Design of clinical trials

There used to be four primary pediatric cancer research groups in North America Children's Cancer Group (CCG), Pediatric Oncology Group (POG), National Wilms' Tumor Study Group (NWTSG), and Intergroup Rhabdomyosarcoma Study Group (IRSG). In July 1998, the four groups decided to form a single pediatric cancer clinical trials organization. The groups officially merged in 2000 under the new name, Chil-drens Oncology Group (COG). New trials developed for children with cancer will be offered under...

The transplant

Prior to the actual transplant, the patients bone marrow is destroyed or suppressed using high-dose chemotherapy with or without radiation. This portion of treatment is called conditioning. The purpose of the high doses of chemotherapy and radiation is to kill most or all of the remaining cancer cells in the body and to make room in the bones for the new bone marrow or stem cells. For allogeneic transplants, the conditioning also suppresses the patients immunity in order to allow the donor...

Autologous stem cell transplant

In an autologous stem cell transplant, the stem cells come from the childs own blood or bone marrow. Some transplant centers use various methods to try to kill (purge) any leukemic cells that may be in the autologous product. There are ongoing studies to evaluate the risks and benefits of purged versus unpurged autologous transplants and determine whether autologous transplantation is better than conventional chemotherapy. After the marrow is harvested and treated, it is cryopreserved (frozen)....

Environmental factors

Exposure to ionizing radiation and certain toxic chemicals may predispose individuals to leukemia and other problems involving the bone marrow. Many Japanese who were exposed to fallout from the atomic bomb during World War II and some of the people living near the Chernobyl accident in the Ukraine have developed leukemia. However, children exposed to irradiation from the bombs while in the mothers womb did not have an increased risk of developing leukemia. Chronic exposure to benzene has been...

Concern for sick brother or sister

Children really worry about their sick brother or sister. It is hard for them to watch someone they love be hurt by needles, sickened by medicines, lose weight, and be bald. It is hard to feel so healthy and full of energy when the brother or sister has to stay indoors because of weakness or low blood counts. The siblings may be old enough to know that death is a possibility. There are plenty of reasons for concern. Christine's younger sister has really developed the nurturing side of her...

Identifying cognitive late effects

State-of-the-art treatment for childhood cancer has increasingly resulted in greater numbers of long-term survivors, but not without cost. Some survivors suffer neurotoxic effects, which cause changes in their learning style as well as social behavior. These differences in school may be treatment related, may have been preexisting and aggravated by treatment, or may be caused by prolonged absences from school and friends. It is important that parents and educators remain vigilant for potential...

A balanced diet

A good diet includes sufficient calories to ensure a normal rate of growth, fuels the body's efforts to repair and replace damaged normal cells, and provides the energy the body needs to break down the various chemotherapy drugs given and excrete their by-products. Research has shown that a well-nourished body will Tend to have fewer side effects Recover faster from treatment When the body becomes malnourished, body fat and muscle decrease. This leads to Weakness, lack of energy, weight loss...

Paying for the transplant

Some transplants are considered standard of care, so insurers cover the procedure without problems. However, you will need to research carefully whether your insurance company considers the type of transplant proposed for your child to be experimental and therefore not covered. Most insurance plans have a lifetime cap, and many only pay 80 percent of the costs of the transplant up to the cap. Often, transplant centers will not perform the procedure without...

S

See also Grief at diagnosis, 10 of siblings, 318 Safe sexual practices, 376 Salivary tumors, 250 Scandi-shake, 284 School issues, 288-312. See also Learning disabilities Special education cognitive late effects, identifying, 299-310 communicable diseases, avoiding, 296-297 communication with schools, classmates, 289-290 keeping up with work, 293-294 preschoolers, 297-298 resources for, 488-489 returning to school, 292-296 sibling issues, 292 terminally ill children, 310-311 videotape...

Infections

Most infections following transplant come from organisms within the body (e.g., cytomegalovirus, mouth and gut bacteria). Good hand washing by parents, visitors, and health care workers can help decrease the risks of infections from bacteria and fungi. The immune systems of healthy children quickly destroy any foreign invaders this is not so with children who have undergone a transplant. The immune systems of these children have been destroyed by chemotherapy and radiation to allow the healthy...

