Sibling grief adult reading

Children Mourning, Mourning Children. Hemisphere Publications, 1995. A collection of chapters (first presented at the Hospice Foundation of America conference) written by many healthcare professionals who work with grieving children. Topics include children's understanding of death, answering grieving childrens questions, the role of the schools, and many others. Grollman, Earl. Talking About Death A Dialogue Between Parent and Child, 3rd ed. Boston Beacon Press, 1991. One of...

Sibling grief schoolaged children

What on Earth Do You Do When Someone Dies Minneapolis MN Free Spirit Publishing, 1999. Warm, honest words and beautiful illustrations help children understand and cope with grief. Temes, Roberta, PhD. The Empty Place A Child's Guide Through Grief. Far Hills, New Jersey New Horizon Press, 1992. To order, call (402) 553-1200. Explains and describes feelings after the death of a sibling, such as the empty place in the house, at the table, in a brothers heart. White, E.B....

Sibling grief

Siblings are sometimes called the forgotten grievers because attention is typically focused on the parents. Children and teens hesitate to express their own strong feelings in an attempt to prevent causing their parents additional distress. Indeed, adult family members and friends may advise the brothers and sisters to be strong for their parents or to help your parents by being good. These requests place a terribly unfair burden on children who have already endured months or years of stress...

Parental grief

Bereavement A Magazine of Hope and Healing. Founded in 1987 by a bereaved mother to provide support for those grieving, this magazine allows direct feedback from the bereaved to helping professionals and helps the nonbereaved learn what helps and what hurts. For a free copy or to subscribe, call (888) 604-4673. Bernstein, Judith R When the Bough Breaks Forever After the Death of a Son or Daughter Kansas City, Missouri Andrews & McMeel, 1998. A serious and sensitive look at how to cope with...

When my brother got cancer

Annie Walls (15 years old) relates a positive outcome to her and her brothers battle with childhood cancer. One experience in my life that was in no way comfortable for my family or myself and caused me a lot of confusion and grief was when my brother had leukemia. Along with the disruption of this event, it also caused me to grow tremendously as a person. The Thanksgiving of my third-grade year, Preston, my brother, became very ill and was diagnosed a few weeks later with having cancer This...

Transitioning from active treatment

For children who have had a series of relapses, medical caregivers and parents need to decide when to end active treatment and begin to work toward making the child comfortable for his remaining days. This is an intensely personal decision. Some families want to try every available treatment and exhaust all possible remedies. Others reach a point where they feel they have done all they can, and they simply do not want their child to suffer any more. They hope for time to share memories, express...

The role of family and friends

Family members and friends can be a wellspring of deep comfort and solace during grieving. Some people seem to know just when a hug is necessary or when silence is most welcome. Unfortunately, in our society there are few guidelines for handling the social aspects of grief. Many well-meaning persons voice opinions concerning the time it is taking to get over it or question the parents' decision to not give away their child's clothing. Others do not know what to say, so they are silent,...

Looking back after many years

Four parents whose children died many years ago share their thoughts on grief and how they changed My 15-year-old son was diagnosed with leukemia in 1962, and he lived until February 1963. He was tall, sturdy, wonderful. He inspired us all. Although it was very painful when he died, I truly felt that I had done all that I possibly could. I had four younger children, and I'd parceled myself out as best I could. Jennifer was born in October 1965, and my mother always said David had asked Our Lord...

Physical responses

Many parents become physically ill in the weeks following diagnosis. This is not surprising, given that most parents stop eating or grab only fast food, normal sleep patterns are a thing of the past, and staying in the hospital may expose them to illnesses. Every waking moment is filled with excruciating emotional stress, which makes the physical stress so much more potent. The second week in the hospital I developed a ferocious sore throat, runny nose, and bad cough. Her counts were on the way...

Negotiate

Don't be afraid to negotiate with the insurance company over benefits. Often, your contact person may be able to redefine a service that your child needs to allow it to be covered. Our insurance company covered 100 percent of maintenance drugs only if the patient needed them for the rest of their lives. Christine's drugs were only needed for two years but were extremely expensive. I asked my contact person for help, and she petitioned the decision-making board. They granted us an exemption and...

Feelings

Chapter 1, Diagnosis, provides an extensive list of feelings that parents may experience after the diagnosis of leukemia in their child. It is important to remember that children, both siblings and the ill child, are also overwhelmed by strong feelings, and they generally have fewer coping skills than adults. At varying times and to varying degrees, children and teens may feel fearful, angry, resentful, powerless, violated, lonely, weird, inferior, incompetent, or betrayed. Children have to...

Things that help

The long lists of things that help from Chapter 5, Family and Friends, (e.g., keeping the household running, feeding the family, and helping with bills) are still appropriate here. The following lists are specific suggestions for grief. I cannot even imagine the pain that you are feeling, but I am thinking about you. You and your family are in my thoughts and prayers. We would like to hold a memorial service at the school for your son if you think that it would be appropriate. I will never...

General

Information provided in this appendix has been organized by topic. If you cannot find a book in your bookstore or library, the following organizations may have copies available as well as additional resources for all age groups. Candlelighters Childhood Cancer Foundation. Bibliography and Resource Guide. 1994 with an update in 1998. (800) 366-2223 (CCCF). Extensive listing of books and articles on childhood cancer, coping skills, death and bereavement, effects on family, long-term side effects,...

