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...

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...

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....

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...

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...

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...

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...

Calendar

Many parents reported great success with the calendar system. They buy a new calendar each year and hang it in a convenient place such as next to the telephone. You can record counts on the calendar while talking on the phone to the nurse or lab technician and take the calendar with you to all appointments. Each year I purchase a new calendar with large spaces on it. I write all lab results, any symptoms or side effects, colds, fevers, and anything else that happens. I bring it with me to the...

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...

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...

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...

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....

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...

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...

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...

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...

Dosages

Dosages vary among protocols however, most are based on your child's weight or body surface area (BSA). BSA is calculated from your childs weight and height and is measured in meters squared (m2). Doses of medications your child is scheduled to receive should be recalculated at the beginning of each new phase of treatment. Recalculating doses more frequently is necessary if your child has experienced significant weight gain or loss (more than 10 percent of initial weight). My daughter's BSA...

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...

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...

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...

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...

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...

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 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...

Improving communication and discipline

Parents suggest the following ways to keep the family on a more even keel. Make sure that the family rules are clearly understood by all of the children. Stressed children feel safe in homes that are very structured with regular, predictable routines. After yet another rage by my daughter with leukemia, we held a family meeting to clarify the rules and consequences for breaking them. We asked the kids (both preschoolers) to dictate a list of what they thought the rules were. The following was...

Increased appetite and weight gain

When children are given high doses of steroids such as prednisone or dexamethasone, they develop voracious appetites. They are hungry all the time, develop food obsessions, and frequently wake parents up during the night begging for another meal. Early in her treatment when Carrie Beth was taking dexamethasone, she would start hitting me in the face in the middle of the night demanding food. I learned to have a bag of snacks and a bottle sitting next to the bed, so I could just hand them over...

Keeping medical records

Think of yourself as someone with two sets of books, the hospital's and yours. If the hospital loses your child's chart or misplaces lab results, you will still have a copy. If your child's chart becomes a foot thick, you will still have your simple system that makes it easy to spot trends and retrieve dosage information. The following are suggested items that you should record Dates and results of all lab work Dates of chemotherapy, drugs given, and dose All changes in dosages of medicine Any...

Keeping teacher and classmates involved

While your child is hospitalized, it is vital to his well-being to stay connected with his teacher and classmates. Children attend school not only for instruction, but also to develop communication and social skills. The teacher should be getting updates through the advocate, but the parent can help by calling the teacher periodically and bringing notes or taped messages to the classroom. The following are suggestions for keeping the teacher and classmates involved Visit http...

Keeping the household functioning

Every family of a child with leukemia needs massive assistance. It is important for families to recognize this early and learn not only to accept aid gracefully but also to ask for help when needed. As discussed earlier in the chapter, most family members, friends, neighbors, and church members want to help, but they need direction from the family on what is helpful but not intrusive. In families where both parents are employed, decisions must be made about the jobs. It is better, if possible,...

Keeping up with schoolwork

A child who is out of school longer than two weeks for any medical reason is entitled by law to instruction at home or in the hospital. The ideal time to request this service is as soon as you find out your child may remain in the hospital longer than two weeks. A letter is required from the physician stating the reason and expected length of time for this service. My daughter Julia was diagnosed with T-cell ALL when she was in second grade. We had her tutored at home by a district-sponsored,...

Local anesthetics to prevent pain

Two products commonly used to prevent pain are EMLA cream and Numby Stuff. How given Applied to the skin and covered with an airtight dressing one to two hours before procedures such as spinal tap, bone marrow aspiration, or injection. How it works Emulsion that contains two anesthetics, lidocaine and prilocaine. Note May take longer than an hour to achieve effective anesthesia in dark-skinned individuals. We use EMLA for everything finger pokes, accessing port, shots, spinal taps, and bone...

