radiation and seems to have no cognitive problems at all. She is doing...

Your legal rights United States

The cornerstone of all federal special education legislation in the United States is Public Law 94-142, The Education for All Handicapped Children Act. It was amended in 1990 to PL 101-476 and called IDEA The Individuals with Disabilities Education Act, and then re-authorized in 1997. The major provisions of this legislation are the following All children, regardless of disability, are entitled to a free and appropriate public education (FAPE) and necessary related services. Children will...

Possible longterm side effects

Most children and teens with high-risk or relapsed leukemia receive 1,800 or 2,400 cGy to the whole brain and sometimes radiation to the spinal cord. Boys or teens with a testicular relapse get radiation to the testicles, and some children get total body radiation prior to bone marrow transplant. Specific disabilities depend on the age of the child, the dose of radiation, and the location of the radiation. Although short-term effects appear and subside, long-term side effects may not become...

Support groups for parents

Support groups offer a special perspective for parents of children with cancer, as well as fill the void left by the withdrawal or misunderstanding of family and friends. Parents in similar circumstances can share practical information learned through personal experience, provide emotional support, give hope for the future, and truly listen. Coping with life-threatening illness requires unique perspective the ability to accept the gravity of the situation while balancing other aspects of...

Helping siblings cope

The following are suggestions from several families about ways to help brothers and sisters cope. Make sure that you explain leukemia and its treatment to the siblings in terms that they understand. Create a climate of openness, so that they can ask questions and know that they will get answers. If you don't know the answer to a question, write it on your list to ask the doctor at the next appointment, or ask your child if he would like to go to the appointment with you and ask the question...

External catheter

The external catheter is a long, flexible tube with one end in the right atrium of the heart and the other end outside the skin of the chest. The tube tunnels under the skin of the chest, enters a large vein near the collarbone, and threads inside the vein to the heart (see Figure 8-1). Because chemotherapy drugs, transfusions, and IV fluids are put in the end of the tube hanging outside the body, the child feels no pain. Blood for complete blood counts (CBC) or chemistry tests can also be...

Peripherally inserted central catheters

A peripherally inserted central catheter is also referred to as a PICC line. This type of catheter is placed in the antecubital vein (a large vein in the inner elbow area) and is threaded into a large vein above the right atrium of the heart (see Figure 8-4). Unlike other catheters, a PICC line can be inserted by an IV nurse, rather than by a surgeon. Figure 8-4. PICC (peripherally inserted central catheter) line The PICC line can remain in place for many weeks or months, avoiding the need for...

Alanine aminotransferase ALT

ALT is also called SGPT (serum glutamic pyruvic transaminase). When doctors talk about liver functions, they are usually referring to tests on blood samples that measure liver damage. If the chemotherapy is proving to be toxic to your childs liver, the damaged liver cells release an enzyme called ALT into the blood serum. ALT levels can go up in the hundreds or even thousands in some children on chemotherapy. Each institution and protocol has different points at which they decrease dosages or...

Individual education plan IEP

The individual education plan describes the special education program and any other related services specifically designed to meet the individual needs of your child with learning differences. It is developed as a collaboration between parents and professional educators to determine what the student will be taught, and how and when the school will teach it. Students with disabilities need to learn the same things as other students reading, writing, mathematics, history, and other preparation...

Childhood Leukemia

A Guide for Families, Friends & Caregivers Understanding the diagnosis Getting excellent treatment Coping with side effects Finding emotional support Identifying resources Praise for Childhood Leukemia Of all the many kinds of help we had (and we had lots) the book was the single best gift we received. It was the gift of knowledge, so we could ask intelligent questions about our daughter's care. It was the gift of security, allowing us to foresee much of what was coming, and giving us the...

Learning disabilities

Some children who have been treated for leukemia are at risk of developing learning disabilities as a consequence of their treatment. Those at highest risk are children under 5 years old who receive both cranial radiation and intrathecal methotrexate, children who received high-dose methotrexate, and young children who are given significant amounts of intrathecal methotrexate. There is considerable research on the types of learning difficulties exhibited by these children. This topic is covered...