Trusting your child

Sometimes, children will say what they need to do to persevere. It may not be the way the parents cope it may make them nervous. But, it is the child or teens way to make peace with the day-to-day reality of diagnosis and treatment. Early one summer morning, 12-year-old Preston and I left the hospital after a week-long stay for his high-dose methotrexate infusion. He had been heavily sedated, and was groggy and shaky on his feet. My husband and daughter were getting ready to go on a boat trip,...

What is normal

After years of treatment, families grapple with the idea of returning to normal. Unfortunately, most parents don't really know what normal is any longer. Parents realize that returning to the carefree pre-cancer days is unrealistic, that life has changed. The constant interaction with medical personnel is ending, and a new phase is beginning in which routines do not revolve around caring for a sick child, giving medicines, and keeping clinic appointments. While it is true that the blissful...

What kids really eat

The previous part of the chapter listed ideas for increasing calories and making food more appealing. What follows are accounts of what several kids really ate while on chemotherapy. You'll notice how varied the list is, so experiment to see what your child finds palatable. Remember also that children's tastes and aversions may change as time passes while on treatment. Judd craved chicken chow mein and fried rice takeout from a Chinese restaurant. He also loved SpaghettiOs and hot dogs. I let...

My brothers a legend

To Erin Hall (18 years old), her brother has become a legend by surviving childhood cancer. I'm really proud of my brother Judson for handling everything so well. During those years, there were times when I was jealous of him, not only for the attention he received, but for his courage as well. This little boy was going through so much, and I still cowered at getting my finger pricked. As I look back, I wonder if I would have been able to make it through, not only physically, but emotionally as...

Table of Contents

Diagnosis Where should your child receive Physical responses Emotional 2. Leukemia Leukemia is a disease of the blood Who gets Diagnosing leukemia Best treatments for Types of leukemia Acute lymphoblastic leukemia (ALL) Acute myeloid leukemia (AML) Chronic myelogenous leukemia (CML) 32 Juvenile myelomonocytic leukemia (JMML) 34 Telling your 3. Coping with Planning for Pain 4. Clinical Trials Enrollment in clinical Standard Types of clinical Design of clinical trials Supervision of clinical...

Treatment for ALL

ALL is one of the most curable forms of childhood cancer. To receive the best available treatment, it is essential that the child with ALL be treated at a pediatric medical center by board-certified pediatric oncologists with extensive experience treating acute leukemia. The intense treatment for ALL begins within days of diagnosis and requires aggressive supportive care. The goal of treatment is to achieve a complete remission by obliterating all leukemia cells as quickly as possible. Complete...

Things that do not help

Please do not say to the parents I know exactly how you feel. Its a blessing her suffering has ended. Thank goodness you are young enough to have another child. At least you have your other children. Be brave. Time will heal. God doesn't give anyone more than they can bear. It was God's will. He's in a better place now. God must have needed another angel. Its lucky this happened to someone as strong as you. Don't worry, in time you'll get over it. Why did you decide to cremate him How is your...

C

Calendar system, 253-254 Calorie-boosting guidelines, 278 Camps. See Summer camps Camp Watcha-Wanna-Do, 159 Canada Candlelighters Childhood Cancer Foundation Canada, 463 Employment Insurance Act, 100-101 Individual Education Plan (IEP) in, 308 (JAN) in, 379 medical expense deductions, 257 medications, paying for, 267 schooling, legal rights to, 302 stem cell transplantation issues, 406 Canadian Cancer Society, 463 Candlelighters, xvii-xviii, 90, 160-161, 463 Captain Chemo, 173 Cardiac...

Eating difficulties

The vast majority of children undergoing stem cell transplants require intravenous nutrition during their convalescence. Some centers will feed children using tubes inserted through the nose into the stomach or small intestine. Various factors can contribute to feeding problems. These include pre-existing nutritional problems, side effects of conditioning chemotherapy, nausea and vomiting, mouth sores, and infections of the gastrointestinal tract. Your child may experience a few, some, or all...