School

Anderson, Winifred, Stephen Chitwood, and Deidre Hayden. Negotiating the Special Education Maze A Guide for Parents and Teachers, 3rd ed. Bethesda, Maryland Woodbine House, 1997. Excellent, well-organized text clearly explains the step-by-step process necessary to obtain help for your child. Has up-to-date resource list and a comprehensive bibliography. Essential reading for parents of children with special educational needs. If you only read one book, this should be the one. Chai Lifeline....

Teachers

Produced by CARTI. For information, call (800) 482-8561. Video and manual to help counselors, teachers, and other professionals help children deal with the grief, fear, confusion, and anger that occur after the death of a loved one. Has three segments one about training facilitators, one for children ages 5 to 8, and one for ages 9 to teens. Each section includes interviews with children and video from children's workshops. The Learning Disabilities Association of...

A

Absolute neutrophil count (ANC), 215-219,458 protecting child, 216-219 Accepting help, 95 Acupressure for pain, 47 Acupuncture, 206 for pain management, 47 Relief Band, 215 Acute lymphoblastic leukemia (ALL), 15, 20-27 cell types in, 21-22 chromosome number in, 22 CNS prophylaxis for, 24-25 consolidation therapy for, 25 induction phase of treatment, 24 intensive regimens, 26 maintenance for, 26 newest treatment options, 26-27 prognosis for, 21 reinduction for, 25 relapse, treatment of, 389...

Acute lymphoblastic leukemia ALL

Seventy-five percent of all children with leukemia have ALL. It is caused by a rapid proliferation of immature lymphocytes (lymphoblasts), which would normally have developed into mature T cells or B cells. There are several subgroups of ALL based on whether the cancer cells developed from precursors of B cells or T cells, or whether they display characteristics of both. The first sample of bone marrow taken from the child is analyzed to identify characteristics of the leukemia cells, in order...

Acute myeloid leukemia AML

AML (also called acute myelogenous leukemia, acute nonlymphocytic leukemia, or ANLL) is cancer of the blood cells. The cancer cells are those that would otherwise develop into granulocytes and monocytes. Because treatments for AML and ALL are very different, it is crucial that sophisticated laboratory studies are performed on the bone marrow samples to determine whether your child has AML or ALL. Eight thousand cases of AML are diagnosed in the US each year, most often in adults over 50....

Adhesives

Whether your child has a subcutaneous catheter, external catheter, or PICC line, dressing changes will be necessary. Some children don't mind at all having the Tegaderm or tape pulled off. For others, it is traumatic every time. Parents have many suggestions for ways to make it easier for kids. These suggestions also work for removing tape when using plastic dressings over EMLA Don't use Tegaderm if it bothers your child or reddens the skin. Try plastic wrap cut into a square and use paper tape...

Adjunctive treatments

In recent years increasing research has been done on mind-body medicine and its effect on coping with the side effects of illness. Adjunctive therapies are those that can be expected to add something beneficial to the treatment. For example, imagery and hypnosis are widely used to help children and teens prepare for or cope with medical procedures. Other helpful adjunctive therapies are relaxation, biofeedback, massage, visualization, acupuncture, meditation, aromatherapy, and prayer. Chapter...

Altered taste and smell

One common reason why children on treatment do not eat is because, for them, food has no taste or tastes bad. If the problem is food having no taste, try serving highly seasoned food (e.g., Italian, Mexican, or curried foods). If foods taste bitter or metallic, avoid using metal pots, pans, and utensils. Serve the child's food with plastic knives, forks, and spoons. Replace red meat with tofu, chicken or turkey, eggs, and dairy products. For some children, taste returns to normal when...

Anger

Children's lives are disrupted by the diagnosis of a sister or brother with cancer, and it can make siblings very angry. Questions such as Why did this happen to us or Why can't things be the way they used to be are common. Children's anger may be directed at their sick brother, their parents, relatives, friends, or doctor. Children's anger may have a variety of causes, for instance, being left with baby-sitters so often, unequal application of family rules, or additional responsibilities at...

Aseptic necrosis

Long-term use of high-dose steroids can cause a problem called aseptic necrosis. This condition is caused by the death of the small blood vessels that nourish the bones. Pain and loss of mobility result. Leslee was an athlete who played three sports prior to her AML diagnosis and bone marrow transplant. The steroids saved her life but destroyed her bones. She has had surgery on her shoulders, hips, and knee joints. Her shoulders and hips are much better, but her knees are still painful, and she...

Ask for help

It is very helpful to consult the hospital nutritionist to obtain more information and ideas on how to add more protein and calories to your childs diet. I had two quite different experiences with hospital nutritionists. At the children's hospital, I couldn't get the doctors concerned about my daughter's dramatic weight loss. She was so weak she couldn't stand, and her muscles seemed to be wasting away. I finally asked the receptionist to please send in a nutritionist. A very young woman came...

Assent

Children under the age of 18 do not have the right to refuse standard treatment for their cancer. They do have the right to accept or reject experimental treatments. All clinical trials are considered to be experimental treatments. Regardless of whether the child will receive the standard treatment or an experimental treatment, they have rights to have the disease, treatment, and procedures explained to them at an age-appropriate level. Assent means that children and adolescents are involved in...