Constipation

Constipation means a decrease in the normal number of bowel movements. There are many reasons that constipation occurs on chemotherapy. Some drugs, such as vincris-tine, slow the movement of the stool through the intestines, resulting in constipation. Pain medication, decreased activity, decreased eating and drinking, and vomiting can all affect the normal rhythm of the intestine. When movement through the intestine slows, stools become hard and dry. The following are parents' suggestions for...

Testicular radiation

For boys or teens with leukemic cells in the testes, radiation is included in the treatment plan. At the present time, most protocols require 2400 cGy to both testicles, given in 200 cGy doses, once a day for twelve days. Radiation treatment is usually only given Monday to Friday, with weekends off. Treatment plans vary among protocols and institutions. Prior to your sons radiation to the testes, the technologist or child life specialist will give a tour of the facility, describe the machines,...

Pharmacological method

Most pediatric oncology clinics offer the choice of sedation and or anesthesia for painful procedures or non-painful procedures that require that your child lie completely still. If you find that your child is distressed by painful procedures (bone marrow aspiration and spinal taps), it is reasonable to explore all available options for pain relief. One father, a doctor just completing his anesthesia residency, explained That first bone marrow was horrible. To have my little 3-year-old look up...

Chicken pox

Chicken pox is a common childhood disease caused by a virus called varicella zoster. The symptoms are headache, fever, and malaise, followed by eruptions of pimple-like red bumps. The bumps typically start on the stomach, chest, or back. They rapidly develop into blister-like sores that break open, then scab over in three to five days. Any contact with the sores can spread the disease. Children are contagious up to 48 hours before breaking out. Chicken pox can be a fatal disease for...

Choosing a transplant center

Choosing a transplant center is a very important decision. Institutions may just be starting a bone marrow or blood stem cell program, or they may have vast experience. Some may be excellent for adults, but have limited pediatric experience. Some may allow you to room in with your child others may isolate the child for weeks. Protocols vary among institutions, as well. The center closest to your home may not provide the best medical care available for your child or allow the necessary quality...

Pros and cons of clinical trials

Making the decision whether to have your child participate in a clinical trial is sometimes difficult. The following lists of reasons why some families chose to enroll or not may help you clarify how you feel about this important decision. Children receive either state-of-the-art investigational therapy or the best standard therapy available. Clinical trials can provide an opportunity to benefit from a new therapy before it is generally available. Information gained from clinical trials will...

Referral for services

You will need to become an advocate for your child as she goes through the several steps necessary to determine what placement, modifications, and services will provide a free and appropriate public education. The steps in an individual education plan (IEP) process are referral, evaluation, eligibility, annual review, and three-year assessment. My son had problems as soon as he entered kindergarten while on treatment. He couldn't hold a pencil, and he developed difficulties with math and...

Chemotherapy drug list

Drugs used for chemotherapy are known by various names. You may hear the same drug referred to by its generic name, abbreviation, or one of several brand names, depending on which doctor, nurse, or pharmacist you are talking to. The list below gives the most common names used for chemotherapy drugs and tells you what name is used in this chapter so you can easily find it on the following pages of detailed information. L-Asparaginase (L-a-SPARE-a-gin-ase), PEG-Asparaginase Also called Asp,...

Questions to ask about radiation treatment

If radiation has been recommended as a treatment for your child, some questions you can ask the oncologist are Why does my child need radiation What type of radiation does she need What part of his body will be treated with radiation What is the total dose of radiation that she will receive How many treatments of radiation will he get How much experience does this institution have in administering this type of radiation to children How will she be positioned on the table Will any restraints be...

Grandparents

Grandparents grieve deeply when a grandchild is diagnosed with leukemia. They are concerned not only for their grandchild, but for their own child (the parent) as well. Cancer wreaks havoc with grandparents' expectations, reversing the natural order of life and death. Grandparents frequently say, Why not me I'm the one who is old. Parents express anguish at having to tell the grandparents the grim news. Cancer in a grandchild is a major shock to bear. Many parents reported that the grandparents...