Free medicine programs

Many drug companies have programs to provide free medicines (including chemotherapy) to needy patients. Eligibility requirements vary, but most are available to those not covered by private or public insurance programs. You can get a free copy of the Directory of Pharmaceutical Patient Assistance from the Pharmaceutical Manufacturers Association at http www.phrma.org patients. Their toll-free hot line for physicians is (800) 762-4636 (800-PMA-INFO). Another website that lists programs of...

How to serve more protein

Since many children cannot tolerate eating meat while on chemotherapy, here are some suggestions for increasing protein consumption Add one cup of dried milk powder to a quart of whole milk, then blend and chill. Use this extra-strength milk for drinking and cooking. Use extra-strength milk (above), whole milk, evaporated milk, or cream instead of water to make hot cereal, cocoa, soup, gravy, custards, or puddings. Add powdered milk to casseroles, meat loaf, cream soups, custards, and puddings....

Planning for procedures

Procedures are needed to make diagnoses, check for spread of disease, give treatment, and monitor response to treatment. Interventions range from figuring out the best way for your child to take numerous pills to having multiple spinal taps. Some procedures are pain-free, and the family merely needs clear explanations about what to expect. Other procedures can cause both physical and psychological distress. These reactions can be avoided or minimized by preparation, appropriate medications, and...

Values for healthy children

Each laboratory and lab handbook has slightly different reference values for each blood cell, so your lab sheets may differ slightly from those that appear later in this appendix. (See Figure B-1.) There is also variation in values for children of different ages. For instance, in children from newborn to 4 years old, granulocytes are lower and lymphocytes higher than the numbers listed below. Geographic location affects reference ranges as well. The following table lists blood count values for...

When to tell your child

You should tell your child as soon as possible after diagnosis. It is impossible to prevent a child from knowing that he is seriously ill. The child has been whisked to an unfamiliar hospital by frightened parents, endured painful tests, and received drugs and transfusions. Cards and presents begin to arrive, and friends and siblings are absent or behave in a strange manner. The child may meet other children with a variety of physical problems at the hospital. Delay in providing age-appropriate...

Where should your child receive treatment

After a tentative diagnosis of leukemia, most physicians refer the family for further tests and treatment to the closest major medical center with expertise in treating children with cancer. It is very important that the child with leukemia be treated at a facility that uses a team approach, including pediatric oncologists, oncology nurses, specialized surgeons and pathologists, pediatric nurse practitioners, child life specialists, pediatric radiologists, rehabilitation specialists, education...

Last day of treatment

Although individual cases vary, generally on the last day of treatment a child in remission from leukemia has a diagnostic spinal tap, a bone marrow aspiration, a complete blood count and chemistry screen, a thorough physical exam, and a discussion with the oncologist. The oncologist should review the treatment, outline the schedule for blood tests and exams for the future, and sensitively inform the family of the potential for long-term side effects. After the procedures, the family will...

Avoiding communicable diseases

The dangers of communicable diseases to immunosuppressed children are discussed in Chapter 11, Common Side Effects of Chemotherapy. To prevent exposure, parents need to work closely with the school to develop a chicken pox, shingles, and measles outbreak plan if the school does not already have a disease notification plan in place. Parents need to be notified immediately if their child has been exposed to chicken pox, so that the child can receive the varicella zoster immune globulin (VZIG)...

Reading

Bearison, David J. 'They Never Want to Tell You' Children Talk About Cancer. Cambridge, Massachusetts Harvard University Press, 1991. Several children and teenagers living with cancer candidly discuss their feelings. Written by a developmental psychologist. Bombeck, Erma. I Want to Grow Hair, I Want to Grow Up, I Want to Go to Boise. New York Harper & Row Publishers, 1989. Funny, touching book about children surviving cancer. This book is out of print, but may be in your local library....

The immediate future

It is important for you to know that you are not alone. Many have traveled this path before you. Although it is sad to know that others are forced into this terrifying journey, you can take some small solace from knowing that you are not the only parents to experience these feelings. You can call upon other parents as resources and fountains of support. The next several chapters will provide information to help you deal with immediate decisions that must be made in the first week of treatment...

