If you, or someone you love, has a child with a serious illness, you may not know what to do. Here are some tips for coping with a chronically ill child.
Pediatric (childhood) cancers encompass any malignant neoplasms in the pediatric population characterized by the proliferation of abnormal cells that have the ability to invade the surrounding tissues and metastasize to new sites.
Learn more about cancer types and terminology.
Continued, unexplained weight loss
Headaches, often with early morning vomiting
Increased swelling or persistent pain in bones, joints, back, or legs
Lump or mass, especially in the abdomen, neck, chest, pelvis, or armpits
Development of excessive bruising, bleeding, or rash
A whitish color behind the pupil
Nausea which persists or vomiting without nausea
Constant tiredness or noticeable paleness
Eye or vision changes which occur suddenly and persist
Recurrent or persistent fevers of unknown origin
Causes of Pediatric Cancers:
There is little known about what causes each type of childhood cancer. Research hasn't explained why certain children do not develop cancer whereas others do.
What We DO Know About Childhood Cancers:
Chromosome disorders account for most leukemia occurrences. Higher levels of radiation have been linked to several pediatric cancers. Children with Down Syndrome are at higher risk to develop cancers.
Understanding Childhood Cancer Statistics:.
Statistics - all statistics - describe a group, not an individual's prognosis. Learning the survival rates for each cancer does not forecast a particular prognosis.
There are many factors that influence a progress of a single child, including, age and type of cancer (or other disease) as well as biological and risk factors specific to the child's cancer.
Survival charts are simply that. They're mostly composed of reports and instances prior to 1995. Pediatric cancer research grows by leaps and bounds every single year and it will take years before enough time has passed that we can see survival rates from today's treatments.
Types of Childhood Cancers:
Leukemia - the most common childhood cancer. Leukemia is cancer of the bone marrow and the tissues that create circulating blood cells. Abnormal white blood cells (normally responsible for controlling infection) circulate into the blood stream, crowding out the infection-fighting normal white blood cells as well as the normal red blood cells.
- ALL (Acute Lymphoblastic Leukemia): the most common form of childhood cancer, affecting seventy-five percent of children with cancer. ALL is a cancer of the lymphoid cells in the bone marrow and lymphoid organs of the body - both of which are involved in the body's immune system.
- AML (Acute Myelogenous Leukemia, Acute Myeloid Leukemia or Acute Nonlymphatic Leukemia), is a cancer of the myeloid blood cells produced in the bone marrow that help fight infections.
Sarcomas - cancerous tumors of the soft tissues and bones.
1) Bone Cancers - cancer that forms in the bones.
- Osteosarcoma - the most common type of bone sarcoma, usually located on the ends of the long bones of the arms and legs, typically close to the joints. Osteosarcomas do not respond to radiotherapy.
- Ewings Sarcoma - another type of bone cancer that appears in the middle of bones. These sarcomas are found generally in the thighs, hipbones, and ribs. It is distinguished from osteosarcoma due to its responsiveness to radiotherapy.
2) Soft Tissue Sarcomas: cancer that begins in the muscle, fat, blood vessels, fibrous tissue or other supporting tissues of the body.
- Rhabdomyoscarcoma - fast growing, highly malignant, soft tissue tumor found in the muscles. Rhabdomyosarcomas often cause a noticeable lump in head, neck, kidneys, bladder, arms and legs.
Central Nervous System Cancers:
- Brain Tumors - many types of childhood brain tumors exist. Most pediatric brain tumors are named for the type of cell they originated from and include: medulloblastoma, ependymoma, astrocytoma, brain stem and optical nerve gliomas, and gangliogliomas.
- Neuroblastoma - a solid, malignant tumor of the sympathetic nervous system that typically originates in the adrenal glands. A neuroblastoma manifests as a lump in the abdomen, around the spinal cord in the neck, chest, or pelvis.
Lymphomas - tumors of the lymphatic tissues.
- Hodgkin Disease (or Hodgkin's Lymphoma) - lymphoma that affects lymph nodes nearer to the body surface. Typically found in neck, armpit and groin area.
- Non-Hodgkin Lymphoma - lymphoma that affects lymph nodes deeper inside the body. Typically includes lymphoblastic lymphoma, Burkitt's Lymphoma and Non-Burkitt's Lymphoma.