B

Baby-sitting, 89, 91 Bacterial infections, stem cell transplantation and, 411 Bactrim, 194-195 Bag Balm, 224 Balanced diet, 272-274 Balloon bouquets, 123-124 Bed wetting, 228-230 Behavioral issues of children, 339-344 of parents, 344-349 stressed children, parenting, 355 Benadryl, 197 Benzene exposure, 17 Bereavement. See Death Bibliography, 478-479 for chemotherapy, 481-482 for children teens siblings, 479-480 for clinical trials, 481 death, issues around, 490-491 for emotional issues, 485 for...

Befriending the staff

Hospitals are staffed by many wonderful and some not-so-wonderful people. Many parents find that their heightened stress makes them less tolerant of inefficiency or confusion. As discussed in Chapter 6, Forming a Partnership with the Medical Team, your child derives a greater sense of security if you and the staff can find a way to work together, rather than become adversaries. For example, if a parent does things like help change soiled bedding, take out food trays, and give baths, it can free...

Bereavement

7230 Maple Street Omaha, NE 68134 (402) 553-1200 http www. centering.org Publishes a free catalog that contains an extensive listing of books, cards, audiotapes, and videotapes on death and grieving. 901 North Pitt Street, Suite 230 Alexandria, VA 22314 (800) 242-4453 (800-24-CHILD) or (703) 684-0330 http www.chionline.org Provides resources and referrals for children and families of children with life-threatening conditions. The Compassionate Friends National Office PO. Box 3696 Oak Brook, IL...

Blood Counts

Example of a record-keeping sheet Figure B-2. Example of a record-keeping sheet Severe foot drop, paresis, or ilius Hold dose(s) when symptoms abate, resume at 1.0 mg m2 escalate to full dose as tolerated. Jaw pain Treat with analgesics do not modify vincristine dose. Withhold vincristine if total bilirubin > 1.9 mg dL. Administer 2 dose if total bilirubin 1.5-1.9 mg dL.

Blood Counts and What They Mean

Keeping track of their child's blood counts becomes a way of life for parents of children with leukemia. Unfortunately, misunderstandings about the implications of certain changes in blood values can cause unnecessary worry and fear. To help prevent these concerns, and to better enable parents to help spot trends in the blood values of their child, this appendix explains the blood counts of healthy children, the blood counts of children being treated for leukemia, and what each blood value...

Blood draws

Frequent blood samples are a part of life during leukemia treatment. A complete blood count (CBC) tells the physician how effective the drugs are and helps determine the child's susceptibility to infection. It is important to measure blood chemistries to make sure that the liver and kidneys are not being damaged by treatment. (For a list of normal blood counts, see Appendix B, Blood Counts and What They Mean.) During induction and consolidation, transfusions are necessary when the red cell...

Blood transfusions

Treatment for leukemia can cause severe anemia (a low number of oxygen-carrying red cells). The normal life of a red cell is three to four months and, as old cells die, the diseased (or suppressed by treatment) marrow cannot replace them. Many children require transfusions of red cells when first admitted and periodically throughout treatment. Whenever my son needed a transfusion, I brought along bags of coloring books, food, and toys. The number of VCRs at the clinic was limited, so I tried to...

Bone marrow and stem cell transplantation

BMT InfoNet provides a list of additional resources for bone marrow or stem cell transplant families at http www.bmtnews.org. Children's Organ Transplant Association 2501 Cota Drive Bloomington, IN 47403 (800) 366-2682 http www. cota.org National Bone Marrow Transplant Link 20411 W Twelve Mile Road, Suite 108 Southfield, MI 48076 (800) 546-5268 (800-LINK-BMT) or (248) 358-1886 http www. nbmtlink.org Provides hot line, peer support, library, clearinghouse, and suggestions for financial...

Bone marrow aspiration

Protocols for children with leukemia require bone marrow aspirations, a process by which bone marrow is sucked out with a needle. The purpose of the first, or diagnostic, bone marrow aspiration is to see what percentage of the cells in the marrow are abnormal blasts. Then these cells are analyzed microscopically to determine which type of leukemia is present. The next bone marrow aspiration occurs on day seven or fourteen of treatment. At this time, it is important to determine how many blasts...

Challenging a claim

The key to obtaining the maximum benefit from your insurance policy is to keep accurate records and to challenge any denied claims. Some tips on good recordkeeping are Make photocopies of everything you send to your insurance company, including claims, letters, and bills. Pay bills by check, and keep all of your canceled checks. Keep all correspondence you receive from billing companies and insurance. Write down the date, name of person contacted, and conversation of all phone calls concerning...

Changing doctors

Changing doctors is not a step to be taken lightly, but it can be a great relief if the relationship has deteriorated beyond repair. It is a good policy to exhaust all possible remedies prior to separating, or the same problems may arise with the new doctor. Communication, verbally or in writing, and mediation, using social service staff, can sometimes resolve the issues and prevent the disruption of changing doctors. Although there are many reasons for changing doctors, some of the most common...

Checklist for parenting stressed children

A group of parents compiled the following checklist to help you parent your stressed child. Model the type of behavior you desire. If you talk respectfully and take time-outs when angry, you are teaching your children to do so. If you scream and hit, that is how your children will handle their anger. Seek professional help for any behaviors that trouble you. Teach your children to talk about their feelings. Listen to your children with understanding and empathy. Be honest and admit your...