Longterm side effects

Increasing numbers of children are being cured of their disease and surviving years after a stem cell transplant. The intensity of the treatment before, during, and after transplant can have major effects that do not become apparent for months or years. This section will describe a few of the major long-term side effects that sometimes develop after a transplant. The transplant center was very clear about all of the potential problems. That was good, for it prepared me. My attitude is watch for...

Losing friends

It is an unfortunate reality that most parents of children with leukemia lose friends. For a variety of reasons, some friends just can't cope and either suddenly disappear or gradually fade away. Many times this can be prevented by calling them to keep them involved, but sometimes, they just can't handle the stress. I had a friend who really thought herself to be empathetic, except that she just couldn't deal with hospitals. She said that they made her uncomfortable, so she wouldn't visit. I...

Losing your temper excessively

All parents lose their temper sometimes. They lose their tempers with spouses, healthy children, pets, even strangers. But it is especially painful when the target of the anger is a very sick child. Abuse of spouses and children increases at times when either or both spouses feel incompetent and powerless. If you find yourself unable to control your temper, seek professional counseling. I had my share of temper tantrums. The worst was when he was having his radiation. I tried to make him eat...

Loss of appetite

Anorexia, or loss of appetite, is one of the most common problems associated with the treatment of cancer. Children suffering from nausea and vomiting, diarrhea or constipation, altered sense of smell and taste, mouth sores, and other unpleasant side effects understandably do not feel hungry. Loss of appetite is most pronounced during the intensive periods of treatment, such as induction, consolidation, or delayed intensification. If your child loses more than 10 to 15 percent of her body...

Low blood counts

Bone marrow, the spongy material that fills the inside of the bones, produces red cells, white cells, and platelets. Chemotherapy drugs damage or destroy the cells inside the bone marrow and dramatically lower the number of cells circulating in the blood. Frequent blood tests are crucial in determining whether the child needs transfusions. Most children treated for leukemia require many transfusions of red cells and platelets. When the number of infection-fighting white cells is low, the child...

M

Magic Mouthwash, 232 Magnesium citrate, 225 Maintenance leukemia (ALL), 26 normalcy and, 351 subcutaneous ports during, 143 Marinol, 196 Marital issues, 101-104 coping styles, 103 Masks for radiation therapy, 239 Masons, 267 Massage, 205-206 for pain management, 47 Matched unrelated donor (MUD), 395-396 Meals, friends providing, 88 Meat meat substitutes, 272-273 Medicaid, 266 fund raising and, 268 Medical Care Management Corporation, 405 Medical expenses, 256-257. See also Financial issues...

Make mealtime fun

Here are some suggestions on how to make mealtime more fun Try to take the emphasis off eating food because its good for you and focus instead on setting a mood of enjoying each others company while sharing a meal. Encourage good conversation, tell stories and jokes, perhaps light some candles. Make one night a week restaurant night. Use a nice tablecloth, candles, allow the children to order from a menu, and pretend the family is out for a night on the town. Since any change in setting can...

Making a decision

After reviewing the information presented and the comparison chart, discuss with the doctor his opinion about the merits of each catheter. Talk over the pros and cons with your child if she is old enough. Then make the rounds of the cancer ward, asking both parents and children which type of catheter they chose and why. You will probably hear many opinions on the benefits and drawbacks for each catheter. When we asked one of the young children on the ward which catheter she had, she pulled up...

Miscellaneous insurance issues

Loss of insurance coverage is every parents worst nightmare. If you must change jobs or move while your child is on treatment, speak to your employers benefit manager promptly. It is advisable to continue your insurance coverage with your previous employer through the COBRA plan until you are certain that your new insurance coverage is in effect. Although this may impose some financial strain on your family for several months, it will ensure your childs coverage without interruption. Such...

More on placement and modifications

IDEA intentionally falls short on detailing specific types of educational placement, modifications, and related services. Because options are open, your childs IEP should reflect those programs and services uniquely appropriate for his needs. Advocates, disability organizations, and your childs medical team, teachers, and therapists can assist you in determining which options best suit your child, although ultimately you know your child best. The following are placement options listed from the...