Taking pills

Over the course of your child's treatment, it will be necessary to administer pills and or liquid medications on a regular basis. When giving oral medications, it is essential to get off to a good start and establish cooperation early. To teach Brent (6 years old) to swallow pills, when we were eating corn for dinner I encouraged him to swallow one kernel whole. Luckily, it went right down and he got over his fear of pills. I wanted Katy (3 years old) to feel like we were a team right from the...

Sadness and grief

Parents feel an acute sense of loss when their child is diagnosed with leukemia. They feel unprepared to cope with the possibility of death, and fear that they may simply not be able to deal with the enormity of the problems facing the family. Parents describe feeling engulfed by sadness. Grieving for the child is common, even when the prognosis is good. Parents grieve the loss of normalcy, the realization that life will never be the same. They grieve the loss of their dreams and aspirations...

Your childs pattern

Each child develops a unique pattern of blood counts during treatment, and observant parents can help track these changes. This appendix contains a record-keeping sheet that you can use to record your childs blood values (see Figure B-2). If there is a change in the pattern, show it to your childs doctor and ask for an explanation. Doctors consider all of the laboratory results to decide how to proceed, but they should be willing to explain their plan of action to you, so that you better...

Venoocclusive disease

Veno-occlusive disease (VOD) is a complication in which the flow of blood through the liver becomes obstructed. Children who have had more than one transplant, previous liver problems, or past exposure to intensive chemotherapy are more at risk to develop VOD. It can occur gradually or very quickly. Symptoms of VOD include jaundice (yellowing of the skin), enlarged liver, pain in the upper right abdomen, fluid in the abdomen, unexplained weight gain, and poor response to platelet transfusions....

Teens

The C-Word Teenagers and Their Families Living with Cancer New Sage Press, 1998. Contains photos and the stories of five teenagers with cancer. Gravelle, Karen, and John A. Bertram. Teenagers Face to Face with Cancer. New York Julian Messner, 1986. Seventeen teenagers talk openly about their cancer, including diagnosis, dealing with doctors, chemotherapy, relationships with others, planning for the future, and relapse. A heartfelt, honest, yet comforting book. Out of print, but...

Emotional responses

Stem cell transplant can take a heavy emotional toll on the child, the parents, and the siblings. It can be a physically and mentally grueling procedure, with the possibility of months or years of after effects. Most transplant team members are trained extensively to meet the needs of the child and family during the transplant and long convalescence. The team includes physicians and nurses, psychiatrists, social workers, chaplains, educators, nutritionists, and child life therapists. Christie...

Online

Detailed descriptions of types of cancers, treatment, and clinical trials. CANSearch A guide to cancer resources on the Internet, produced by the National Coalition for Cancer Survivorship. The best adult child leukemia information on the Internet. Includes leukemia-specific information, leukemia organizations, and links to useful resources such as CancerNet, PDQ, abstracts, cancer literature, Internet support groups, bone marrow transplant sites, and cord blood transplant sites. Edited by...

Emotional support

When Life Becomes Precious A Guide for Loved Ones and Friends of Cancer Patients. New York Bantam Books, 1997. Written by a counselor with over two decades of experience helping cancer patients, this book is full of practical advice for caregivers of cancer patients. It explains with great warmth how to be supportive, handle special occasions, explain cancer to children, and take care of yourself. Leukemia and Lymphoma Society. Emotional Aspects of Childhood Leukemia. To...

Platelet transfusions

Platelets are an important component of the blood. They help form clots and stop bleeding by repairing breaks in the walls of blood vessels. A normal platelet count for a healthy child is 150,000 mm3 to 420,000 mm3. Chemotherapy can severely depress the platelet count for some children. If a transfusion is not given when counts are very low, uncontrollable bleeding can result. Many centers require a transfusion when the child's platelet count goes below 10,000 to 20,000 mm3, and sometimes...