Children who need radiation therapy

Because of the possibility of long-term side effects from treating children with radiation, only a small percentage of children with leukemia receive radiation. Some of the children for whom radiation is prescribed are Children who have leukemia blasts in their central nervous system (CNS) at diagnosis. Children who are determined to be at extremely high risk of relapse in the central nervous system. Children who have relapsed in their central nervous system or testes. Children who require...

Chromosome number

Normal cells have 46 chromosomes (22 pairs and the sex chromosomes XX female and XY male). Some leukemia cells contain extra copies of entire chromosomes and thus can contain more than 46 chromosomes. This is called hyperdiploidy, and it is found in approximately 27 percent of children with ALL. There are two ways to evaluate the number of chromosomes counting them (karyotyping) or measuring the DNA content of cells (DNA index). Children with 53 or more chromosomes per cell or a DNA index...

Chromosome translocations

Sometimes genetic material is exchanged between chromosomes in leukemia cells. This is called a translocation. Translocations are very common in childhood ALL, and some of these are known to affect prognosis. Examples are Movement of the TEL (ETV6) gene on chromosome 12 to the AML1 (CBFA2) gene on chromosome 21. This is called the TEL-AML1 fusion and is found most often in children between the ages of 2 and 9. Children with this translocation usually have very good outcomes. The Philadelphia...

Clinical Trials

The challenge in pediatric oncology remains clear to strive for the cure and health of all children through the development of more effective yet less damaging treatment Daniel M. Green, MD and Giulio J. D'Angio, MD Late Effects of Treatment for Childhood Cancer within days of arriving at a major pediatric medical center with a child newly diagnosed with leukemia, parents are often asked to enroll their child in a clinical trial. A clinical trial is a carefully controlled research study that...

Comfort objects

Many parents worry when, after diagnosis, children regress to using a special comfort object. Many young children ask to return to using a bottle, or cling to a favorite toy or blanket. It is reasonable to allow your child to use whatever he can to find comfort against the terrible realities of treatment. The behaviors usually stop either when the child starts feeling better or when treatment ends. My daughter was a hair twirler. Whenever she was nervous, she would twirl a bit of her hair...

Commercial nutritional supplements

Many children cannot tolerate solid food or can only eat small amounts each day. Liquid supplements can help provide the necessary calories. The following is a sampling of the variety of supplements that can be purchased at pharmacies or grocery stores. If you are unable to locate a particular brand, your pharmacist may be able to order it for you Sustacal. Lactose-free liquid. Flavors are chocolate, vanilla, eggnog, and strawberry. Also comes in a high-protein or extra-fiber formula. (Mead...

Common behavioral changes of children

Discipline under the best of circumstances can be difficult. But when one child has leukemia, parents are stressed, siblings are angry, and the situation may become unmanageable. The first step is to decide whether the ill child is going to be treated as if she only has a few months to live, or as if she will survive and need to learn strategies for how to self-regulate difficult emotions. Step two is to examine your own behavior to see if you are modeling the conduct that you expect from your...

Common Side Effects of Chemotherapy

Chemotherapy drugs interfere with cancer cells' ability to grow or reproduce. Because rapidly dividing cells are more susceptible to chemotherapy drugs, cancer cells are severely affected. Unfortunately, healthy cells that multiply rapidly can be damaged as well. These normal cells include those of the bone marrow, mouth, stomach, intestines, hair follicles, and skin. This chapter explains the most common side effects of chemotherapy drugs, and explores ways to deal with them effectively....

Communication

Clear and frequent communication is the lifeblood of a positive doctor parent relationship. Doctors need to be able to explain clearly and listen well, and parents need to feel comfortable asking questions and expressing concerns before they grow into grievances. Nurses and doctors cannot read a parents mind, nor can a parent prepare her child for a procedure unless it has been explained well. The following are parent suggestions on how to establish and maintain good communication Tell the...

Computer

For the computer literate, keeping all medical records on the computer is a good option. Parents can print out bar graphs of the blood counts in relation to chemotherapy and quickly spot trends. You can also keep a running narrative of your thoughts, feelings, and concerns during your childs treatment. As with all other computer records, keep a backup copy on a separate disc. At our hospital, the summary of counts for a given child can be formatted to print out as a trend review with each date...

Concern about parents

Exhausted parents are sometimes not aware of the strong feelings of their healthy children. They sometimes assume that children understand that they are loved, and that they would be getting the same attention if they were the one who had cancer. Siblings frequently do not share their powerful feelings of anger, jealousy, or worry because they love their parents and do not want to place additional burdens on them. It is all too common to hear siblings say, I have to be the strong one. I don't...

Conflict resolution

In a situation where a child's life is threatened, such as childhood leukemia, the heightened emotions and constant involvement with the medical bureaucracy guarantee conflict. Because clashes are inevitable, resolving them is of paramount importance. A speedy resolution may result if you adopt Henry Fords motto, Don't find fault find a remedy. Following are some suggestions from parents on how to resolve problems Treat the doctors with respect, and expect respect...

