Resources for Pediatric Oncology Patients and Their Families

There are many resources and support programs available to help you and your family manage cancer diagnosis and treatment. Here are some we’ve found to be especially useful.

Please contact your hospital or outpatient social worker for information and eligibility requirements for these and other resources to meet your particular needs.

Medical

Books and CDs

On Loan:

  • American Childhood Cancer Organization: Provides free books on request, including these:
    • Chemo, Craziness & Comfort, My Book about Childhood Cancer: Practical advice for children 6-12, easy-to-read text.
    • Childhood Brain and Spinal Cord Tumors: A Guide for Families, Friends & Caregivers.
    • Childhood Cancer: A Parent’s Guide to Solid Tumor Cancers.
    • Childhood Cancer Survivors: A Practical Guide to Your Future.
    • Childhood Leukemia: A Guide for Families, Friends, and Caregivers.
    • Educating the Child with Cancer.
    • Oliver’s Story: For Sibs of Kids With Cancer: For siblings aged 3-8, answers questions and offers constructive ways on how siblings can offer support.
    • The Amazing Hannah: (also in Spanish), picture book for pre-schoolers, ages 1-5, showing real-life treatment situations.
  • Children’s Brain Tumor Foundation: Provides information, support, and free books, including A Resource Guide for Parents of Children with Brain or Spinal Cord Tumors.
  • Starbright World: Offers books, videos, and games for children and teens coping with cancer, chemotherapy, and returning to school.

For Children:

  • Children and Parents: You and Leukemia: A Day at a Time, by Lynn S. Baker, M.D.
  • Drums, Girls, and Dangerous Pie, by Jordan Sonnenblick.
  • Kathy’s Hats: A Story of Hope, by Trudy Krisher.
  • The Problem with Hair: A Story for Children Who Are Learning About Cancer, by Karen Foss.
  • What About Me?: When Brothers and Sisters Get Sick, by Allan Peterkin.

For Teenagers:

  • The C-Word: Teenagers and Their Families Living with Cancer, by Elena Dorfman

For Parents:

  • Shelter from the Storm: Caring for a Child with a Life-Threatening Condition, by Hilden, M.D., and Daniel Tobin, M.D., with Karen Lindsey.

For When a Family Member Has Cancer:

  • Cancer in the Family. Helping Children Cope with a Parents’ Illness, by S. Heiney, J. Hermann, K. Bruss, and J. Fincannon, J.
  • Helping Your Children Cope with Your Cancer. A Guide for Parents and Families, by P. Van Dernoot.
  • How to Help Children Through a Parent’s Serious Illness, by K. McCue.
  • When a Parent Has Cancer. A Guide to Caring for Your Children, by W. Schlessel Harpham.

Diagnosis and Treatment

Emotional

Camps and Retreats/Special Events

  • Believe in Tomorrow Children’s Foundation: Sponsors local free beach and mountain retreats and special adventures for the whole family.
  • Camp Friendship: Sponsored by the Carol Jean Cancer Foundation, located in Maryland, it offers several-week long camping sessions per year plus other programs for siblings, teens, and parents.
  • Camp Mak-A-Dream: Free camps for kids, teens, and young adults with cancer in Montana.
  • Camp Sunshine: Free year-round camp programs for multiple diagnoses for the whole family in Casco, Maine.
  • Children’s Oncology Camping Association International (C.O.C.A.): Provides information on pediatric oncology camps throughout the country.
  • Growing Hope Kids: Local foundation that sponsors annual Spring Peds Oncology Picnic, trips to the circus (March and October), King’s Dominion (Sept.), annual Holiday Party, and Life with Cancer’s “I’m Cured…Now What?” Survivorship conference with ten $1,000 college scholarships.
  • Special Love: Sponsors summer camp for patients ages 7-17, Brass Camp for brothers and sisters; Fantastic Friends camp; weekend getaways for parents and the whole family; teen, ski, and young adult weekends; and numerous other activities throughout the calendar year at the 4-H facility in Front Royal, Virginia.

Communication

Special Wishes

Groups and Programs

  • Candlelighters of the DC Metro Area: Offers financial assistance (up to $500), gift bags for newly diagnosed families, monthly support programs and books and resources. With Life with Cancer, co-sponsors the annual holiday party, Halloween party, family bingo, Mother/Daughter Spa and Father/Son Nights.
  • Casey Cares Foundation: Provides tickets to local excursions and events, birthday celebrations, etc.
  • Patti Robinson Kaufmann First Connection Program: Matches children/parents and trained volunteers who have been touched by blood cancers for support.
  • Songs of Love Foundation: Provides personalized songs on child’s own CD written and performed by talented artists with input from the child’s life. Spanish available.
  • Stillbrave: Provides emotional, financial, and practical assistance to children and families with cancer.