Deductible medical expenses

It is estimated that families of children with cancer spend 25 percent or more of their income on items not covered by insurance. Examples of these expenses are gas, car repairs, motels, food away from home, health insurance deductibles, prescriptions, and dental work. Many of these items can be deducted on federal income tax. Often parents are too fatigued to go through stacks of bills at the end of the year to calculate their deductions. If a monthly total is kept in a notebook, then all that...

For brothers and sisters

Ellen Zimmerman discusses the impact that her cancer had on her siblings. (Reprinted with permission from Candlelighters Youth Newsletter, Summer 1994, Vol. I am the first of four children and the only girl. When I was diagnosed with ALL at the age of 14, it affected all our lives. My brother Wes was 13, Matthew was 4, and Erik was 2. They and my parents were my support system. When I was first diagnosed and in the hospital, Dr. Plunkett asked if I wanted anyone besides my parents present when...

Camps

Summer camps for children with cancer, and often their siblings as well, are becoming increasingly popular. These camps provide an opportunity for children with cancer and their siblings to have fun, meet friends, and talk with others in the same situation. Counselors are usually cancer survivors and siblings of children with cancer, or sometimes oncology nurses and residents. Supervised by experts, children can have their concerns addressed without involving their parents. These camps provide...

Loss of control

Parents sometimes feel overwhelmed by the sudden loss of control after their child is diagnosed with a tumor. This is especially true for parents who are used to having a measure of power and authority in the workplace or the home. My husband had a difficult time after our son was diagnosed. We have a traditional marriage, and he was used to his role as provider and protector for the family. It was hard for him to deal with the fact that he couldn't fix everything. Parents can regain some...

How to make food more appealing

Many children are finicky eaters at the best of times. Cancer and its treatment can make eating especially difficult. Here are some general suggestions to make eating more enjoyable for your child Give small portions throughout the day rather than three large meals. Feed your child whenever she is hungry. Remember that your child knows best which foods he can tolerate. In the beginning of treatment, we decided that my son had to eat what the rest of the family was having. If he didn't eat that,...

Fear

It is very common for young siblings of children with cancer to think that the disease is contagious, that they can catch it. Many also worry that one or both parents may get cancer. The diagnosis of cancer changes all of the children's view that the world is a safe place. They feel vulnerable, and they are afraid. Depending on their age, siblings worry that their brother or sister may get sicker or may die. Some siblings develop symptoms of illness in an attempt to regain attention from the...

From a sibling

Fifteen-year-old Sara McDonnall won first prize in the 1995 Candlelighters Creative Arts Contest with her essay, From a Sibling. Childhood cancer a topic most teens don't think much about. I know I didn't until it invaded our home. Childhood cancer totally disrupts lives, not only of the patient, but also of those closest to him her, including the siblings. First, I was numbed with unbelieving shock. This can't be happening to me and my family. Along with this came a whole dictionary full of...

Followup care

In the past, most survivors of leukemia were on their own after treatment ended. With more long-term survivors, it became apparent that these young men and women often faced complex medical and psychosocial effects from their years of treatment. As a result, many institutions began late effects clinics to provide a multidisciplinary team to monitor and support survivors. The nucleus of the team is usually a nurse coordinator, pediatric oncologist, pediatric nurse practitioner, radiation...

Catheter removal

Children usually cannot wait for the catheter to be removed, as it symbolizes that treatment has truly ended. Physicians differ a great deal on when is the best time to remove the catheter. Some recommend removal when the child starts maintenance. Others remove it when the child is sedated for the last bone marrow aspiration, while some doctors advise waiting several weeks or months after treatment ends. Ask the doctor for her reasons for her recommendation, and discuss it fully if you or your...

Urine specimens

Chemotherapy requires frequent urine specimens. One way to help obtain a sample is to encourage lots of drinking the hour before or ask the nurse to increase the drip rate on the IV Explain to the child why the test is necessary. Ask the nurse to show how the dip sticks work. (They change color, so they are quite popular with the preschoolers.) Use a hat under the toilet seat. This is a shallow plastic bucket that fits under the seat and catches the urine. Turn on the water while the child sits...