Changes in taste and smell

Chemotherapy can cause changes in the taste buds, altering the brains perception of how food tastes. Meats often taste bitter, and sweets can taste unpleasant. Even foods that children crave taste bad. The sense of smell is also impacted by chemotherapy. Smells can be heightened so that smells that other family members do not notice can cause nausea in a child on chemotherapy. Both the sense of smell and the sense of taste can take months to return to normal after chemotherapy ends. Once Katy...

Diarrhea

Chemotherapy destroys cancer cells, as well as any cells that are produced at a rapid rate such as those that line the mouth, stomach, and intestines. This damage can cause diarrhea, ranging from mild (frequent, soft stools) to severe (copious quantities of liquid stool). Diarrhea during chemotherapy can also be caused by some antinausea drugs, antibiotics, or intestinal infections. After chemotherapy ends and immune function returns to normal, the lining of the digestive tract heals and the...

Lactose intolerance

Lactose intolerance is when the body can't absorb the sugar (lactose) contained in milk and other dairy products. Both antibiotics and chemotherapy can cause lactose intolerance in some individuals. The part of children's intestines that breaks down lactose stops functioning properly, resulting in gas, abdominal pain, bloating, cramping, and diarrhea. If your child develops this problem, it is important to talk to a nutritionist to learn about low-lactose diets and alternate sources of protein....

Enteral nutrition

If your child requires supplemental feeding, and the bowel and intestines are still functioning well, enteral nutrition may be recommended. Enteral feedings are preferred over IV when possible. Enteral nutrition is feeding via a tube placed through the nose into the stomach or small intestine (NG tube) or via a tube surgically placed directly into the stomach through the abdominal wall (G-tube). Nutritionally complete liquid formulas are fed through the tube. Your oncologist and nutritionist...

Children during and after treatment

Your child will probably be changed in appearance or attitude by the drugs that he takes for treatment. However, when treatment ends, your child's appearance, energy, and personality will recover. Its hard to tell yourself this too will pass when you are looking at a child who has lost his hair, is swollen from prednisone, and has frequent rages. The parents of the children below make these photos public so that you can more fully believe that you will get your child back after chemotherapy is...

SSI Supplemental Security Income

SSI is a federal (US) program administered by the Social Security Administration, and is an entitlement based on family income. Recipients must be blind or disabled and have a low family income and few assets. Children with cancer qualify as disabled for this program, making some of them eligible for monthly aid if the family income and assets are low enough. To find out if your child qualifies, look in the phone book under United States Government for Social Security Administration. Call the...

Hair loss

Chemotherapy drugs destroy not only cancer cells, but also normal cells that are produced at a rapid rate. Because hair follicle cells reproduce quickly, chemotherapy causes some or all body hair to fall out. The hair on the scalp, eyebrows, eyelashes, underarms, and pubic area may slowly thin out or may fall out in big clumps. Hair regrowth usually starts one to three months after maintenance starts or intensive chemotherapy ends. The color and texture may be different from the original hair....

Bed wetting

Bed wetting, although infrequent, can be a very upsetting side effect of chemotherapy. Some drugs increase thirst, while others disrupt normal sleep patterns, both of which can make bed wetting more likely. Lots of IV fluids at night are a problem for some children. When the bed wetting is caused by drugs or IVs, time will cure the problem. Once the drug or extra fluid is no longer necessary, the bed wetting will stop. There are also psychological reasons for bed wetting during chemotherapy....

Spinal tap umbar puncture or LP

Due to the blood-brain barrier, systemic chemotherapy usually cannot destroy any blasts in the central nervous system (brain and spinal cord). Chemotherapy drugs must be directly injected into the cerebrospinal fluid to kill any blasts present and prevent a possible central nervous system relapse. The drugs most commonly used intrathecally are methotrexate, ARA-C, and hydrocortisone. The number of spinal taps required varies depending on the child's risk level, the clinical study involved, and...

How to protect the child with a low ANC

Generally, an ANC 500 to 1,000 provides children enough protective neutrophils to fight off exposure to infection due to bacteria and fungi. With an ANC this high, you can usually allow your child to attend all normal functions such as school, athletics, and parties. However, it is wise to keep close track of the pattern of the rise and fall of your child's ANC. If you know that the ANC is 1,000, but is on the way down, it will affect your decision about what activities are appropriate. Each...