Childhood Cancer Resources

Government Assistance

There are a number of federal and state programs that provide financial benefits to individuals and families. These benefits, known as entitlements, are primarily set up for low-income households, the elderly, and the disabled. Each entitlement has eligibility requirements. There are also programs administered through state governments that can help with health care related needs. Government assistance programs include:

U.S. Department of Health & Human Services
Information on public assistance and food stamps
Check phonebook for your local office
www.hhs.gov

U.S. Administration on Aging
Benefits for older adults
800-677-1116
www.eldercare.gov
(Eldercare Locator finds resources in your community)

Social Security Administration
800-772-1213
www.ssa.gov

Centers for Medicare & Medicaid Services
800-633-4227
www.cms.gov

Cancer Organizations

CancerCare

800-813-HOPE(4673)
www.cancercare.org

American Cancer Society
800-ACS-2345
www.cancer.org

The Leukemia & Lymphoma Society
800-955-4572
www.lls.org

Lymphoma Research Foundation
800-500-9976
www.lymphoma.org

National Marrow Donor Program
888-999-6743
www.marrow.org

Patient Advocate Foundation’s Colorectal Careline
866-657-8634
www.colorectalcareline.org

Sarcoma Alliance
415-381-7236
www.sarcomaalliance.org

General Organizations

United Way
www.unitedway.org

Community Organizations
Check phonebook under “social service agencies.”

Faith-based Organizations
These include Catholic Charities, Lutheran Social Services, Jewish Family Services, and others. Check phonebook for listings.

More links to Childhood Cancer Resources

Facts About Neuroblastoma

Neuroblastoma is a cancer that develops in the sympathetic nervous system, which is the network of nerves that carries messages from the brain throughout the body. The cancer develops as solid tumors — lumps or masses — in the adrenal glands, abdomen, neck, chest, or pelvis. The tumors can also spread to other parts of the body such as the bones and blood-forming bone marrow. Although research is intensive and ongoing, we still don’t know what causes neuroblastoma. Most doctors and scientists believe it’s an accidental growth that occurs during the development of the sympathetic nervous system.

Symptoms

A person with neuroblastoma may experience one or more of the following symptoms:

  • aches and pains
  • fevers
  • weight loss or poor appetite
  • swelling of the abdomen (referred to as a distended abdomen)
  • limping or difficulty walking
  • Because many of these symptoms are similar to those of other, more common childhood diseases, many children aren’t diagnosed with neuroblastoma until after the cancer has already begun to metastasize (spread) to other parts of the body.
  • Neuroblastoma is a common and often difficult to treat cancer, the most common cancer in infancy.
  • In the United States, about 700 children are diagnosed with neuroblastoma each year.
  • It is the most common tumor found in children younger than 1 year of age.
  • Neuroblastoma is the most common extra cranial solid tumor cancer in children.
  • Every 16 hours a child with neuroblastoma dies.
  • There is no known cure for relapsed neuroblastoma.
  • Nearly 70% of those children first diagnosed with neuroblastoma have disease that has already metastasized or spread to other parts of the body.
  • When disease has spread at diagnosis and a child is over the age of 2, there is less than a 30% chance of survival.

Facts about Pediatric Cancer

The loss of a child to cancer is one of the worst tragedies a family can face. Each death means the loss of an entire lifetime. And survivors face serious medical complications, secondary cancers, cognitive impairments and shortened lifespans.

Facts about Pediatric Cancer Incidence and Mortality

  • Incidence of invasive pediatric cancers is up 29% in the past 20 years.
  • Each year around 13,500 children are diagnosed with cancer in the US, that’s more than a classroom of kids a day.
  • 35,000 children are currently in treatment for cancer.
  • Some 25% of all kids who are diagnosed with cancer die.
  • Some pediatric brain tumors, such as brain stem gliomas and pontine gliomas, are terminal upon diagnosis and no new protocols have been developed in 30 years.
  • Many pediatric cancers, including neuroblastoma and disseminated medulloblastoma, are terminal upon progression or recurrence.
  • More children die of cancer every year than adults died in 9/11.
  • Cancer kills more children than AIDs, asthma, diabetes, cystic fibrosis and congenital anomalies combined.
  • The average age of death for a child with cancer is 8, causing a child to lose 69 years of expected life.
  • The death of a child is one of the most traumatic events a family might face.
  • Families who have lost children are often financially and emotionally depleted.