MUGA scan

A multiple-gated acquisition (MUGA) scan tests cardiac function. It is more sensitive than an echocardiogram. Prior to having a MUGA scan, children are sometimes given a sedative to help them relax and stay perfectly still for the fifteen- to twenty-minute test. An injection of red cells or proteins tagged with a mildly radioactive substance (called technetium) is given through an IV The child lies on a table with a large movable camera above. This special camera records sequential images of...

My brother has leukemia

Eight-year-old Amanda Moodie experienced many ups and downs when her brother Sometimes having a brother with leukemia is fun, like when my family goes on the Fantasy Flight to the North Pole, and going to the special summer camp, and getting special privileges at Disney World. But other times, it can be really hard, especially when William gets put in the hospital. Right now, he can't leave his room in the hospital, and the doctors wear masks when they come in. I HATE seeing that. And he stays...

Notifying the family

Notifying relatives is one of the first painful jobs for the parent of a child newly diagnosed with cancer. In times of crisis, family is refuge, and the news is usually quickly shared. I called my mom and told her to make all the phone calls to family and friends. I couldn't choke out the word leukemia yet. Then I called our pastor. I called my sister and asked her to take care of telling everyone. She called my other sister, and together they told my frail mother. I waited three days after...

Organized fund raising

Many communities rally around a child with cancer by organizing a fund. Help is given in various ways, ranging from donation jars in local stores to an organized drive using all of the local media. There are many pitfalls to avoid in fund raising, and great care must be exercised to protect the privacy of the sick child as much as possible. If your child is on or seeking Social Security or Medicaid eligibility, funds must be held in a special needs trust and paid directly to providers. If the...

Overindulgence of the ill child

Overindulgence is a very common behavior of parents of children with cancer. I bought my daughter everything that I saw that was pretty and lovely I kept thinking that if she died she would die happy because she'd be surrounded by all these beautiful things. Even when I couldn't really afford it, I kept buying. I realize now that I was doing it to make me feel better, not her. She needed cuddling and loving, not clothes and dolls. Four days into Selah's diagnosis, we were doing anything to keep...

Overprotection of sick child

For a child to feel normal, he needs to be treated as if he is normal. Ask the doctor what changes in physical activity are necessary for safety, and do not impose any additional restrictions that go beyond this on your child. Let the child be involved in sports or neighborhood play, and even though it is hard, stop yourself from constant reminders to be careful. My 6-year-old son finished his radiation and is still on chemo for his cancer I feel like I have to lighten up in order for life to...

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Pain management, 44-50 death in hospitals, 427 medications, 47-50, 200-204 psychological methods, 44-47 Pancreatitis, 146 Pancytopenia, 185 Parental illness, 4 Parent-to-parent programs, 160-161 Parking at hospitals, 126 Parties at end of treatment, PDQ, treatment information from, 389 Pediasure, 284 Pediatric oncologists, 3 Pediatric residents, 107 PEG-Asparaginase, 176-177 Pentamidine, 195 Percocet, 204 Peri-colace, 225 Peridex, 231 Peripheral blood stem cell transplants (PBSCTs), 398-399...

Parent advice

Several parents whose children have completed therapy offer the following suggestions on how to handle the inevitable eating problems of children on therapy. Doctors sometimes reassure parents by saying, His appetite will return to normal. Don't be surprised if this does not happen until long after the most intensive parts of treatment are completed. Let the child control what type of food and how much he wants. In the beginning, any food is good food. Buy a juicer and use it every day. This...

Partnership with medical team

Advice to Doctors and Other Big People from Kids. Berkeley, California Celestial Arts, 1991. Book written by children with catastrophic illnesses offers suggestions and expresses feelings about health care workers. Wise and poignant, it reminds us how perceptive and aware children of all ages are, and how absolutely necessary it is to involve them in medical decisions. Keene, Nancy. Working with Your Doctor Getting the Healthcare You Deserve. Sebastopol,...