Marriage

Cancer treatment places enormous pressure on a marriage. Couples may be separated for long periods of time, emotions are high, and coping styles and skills differ. Initially, family life may be shattered. Couples must simply survive the first few overwhelming weeks, then work together to rearrange the pieces in a new pattern. Here are parents' suggestions and stories about how they managed My husband and I shared decision-making by keeping a joint medical journal. The days that my husband...

Insurance help

777 East Girard Avenue, Suite 250 Englewood, CO 80110 (877) 435-7123 (877-HELP-123) (303) 744-7667 http www.patientadvocacy.net Helps resolve insurance reimbursement problems. 753 Thimble Shoals Boulevard, Suite B Newport News, VA 23606 (800) 532-5274 or (757) 873-6668 http www.patientadvocate.org Provides publications, help with insurance problems, and referrals to attorneys. The National Association of Insurance Commissioners (NAIC) 2301 McGee Street, Suite 800 Kansas City, MO 64108-2604...

Online support

ACOR, The Association of Cancer Online Resources, Inc. ACOR offers access to 131 mailing lists that provide support, information, and community to everyone affected by cancer and related disorders. It hosts several pediatric cancer discussion groups, including PED-ONC (a general pediatric cancer discussion group), ALL-KIDS (childhood acute lymphoblastic leukemia), and PED-ONC SURVIVORS (for parents of survivors). A resource devoted to parents and children with cancer to facilitate networking....

Journal

Keeping a notebook works extremely well for people who like to write. Parents make entries every day about all pertinent medical information and often include personal information such as their own feelings or memorable things that their child has said. Journals are easy to carry back and forth to the clinic, and journal entries can be written while waiting for appointments. They have the advantage of having unlimited space. One disadvantage is that they can be misplaced. In You Don't Have To...

Siblings need help too

The diagnosis of cancer catastrophically affects all members of the family. Siblings can be overlooked in the early months when the parents are spending most of their time caring for the ill child at the hospital, clinic, or in the home. Many siblings keep their feelings bottled up inside to prevent placing additional burdens on their distraught parents. Often, the place where siblings act out the most is at school. It is common for siblings to withdraw or become disruptive in the classroom,...

Blood count charts

Many hospitals supply folders containing photocopied sheets for record-keeping. Typically, they have spaces for the date, white blood cell count, absolute neutrophil count, hematocrit, platelets, chemotherapy given, and side effects. My record-keeping system was given to me by the hospital on the first day. We were given a notebook with information about the illness and treatment. Also included were charts that we could use to keep all the information about the child's blood work, progress,...

Pneumonia

Pneumonia is inflammation of the lungs caused primarily by bacteria, viruses, or other organisms. The symptoms of pneumonia are rapid breathing, chills, fever, chest pain, cough, and bloody sputum. Children with low blood counts can rapidly develop a fatal infection and must be treated quickly and aggressively. Most cancer centers recommend an annual influenza shot to help prevent this cause of pneumonia. My son received his high-dose methotrexate and vincristine injection just days before he...

Parents

A comprehensive package of materials developed to assist children and adolescents re-entering the school setting. The kit contains a Teachers Guide for Kids with Cancer and two award-winning documentary videos Emilys Story Back to School After Cancer and Making the Grade Back to School After Cancer for Teens. http www.cancervive.org materials.html. Item No. 123. ( 79.95) Coping with Childhood Cancer. 28 minutes. Five family portraits covering issues such as guilt,...

Response to treatment

How quickly the leukemia cells disappear after treatment starts is also a factor in the child's prognosis. Some institutions test the bone marrow on the seventh and the fourteenth days of treatment. If a rapid reduction of blasts in the marrow has occurred within the first two weeks of treatment, then the child is considered an early rapid responder and may be placed onto a less intensive protocol (treatment plan). Other centers use response to a one-week trial of prednisone to separate...

Keeping the school informed about treatment

Communicating with the school often does not enter a parents mind during the nightmarish days after diagnosis. Keeping the school informed, however, lays the foundation for the months or years of collaboration as the child goes through the rigors of treatment for cancer. Parents need to forge a strong alliance with the school professionals to ensure that their child, who may be emotionally and or physically fragile, continues to be welcomed and nurtured at school. As soon as your child is...