Confusion and numbness

In their anguish, most parents remember only bits and pieces from the doctors early explanations about their child's disease. This dreamlike state is an almost universal response to shock. The brain provides protective layers of numbness and confusion to prevent emotional overload. This allows parents to examine information in smaller, less threatening pieces. Pediatric oncologists understand this phenomenon and are usually quite willing to repeat information as often as necessary. Many centers...

Coping well

Many children develop emotional competence from facing and coping with the difficulties of cancer. Others, because of both temperament and the environments in which they have lived, are blessed with good coping abilities. They understand what is required, and they do it. Many parents express great admiration for their childs strength and grace in the face of adversity. Stephan has not had any behavior problems while being treated for his initial diagnosis (age 5) or his relapse (age 7). He has...

Coping with Procedures

Mommy, I didn't cry but my eyes got bright. the purpose of this chapter is to prepare both child and parent for several common procedures by providing detailed descriptions of each. Since almost all procedures are repeated frequently during the long treatment for childhood leukemia, it is important to establish a routine that is comfortable for you and your child. The procedure itself may cause discomfort, but a well-prepared, calm child fares far better than a frightened one.

Cost

The external catheter requires supplies for cleaning, dressing, and irrigating the line, but the subcutaneous port does not. The port itself, however, is usually more costly than the external catheter. Both generally require operating room time and the services of a surgeon and an anesthesiologist. The port also requires these services for its eventual removal the external catheter is removed in the clinic with only intravenous sedation. A good rule of thumb to consider is that, if the lines...

Cranial radiation

To receive cranial radiation, children are given appointments for ten weekdays, the same time each day. They usually have the weekend off. At some institutions, children go twice a day for ten days. When the parent and child arrive, they must check in at the front desk. The technologist comes out to take the child into the treatment room. Often, the parent accompanies her young child into the room. If the child requires anesthesia, it is usually given in the treatment room. The technologist...

Dealing with hospital billing

Unfortunately, problems with billing are the norm rather than the exception for parents of children with leukemia. Here are two typical experiences Insurance was an absolute nightmare. It almost gave me a nervous breakdown. After all we go through with our children, to have to deal with the messed-up hospital billing was just too much it was the worst part of the whole experience. We would stack the bills up and try to go through them every two or three months. Our insurance was supposed to pay...

Death and Bereavement

The loss of my son has illuminated for me the true definition of love the giving of oneself, body and spirit, to another His death, like that of any child, is a story of withered hopes and unfulfilled dreams. In this book I have tried to capture a few remembered strains of the brief, glad music of his life. These are all I have of him now, and they comfort me even as they Gordon Livingstone, MD Only Spring the death of A child causes almost unendurable pain and anguish for loved ones left...

Definition of a blast

Blast is a short name for an immature white blood cell such as lymphoblast, myeloblast, or monoblast. Normally, less than 5 percent of the cells contained in healthy bone marrow at any one time are blasts. Normal blasts develop into mature, functioning white blood cells, and are not usually found in the bloodstream. Leukemic blasts remain immature, multiply continuously, provide no defense against infection, and may be present in large numbers in the bloodstream and bone marrow.

Denial

In the first few days after diagnosis, many parents use denial to shield themselves from the terrifying situation. They simply cannot believe that their child has a life-threatening illness. Denial may serve as a useful method to survive the first few days after diagnosis, but a gradual acceptance must occur so that the family can begin to make the necessary adjustments to cancer treatment. Life has dramatically changed. Once parents accept the doctor's prognosis, push their fears into the...

Depression

Feeling sad or depressed may occur in parents of children with cancer. If you are consistently experiencing any of the following symptoms, it would probably be helpful to get professional help changes in sleeping patterns (sleeping too much, waking up frequently during the night, early morning awakening), appetite disturbances (eating too little or too much), loss of sex drive, fatigue, panic attacks, inability to experience pleasure, feelings of sadness and despair, poor concentration, social...

Diagnosing leukemia

A tentative diagnosis of leukemia is made after a physical examination of the child and microscopic analysis of a blood sample have been conducted. Physical findings may include pale skin bruising or unusual bleeding enlarged liver, spleen, or lymph nodes weakness and fever (with or without a specific site of infection). Parents or children may describe irritability, night sweats, fatigue, bone pain, and loss of appetite. Blood tests may show decreased red cells, decreased platelets, and either...

Dishonesty

As stated earlier, children feel safe when their parents are honest with them. If the parents start to keep secrets from the child to protect her from bad news, the child feels isolated and fearful. She might think, If mom and dad won't tell me, it must be really bad, or, Mom won't talk about it. I guess there's nobody that I can tell about how scared I am. Denial is a type of unconscious dishonesty. This occurs when parents say things to children such as, Everything will be just fine, or, It...

Drug reimbursement

Pharmaceutical Research and Manufacturers of America Directory of patient assistance programs 1100 15th Street, NW Washington, DC 20002 Physican hot line (800) 762-4636 List companies that provide prescription medicines free of charge to physicians whose patients might not otherwise have access to necessary medicines. Centers for Medicare & Medicaid Services Medicare Prescription Drug Assistance Program 7500 Security Boulevard Baltimore, MD 21244-1850 (410) 786-3000 Provides information on...

Dying in the hospital

Some children die in the hospital suddenly, while others slowly decline for weeks or months. If your child is dying slowly, you may have choices about where your child will spend her last days. There are no right or wrong choices. Much depends on the number of people available to provide care at home, and how comfortable they are doing so. Many parents ask their child where they prefer to be. Some like to be with the nurses in a hospital environment, while others want to stay at home with...