Wigs and Hats

  • Caps for Kids: Provides a cap autographed by the athlete, entertainer, or other notable celebrity of their choice.
  • Ellie’s Hats: Started by teacher of a local child with leukemia; provides free hats year round to kids with cancer.
  • Girl on the Go: Provides private in-home wig consultations for girls and women going through cancer treatment.
  • Hair Club for Kids: Provides free hair restoration for children battling hair loss as a result of illness.
  • Headcovers Unlimited: Provides hats, turbans, and wigs for hair loss and cancer patients.
  • Hip Hats: Partial, breathable wigs made of real hair that can be worn with caps matched to girl’s hair color, length, and texture. Financial assistance available to help with purchase.
  • Locks of Love: Provides hairpieces to children younger than 18. Accepts hair donations.
  • Pink Heart Funds: Provides free wigs to children with physician referral. Shop online. Contact social worker for details.
  • Wigs for Kids: A nonprofit organization that provides wigs and accepts hair donations.

Lifestyle

Employment/Insurance Help and Advocacy

  • COBRA: Federal act that allows continued health insurance coverage due to loss of job, job relocation or reduced work hours on a temporary basis (18 months) at the employee’s expense. Contact Employee Benefits Security Administration (EBSA) Hotline @ 1-866-444-EBSA or website with questions.
  • Family Medical Leave Act (FMLA): Provides up to 12 work weeks of unpaid leave to care for family member with a serious illness without threat of loss of employment. Contact employer or U.S. Department of Labor.
  • Health Insurance / Affordable Care Act (ACA): Affordable health care options including subsidized insurance in some cases for children and families; protections against pre-existing conditions.
  • Health Insurance Portability and Accountability Act (HIPAA): Federal act designed to protect access to health insurance when starting a new job or changing jobs, or when buying individual coverage if you lose coverage under an employer group plan. Contact State Insurance Commissioner or Centers for Medicare & Medicaid Services.
  • Legal Help Pro Bono (free): For those diagnosed with leukemia, lymphoma, and other blood disorders through the Leukemia & Lymphoma Society, National Capital Area; 703-960-1100, X231.
  • Patient Advocate Foundation: Provides assistance with insurance problems and works to resolve coverage and benefit issues.

Financial Resources

  • College Scholarships for Cancer Survivors: See comprehensive lists on CureSearch.
  • Elderly or Disabled with Consumer Direction (EDCD) Waiver: Provides respite and nursing care for children (and adults) with medical conditions or disabilities to prevent institutionalization. The waiver takes into account the child’s income and assets, not the parents’, in consideration for Medicaid as secondary insurance. Must use respite care to qualify for Medicaid benefit. Respite can be provided by a family member or agency personnel. Contact social worker or Virginia Department of Medical Assistance Services for more information.
  • Leukemia & Lymphoma Society: Provides $150 per year for out-of-pocket chemotherapy, drug, and mileage expenses; offers co-pay assistance for some diagnoses.
  • Local, Regional, and National Charities: The groups below provide emergency assistance with various household and non-medical expenses. Maximum grant requests range from $500 to $700. Contact a social worker for more details.
  • National Children’s Cancer Society: Provides financial help to eligible families with transportation reimbursement and expenses for lodging at treatment centers away from home, some costs of bone marrow searches for transplant, and other categories of assistance. Requires Social Work referral, application, liquid assets less than $5,000, and copies of bank statements.
  • National Foundation for Credit Counseling: Local financial care centers, free or low cost. Also see Supplemental Security Income (SSI): Under Social Security for children who meet disability and family income criteria. Provides a monthly benefit and automatic link to Medicaid. For more, contact Social Security Administration website or hotline 1-800-772-1213.
  • The Joe Cassella Foundation: Helps with pediatric medical bills when there is no or limited insurance coverage and financial need.

School Issues

  • Child Find and Early Intervention Programs: Outpatient and home-based developmental evaluations and therapies (physical, occupational, speech, cognitive) for infants through pre-schoolers with disabilities or suspected delays. Contact social worker for appropriate referral.
  • Homebound Instruction: Schools are mandated to provide teachers for homebound instruction, grades 1-12 in core subjects. Requires medical documentation and the commitment of a parent to be present during scheduled teacher visits. Many teachers will make hospital visits as well. Social worker or Inova Child Life Services will make referral.
  • Home Schooling: An option for parents who wish to provide the instruction themselves. Contact National Home Education Network for information, group listings, and newsletter.
  • Individualized Educational Plan (IEP)/504 Plans: Many children treated for cancer will need evaluations for special education and/or accommodations during or following treatment due to physical and/or learning difficulties.
  • School Re-Entry: Excellent web resources for information on late effects, school re-entry, and advocacy include the following:

Transportation To and From Treatment/Other Treatment Centers

  • Angel Flight Mid-Atlantic: Free air travel on private planes to treatment centers anywhere in the U.S., using pilots who donate their services. Patients must not be in need of medical support in-flight.
  • Corporate Angels: Provides free air travel to treatment centers using empty seats on corporate jets. Open to all cancer patients and bone marrow donors who are ambulatory and not in need of medical support while traveling.
  • LogistiCare: Rides to doctors, clinic/hospital appointments for Medicaid eligible children, 1-866-386-8331.
  • National Patient Travel Center: Arranges air medical transportation to any specialized treatment center for diagnosis and treatment, regardless of financial need.

Websites

Free personalized websites to share news with family and friends:

If you are affected by cancer, we invite you to connect with us—whether you're a patient, family member, or friend.
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