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...