E

Ear infections, 218 Early filling, 270 Eating habits. See Nutrition Ecchymoses, 1, 15 Echinacea, 208 Echocardiogram EKG, 54 Education. See School issues Education for All Handicapped Children Act, 300 Electromagnetic fields (EMFs), 17 Elks Club, 267 Elspar, 176-177 Emergency bags, 127 EMLA cream, 47, 205 for finger pokes, 55 for IV lines, 58 for subcutaneous injections, 59-60 for subcutaneous ports, 142 Emotional issues, 335-337. See also Grief bibliography information, 485 ending treatment,...

Early or delayed puberty

Some young children who receive radiation to the brain do not experience puberty at the appropriate age. A very small percentage of children enter precocious puberty, which means that puberty begins several years earlier than normal. This is most common in children who also have impaired growth. Conversely, puberty in some children is significantly delayed. Teenage girls who do not show signs of puberty pubic and underarm hair, breast development should be evaluated by a pediatric...

Eating problems

Most children have major nutritional problems while on chemotherapy. Chapter 14, Nutrition, explains eating problems such as anorexia (lack of appetite), food aversions, overeating, and other nutrition-related problems induced by chemotherapy and radiation. There were times during my son's protocol that I felt he suffered more from the side effects of treatment than from the disease. It was emotionally painful for me to watch him go through so much. I think one of the hardest moments for me was...

EchocardiogramEKG

Several drugs used to treat CNS tumors can damage the muscle of the heart, decreasing its ability to contract effectively. Many protocols require a baseline echocardiogram to measure the hearts ability to pump before any chemotherapy drugs are given. Echocardiograms are then given periodically during and after treatment to check for heart muscle damage. An echocardiogram uses ultrasound waves to measure the amount of blood that leaves the heart each time it contracts. This percentage (blood...

Eligibility for special education

There are 13 eligibility categories for special education under the federal law. Other health impairment (OHI) Specific learning disability Speech or language impairment Most children with leukemia tend to fall under the category of OHI. The federal definition of OHI is Having limited strength, vitality, or alertness, including a heightened alertness to environmental stimuli, that results in limited alertness with respect to the educational environment, that is due to 1. Chronic or acute health...

Emotional issues

Many parents describe ending treatment as almost as wrenching an experience as diagnosis. Families begin to experience the gamut of emotions from elation to terror months before the final day. I had a lot of anticipatory worry it started about six months before ending treatment. By the last day of treatment I had been worrying for months, so it was just a relief to quit. I expected to feel a profound sense of relief when treatment ended. The six months prior to ending treatment I felt almost...

Emotional responses

The shock of diagnosis results in an overwhelming number of intense emotions. The length of time people experience each of these feelings greatly differs, depending on preexisting emotional issues and coping strategies. These preexisting states vary from person to person. Those whose worlds are relatively stable tend to be better able to move quickly through powerful emotions than those who are also dealing with other crises. Many of these emotions reappear at different times during the child's...

Emotional responses of the siblings

Brothers and sisters are shaken to the very core by leukemia in the family. Their parents, the leaders of the family clan, sometimes have no time, and little energy, to focus on the siblings. During this major crisis, they sometimes feel they have no one to turn to for help. If you recognize these strong, ever-changing emotions of siblings as normal, not pathological, you will be better able to help your child talk about and cope with his strong feelings. The time after diagnosis is emotionally...

End of Treatment and Beyond

The best formula for longevity Have a chronic disease, and cure it. the last day of treatment is a time for both celebration and fear. Most families are thrilled that the days of pills and procedures have ended, but some fear a future without drugs to keep the disease away. Concerns about relapse are an almost universal parental response, but for the majority of families, the months and years roll by without recurrence of leukemia. Many children and teens quickly return to excellent physical...

Enrollment in clinical trials

The enormous improvements in treating childhood leukemia have been the direct result of clinical trials. Most clinical trials compare the best proven existing therapy with one or more therapies that have been proven effective in smaller studies, and that are hoped to offer improvements over the existing proven (standard) therapy. These studies are designed such that no one knows which treatment is superior, a concept termed equipoise. It would be unethical to treat any child according to any...

Failure to engraft

Engraftment means that the donated stem cells take up residence in the child's bones and begin to produce healthy blood cells. When a child has received HLA-matched marrow from a sibling, engraftment failure occurs in less than 5 percent of these children. In contrast, when children have received marrow from partially HLA-matched family members or from unrelated donors, failure of engraftment (graft rejection) is more frequent, unless more intensive conditioning regimens are used. The pace of...

Family and Friends

Shared joy is double joy, shared sorrow is half sorrow. the interactions between the parents of a child with cancer and their extended family and friends are complex. Potential exists for loving support and generous help, as well as for bitter disappointment and disputes. The diagnosis of leukemia creates a ripple effect, first touching the immediate family, then extended family, friends, coworkers, schoolmates, church members, and the entire community. This chapter discusses some of the...

Family and Medical Leave

In August 1993, the Family and Medical Leave Act (FMLA) became federal law in the US. FMLA protects job security of workers in large companies who must take a leave of absence to care for a seriously ill child, to take medical leave because the employee is unable to work because of his or her own medical condition, or for the birth or placement of a child for adoption or foster care. The Family and Medical Leave Act Applies to employers with 50 or more employees within a 75-mile radius....