Insurance

Job discrimination can spell economic catastrophe for cancer survivors because most health insurance is obtained from employment. As survivors mature, seek employment, and move away from home, many encounter barriers to obtaining health insurance, such as rejection of application based on cancer history, policy reductions, policy cancellation, preexisting condition exclusions, increased premiums, or extended waiting periods. As current discussions about national healthcare reform are extremely...

When are transplants necessary

In some children, leukemia cannot be cured with conventional doses of chemotherapy and or radiation. These cancers may be sensitive to extremely high doses of chemotherapy, but these doses would permanently damage normal bone marrow. A stem cell transplant allows the delivery of high-dose, potentially curable therapy follwed by an infusion of normal stem cells to rescue bone marrow function. Stem cell transplants are sometimes recommended for children with CML in the chronic phase, JMML after...

Siblings Having our say

Naomi Chesler gives advice to parents and siblings of those with childhood cancer. Twelve young people aged 7 to 29 met at the 25th Anniversary Candlelighters Conference to talk about what it is like having a sibling with cancer in the family. We talked about our families, our anger, jealousy, worries, and fears, and thought about what we wanted to tell others about our experiences. In fact, we made lists of things we wanted other people to know one for parents, one for other children or young...

Guilt

Young children are egocentric they feel that the world revolves around them. It is logical to them to feel that since their sister has cancer, they caused it. They may have said in anger, I hope you get sick and die, and then their sister got sick. This notion should be dispelled right after diagnosis. Children really need to be told, many times, that cancer just happens, and no one in the family caused it. They need to understand that just because you think something or say something, it...

Relapse

Coping with Childhood Cancer Where Do We Go From Here revised ed. Toronto Kinbridge Publications, 1993. Contains an excellent chapter on relapse, which covers such topics as the impact of relapse, how relapse strikes, feelings, pain, siblings, adjustment to living, the adolescent patient, and some thoughts for single parents. This book is out of print, but may be available in your local library or from Canadian Candlelighters. National Cancer Institute. When...

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...

Abandonment

If parental attention revolves around the sick child, siblings may feel isolated and resentful. Even when parents make a conscious effort not to be so preoccupied with the ill child, siblings sometimes still perceive that they are not getting their fair share of attention and may feel rejected. One day when my 4-year-old son was in day care, we unexpectedly had to bring Erica in for emergency surgery on a septic hip. (It turned out to be a life-threatening surgery, and she ended up staying in...

Acknowledgments

This book is truly a collaborative effort without the help of many, it would simply not exist. My heartfelt thanks to my family and friends who supported and encouraged me while I wrote all three editions of this book. I would especially like to thank my children Kathryn and Alison for the joy they bring to my life each day and their patience when I work long hours in my home office. Special thanks to my editor, Linda Lamb, whose creative instinct and gentle guidance shaped this book from its...

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...

Allogeneic

Allogeneic transplants are those in which the stem cells come from another person who is not the child's identical twin. This would include a sibling, parent, close relative, or an unrelated individual. Sometimes a matched unrelated donor (called MUD) can be located through the US National Marrow Donor Program or similar donor registries in the US or other countries. The risk of complications increases if the donor is mismatched or unrelated. Adele's transplant was June 16, 1997. She was 51 2...

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...

And Behavior

When I approach a child, he inspires in me two sentiments tenderness for what he is, and respect for what he may under the best of circumstances, child rearing is a daunting task. When parenting is complicated by an overwhelming crisis such as leukemia, communication within the family may suffer. Prior to the diagnosis, children know the family rules and understand the limits for their behavior. Afterward, normal family life is disrupted, and all sorts of confusing and distressing feelings may...

Anger

Anger is a common response to the diagnosis of life-threatening illness. It is nobody's fault that children are stricken with cancer. Since parents cannot direct their anger at the cancer, they target doctors, nurses, spouses, siblings, and sometimes even the ill child. Because anger directed at other people can be very destructive, it is necessary to devise ways to express the anger. We were sent to the emergency room after my son's diagnosis with leukemia. After the inevitable delays, an IV...

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...