Cancers of the Kidney:
- Wilms Tumor (nephroblastoma) - it can occur in one or (typically) both kidneys and is believed to develop from immature kidney cells.
- Clear Cell Sarcoma Of The Kidney - a rare type of kidney cancer named because the insides of the cancer cells appear clear under a microscope.
Liver Cancers - tumor that forms in the tissues of the liver.
- Hepatocellular Carcinoma - an adenocarcinoma and the most common type of liver tumor
- Hepatoblastoma - liver tumor that occurs in infants and children
Other Pediatric Cancers:
- Retinoblastoma - malignant tumor of the retina of the eye. This tumor may be hereditary (40%) or sporadic and can be unilateral or bilateral (one of both eyes affected).
- Germ Cell Tumors - these tumors begin in the cells that give rise to sperm and eggs. These tumors may form in the ovaries, the testes, or they may migrate to the base of the spine, or in the middle of the brain, chest or abdomen.
Treatment for Pediatric Cancers:
Treatment for childhood cancers may include a combination of chemotherapy, radiation, and/or surgery. The treatment strategy depends entirely upon the type of cancer and, to some extent, the abilities of the treatment center.
For common cancers, parents are offered a standard treatment plan (Phase III Clinical Trials).
More rare and relapsed cancers may not have a standard treatment plan developed, therefore parents may find that their child's cancer may be treated differently at different institutions.
Research has shown that children and adolescents treated at specialized children's cancer centers have a better outcome. Children's Oncology Group Treatment Centers listed state by state.
Another list of pediatric oncology treatment centers may be found here.
Where To Find Clinical Trials:
Clinical Trials.Gov - registry and results database of federally and privately supported clinical trials conducted in the US AND around the world.
Trial Check - cancer clinical trial search engine by the Coalition of Cancer Cooperative Groups.
MD Anderson Cancer Center - trials for most childhood cancers.
National Cancer Institute - Search list of 8,000+ clinical trials now accepting participants.
Coping with Pediatric Cancer:
Childhood cancer diagnoses are difficult for the entire family; however, there are many ways families can improve how they respond to the emotions involved with the child’s diagnosis.
The cancer team can help families understand the normal emotion which arise and teach new skills for relaxation and stress management. Families should communicate feelings in ways which do not upset children.
If families need help, they should reach out to other family members or community members. Their cancer team and social worker also can help find other resources.
Pediatric Cancer Resources:
National Cancer Institute: Information about specific childhood cancers, including clinical trials for children with cancer.
Directory of Local and International Resources for children and families dealing with childhood cancers.
American Childhood Cancer Organization - national organization devoted to improving the lives of children and adolescents with cancer, and their families. The organization publishes and distributes free books about childhood cancer, promotes childhood cancer awareness, advocates for childhood cancers in the political arena, and supports cutting edge research to find new and better treatments for childhood cancers.
Leukemia and Lymphoma Society offers many ways to support individuals and help families cope through support groups and online chats. They have many free programs for patients, families, and care givers.
Shadow Buddies Foundation - create condition-specific dolls designed to be a friend "just like me" for seriously ill or medically challenged children. The Buddies not only provide comfort to the ill child, but also provide physicians a hands-on method of educating newly diagnosed children and their families about a particular disease or medical condition and its treatment.
Coco Foundation - aimed to help fund clinical cancer research and awareness of pediatric cancers and the importance of bone marrow and blood product donation in cancer treatments.
Alex's Lemonade Stand - Nonprofit fighting childhood cancer, one cup at a time.
Beyond The Cure - helps childhood cancer survivors integrate the cancer experience into their lives. This includes educating survivors on the challenges that lie ahead and most importantly, to celebrate survivorship.
American Cancer Society - saves lives and creates a world with less cancer and more birthdays by helping people stay well, helping people get well, by finding cures, and by fighting back. Tons of good links to types of cancer, how to prevent cancer and different types of cancer. ACS offers financial assistance regardless of income.
Bear Necessities – A non-profit pediatric cancer foundation on a mission to fight cancer and provide hope and support to families.
Monkey In My Chair is a beneficial program to help child cancer patients stay connected to their classmates and education.
Starlight Children's Foundation is a great online resource including videos for kids on coping with chemotherapy.
Meal Train is an interactive online meal planner for families dealing with major life events. A schedule is created to help friends and family know when they can bring a meal by.