Feeding by tube and IV

Tube feedings or intravenous nutrition are necessary for some children with leukemia. These types of feedings do not represent a failure on the part of parents or children. Although feeding by tube and IV may require additional hospitalization, it helps if parents understand the benefits clearly. If a child with cancer becomes malnourished, events are set in motion that can have grim consequences. As appetite and weight decrease, the childs ability to repair cellular damage caused by treatment...

Feelings communciation and behavior

How to Talk So Kids Will Listen .and Listen So Kids Will Talk, 20th ed. New York Rawson, Wade Publishers, 1999. The classic book on developing new, more effective ways to communicate with your children, based on respect and understanding. Highly recommended. Kurcinka, Mary Sheedy. Raising Your Spirited Child A Guide for Parents Whose Child Is More Intense, Sensitive, Perceptive and Energetic. New York Harper Collins, 1992. Reassuring guide for how to...

Financial help

2901 Breezewood Lane Knoxville, TN 37921 (800) 578-5284 or (865) 938-5281 http www.cfoa.org Helps defray cancer-related expenses not covered by insurance. Consumer Credit Counseling Foundation A national, nonprofit consumer credit counseling agency that provides 24-hour toll-free credit counseling over the telephone. Provides help with budgets, payments, and debt collection. GCM is a nonprofit credit counseling agency that offers free debt management and educational programs to help financially...

Find a contact person

As soon as possible after diagnosis, call your insurance company and ask who will be handling your claims. Explain that there will be years of bills with frequent hospitalizations, and it would be helpful to always deal with the same person. Insurers may be able to provide a contact person for claim review or special needs. Ask the contact person to answer any questions that you have on benefits. Try to develop a cooperative relationship with your contact person, because he can really make your...

Finding a donor

Finding a bone marrow donor can be a stressful and time-consuming task. The search may begin after relapse for children with ALL, in first remission for children with AML or some types of high-risk ALL, during the chronic phase for children with CML, and soon after diagnosis for children with JMML. In some families, tests show that a sibling or parent is a partial or identical match. Other children, especially those from minority groups not well-represented in the donor files, can wait months...

Finding an oncologist

Usually, parents do not have the luxury of time in choosing a pediatric oncologist. At diagnosis, the family is usually referred to the nearest pediatric center of excellence. The young patient may be assigned the fellow or attending who happens to be on call at the time of diagnosis. During induction and consolidation, your child may see a myriad of doctors. A permanent assignment is usually made for all outpatient treatment. Be sure that you are working with an oncologist who works with the...

Followup schedule

Protocols for clinical trials require specific follow-up schedules. For instance, after treatment for average-risk ALL, your child may need monthly physical exams and a monthly CBC for the first year off treatment, and a less frequent schedule for the following years. Find out from the oncologist what the required schedule is, and where the appointments will be. Make sure that your child understands that after treatment ends doctor appointments and blood draws will still be an occasional...

Foreword

EVERY YEAR IN THE UNITED STATES approximately 12,000 children and adolescents under the age of twenty years are diagnosed with cancer. Of these children, approximately 2,500 will be afflicted with acute lymphoblastic leukemia and 500 with other types of childhood leukemia. Significant progress has been made in the treatment of childhood cancer over the past four decades, best illustrated by the dramatically improved cure rate for children diagnosed with acute lymphoblastic leukemia. A leading...

Forming a Partnership with the Medical Team

It is our duty as physicians to estimate probabilities and to discipline expectations but leading away from probabilities there are paths of possibilities, toward which it is our duty to hold aloft the light, and the name of that light is hope. it is vitally important that parents and the healthcare team establish and maintain a relationship based on excellent medical care, good communication, and caring. In this partnership, trust is paramount. Unlike children with some other diseases,...

Free air services

National Office 50 Fullerton Court, Suite 200 Sacramento, CA 95825 (877) 247-5433 (877-AIRLIFE) or (916) 641-7800 http www. airlifeline.org A national nonprofit charitable organization of over 1,500 private pilots who fly ambulatory patients who cannot afford the cost of travel to medical facilities for diagnosis and treatment. (888) 260-9707 or (918) 745-0384 http www.aircareall.org A nationwide association of humanitarian flying organizations that provide flights for healthcare, compassion,...

Getting a second opinion

Conscientious doctors welcome consultations and encourage second opinions. Because there are many gray areas in medicine where judgment and experience are as important as knowledge, consultations are frequent. Many insurance companies require second opinions. If, after discussions with the doctor, you are still uneasy about any aspect of your childs medical care, you should not hesitate to seek another opinion. There are two ways to get a second opinion see another specialist or ask the childs...

Guidelines for calling the doctor

Sometimes parents are reluctant to call their child's physician with questions or concerns. Here are some general guidelines for determining when a call is necessary Temperature above 101 F (38.5 C) Unusual bleeding, bruising, or cuts that won't heal Pain or swelling at chemotherapy injection site Any severe pain that cannot be explained Exposure to chicken pox or measles Severe headache or blurred vision Constipation lasting more than two days Painful urination or bowel movements Whenever...