Facts about Pediatric Cancer Survivors

  • 74% of childhood cancer survivors have chronic illnesses, and some 40% of childhood cancer survivors have severe illnesses or die from such illnesses.
  • Childhood cancer survivors are at significant risk for secondary cancers later in life.
  • Cancer treatments can affect a child’s growth, fertility, and endocrine system. Child survivors may be permanently immunologically suppressed.
  • Radiation to a child’s brain can significantly damage cognitive function, or if radiation is given at a very young age, limiting the ability to read, do basic math, tell time or even talk.
  • Physical and neurocognitive disabilities resulting from treatment may prevent childhood cancer survivors from fully participating in school, social activities and eventually work, which can cause depression and feelings of isolation.
  • Childhood cancer survivors have difficulty getting married and obtaining jobs, health and life insurance.

“Social Outcomes in the Childhood Cancer Survivor Study Cohort”, Journal of Clinical Oncology, February 17, 2009.

National Action Plan for Childhood Cancer, Report on the National Summit Meetings on Childhood Cancer. American Cancer Society, http://www.cancer.org/downloads/PRO/childhood_cancer_action_plan.pdf

  • Childhood cancer is the number one disease killer in children.
  • There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS. Yet, the U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.
  • Cancer kills more children than any other disease, more than Asthma, Cystic Fibrosis, Diabetes and Pediatric AIDS combined.
  • Sadly, over 2,300 children with cancer die each year.
  • Every school day 46 children are diagnosed.
  • 1 in 330 children will have the disease by age 20.
  • Cancers in very young children are highly aggressive and behave unlike malignant diseases at other times in life.
  • 80% of children have metastasized cancer at the time of their diagnosis. At diagnosis, only 20% of adults with cancer show evidence that the disease has spread or metastasized.
  • Detecting childhood cancers at an early stage, when the disease would react more favorably to treatment, is extremely difficult.
  • Cancer symptoms in children include fever, swollen glands, anemia, bruises and infection are often suspected to be, and at the early stages are treated as, other childhood illnesses.
  • Even with insurance coverage, a family will have out-of pocket expenses of about $40,000 per year, not including travel.
  • Treatment can continue for several years, depending on the type of cancer and the type of therapy given.

Causes of Childhood Cancer

  • Every family is potentially at risk.
  • In almost all cases, childhood cancers arise from non-inherited mutations (or changes) in the genes of growing cells.
  • As these errors occur randomly and unpredictably, there is currently no effective way to predict or prevent them.

Cancer Research Funding

  • Nationally, childhood cancer is 20x more prevalent than pediatric AIDS.
  • Pediatric AIDS receives 4x the funding that childhood cancer receives.
  • In one month there are 2x as many deaths from childhood cancer as pediatric AIDS for the entire year.
  • Only 3% of the National Cancer Institute Budget goes toward pediatric cancer research.
  • September is Pediatric Cancer Awareness Month, which nationally goes unrecognized.
  • Currently there are between 30,000 ? 40,000 children undergoing cancer treatment in the U.S.
  • Young patients often have a more advanced stage of cancer when first diagnosed. Approximately 20% of adults with cancer show evidence of metastasis at diagnosis, yet almost 80% of children have metastases at diagnosis.
  • Today, up to 75% of the children with cancer can be cured, yet some forms of childhood cancer have proven so resistant to treatment that, in spite of research, a cure is illusive.
  • There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS. Yet, the U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.
  • The National Cancer Institute’s (NCI) federal budget for 2003 was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.