Having a sister with leukemia

Alison Leake (6 years old) describes the experience of having a sister with leukemia I think having a sister with leukemia is not fun. My mom paid more attention to Kathryn my sister I had to stay with Daddy Mommy picked Kathryn up and not me I wanted my sister's PJs. Guess what I did not get them Although my mommy wanted to stay with me, she did not want to leave my sister alone. Sometimes I felt like I was going to throw up. But now it has been five years since she has stopped having...

Helpful things for family to do

Families differ in what is truly helpful for them. The suggestions in this chapter are snapshots of what some families appreciated. True listening and working on maintaining the relationship is paramount. Connections can be made in many different, unique, and personally meaningful ways. Try to support the family in ways that respect their wishes while honoring their privacy. Be sensitive to the emotional state of both child and parent. Sometimes parents want to talk about the leukemia sometimes...

Helpful things for friends to do

Mother Theresa once said, We can do no great things only small things with great love. It is a given that the family of a newly diagnosed child is overwhelmed. The list of helpful things to do is endless, but here are some suggestions from parents who have traveled this hard road. One of the nicest things that friends did was to bring us a huge picnic basket full of food to the hospital. We spread a blanket on the floor, Erica crawled out of bed, and the entire family sat down together and ate....

Hemoglobin

Red cells contain hemoglobin, the molecules that carry oxygen and carbon dioxide in the blood. Measuring hemoglobin gives an exact picture of the ability of the blood to carry oxygen. Children may have low hemoglobin levels at diagnosis and during the intensive parts of treatment. This is because both cancer and chemotherapy decrease the bone marrows ability to produce new red cells. During maintenance, your childs hemoglobin level will be higher than during induction and consolidation, but...

Honesty

Above all else, children need to be able to trust their parents. They can face almost anything, as long as they know that their parents will be at their side. Trust requires honesty. For your ill child and her brothers and sisters to feel secure, they must always know that they can depend on you to tell them the truth, be it good news or bad. This reduces isolation and a sense of disconnection within the family. We were always very honest. We felt that if she couldn't trust us to tell her the...

Hope

After being buffeted by illness, anger, fear, sadness, grief, and guilt, most parents welcome the growth of hope. Hope is the belief in a better tomorrow. Hope sustains the will to live and gives the strength to endure each trial. Hope is not a way around, it is a way through. The majority of children conquer childhood leukemia and live long and happy lives. There is reason for hope. Many families discover a renewed sense of both the fragility and beauty of life after the diagnosis. Outpourings...

Hospital social workers

Although the need for skilled pediatric social workers is widely recognized, shrinking hospital budgets often prevent adequate staffing. If you bring your child to a children's hospital well staffed with social workers, child life specialists, and psychologists, consider yourself lucky. Sadly, millions of dollars are spent on technology, while programs that help people cope emotionally are often the first to be discarded. If your pediatric center offers no emotional support, explore the other...

How chemotherapy drugs are given

The five most common methods for giving drugs during treatment for leukemia are Intravenous (IV). Medicine is delivered directly into the bloodstream through a right atrial catheter or IV needle in the arm or hand. Intravenous medicines may be administered in a few minutes (slow IV push) or as an infusion over a number of hours. Oral. Drugs, taken by mouth in liquid, capsule, or tablet form, are absorbed into the blood through the lining of the stomach and intestines. Intramuscular. Drugs that...

How to get information from your library or computer

Most libraries now have a computerized database of all materials available in their various branches. Some libraries may still use a manual card catalog system. Ask a librarian if you need help learning to use these systems. A librarian can also tell you how to request a book from another branch and how to put a book on hold if it is currently checked out. If a book is not in your librarys collection, ask the librarian if she can obtain it from another library by requesting an inter-library...

How to use this book

While researching this book, I was repeatedly told by parents to write the truth. Because the truth varies for each person, more than 100 parents, children with leukemia, and siblings share portions of their experiences. This book is full of such snapshots in time, some of which may be hard to read, especially by those families of children newly diagnosed. Here are my suggestions for a positive way to use the information contained in this book Consider reading only sections that apply to the...

Human leukocyte antigens HLA

Every individual has proteins, called human leukocyte antigens (HLA), on the surface of their cells. These proteins allow the persons immune system to distinguish the body's own cells from those of another person. There is a strong association of some HLA types with a persons ethnic background. Scientists look at six (or eight) HLA antigens to determine a persons HLA type. Two people are considered to be a match if all six (or eight) antigens are identical. If one or more sites do not match, it...

Il

SUSPECTED ABNORMAL POPULATIONS Variant Lymphocytes USER-DEFINED ABNORMALITIES Leukopenia Anemia WBC 5.0-13.0 NEU 1.0-6.6 35.0-75.0 N LYM 2.5-9.0 16.0-56.0 L MONO 0.0-1.2 0.0- 8.0 M EDS 0.0-0.8 0.0- 5.0 E BASO 0.0-0.4 0.0- 3.0 B RBC 4.20-5.20 HGB 12.5-15.0 HCT 33.0-45.0 MCV 76.0-87.0 MCH 24.0-33.0 MCHC 31.4-35.8 RDW 8.0-14.0 when the hematocrit goes below 18 to 19 percent. Even during maintenance the bone marrow is partially suppressed, so the hematocrit is often in the low to mid-thirties. This...