Cancer Patient and Family Resources
Childhood cancer is a rare disease.
Every year one child in 8,000 under age 17 will develop cancer. The annual incidence in children age 0 to 17 is 129 per million. There are about 130 new cases diagnosed in children under age 17 each year in BC.
Treatment information
Childhood cancers differ from adult cancers in how they present, and in their cell type and rate of growth.
Typically, childhood cancers respond well to treatment. Children with cancer have a better chance today of living a longer life than ever before. There has been a steady decline in the mortality rate for children with cancer over the last 20 years.
The likelihood of cure depends on the type of cancer and the extent of the disease. Cure rates continue to improve as we gather new knowledge through basic research and apply it in clinical trials.
Caring for your child's illness
- Acute lymphoblastic leukemia (ALL) (PDF)
- Acute myelogenous leukemia (AML) (PDF)
- Brain tumours
- Ewing sarcoma (PDF)
- Hodgkin lymphoma (PDF)
- Non-Hodgkin lymphoma (PDF)
- Neuroblastoma (PDF)
- Germ cell tumours (PDF)
- Osteosarcoma (PDF)
- Rhabdomyosarcoma and soft tissue sarcoma (PDF)
- Wilms tumour (PDF)
- Retinoblastoma (PDF)
- Rare tumours (PDF)
- Radiation therapy (PDF)
- Radiation Therapy Video
- Chemotherapy - SickKids Resource
- Chemotherapy and safety at home (PDF)
- You can purchase prescription medication from the outpatient pharmacy located in the Ambulatory Care Building
- A-Z List of Medicines: St Jude Children's Research Hospital
Children receiving treatment for cancer are at increased risk of infection. Chemotherapy and radiation destroy the white blood cells that help fight infection in the body. The weakened immune system can no longer keep the bacteria that are normally present in the child's mouth and bowels in check.
Infections can be dangerous for children with cancer. The best way to prevent infection is to practice good hygiene. Good and frequent hand washing is one of the easiest and most effective ways to help decrease infections in your child and prevent the spread of infection to others.
Hand hygiene
- Hand washing video
- Hand hygiene (BC Centre for Disease Control)
Male fertility: Sperm banking video
Complementary and alternative therapies generally refer to therapies that are unconventional and that are not necessarily based on scientific evidence that have been proven to be effective.
As patients or parents, you will face many treatment decisions, including unconventional therapies offered by those outside of the BC Children's Hospital oncology team.
We believe there is a role for complementary and alternative therapies to promote improved quality of life, maintain hope, enhance feelings of control, and encourage healing along the cancer journey. At the same time, there are some people who promise unproven curative treatment at a time when you may be most vulnerable.
Our goal is to create a relationship of openness and trust, and to help you make informed decisions about complementary and alternative therapies. Please discuss with your oncologist if you are considering other options of treatment. We will do our best to help guide you in your decisions about complementary/alternative therapies.
Questions you may want to think about
- What am I hoping this treatment will do?
- What is the research behind the treatment? Are researchers actually looking at how it works on the type of cancer my child has, or is the information based purely on what people say?
- How does the treatment work?
- What are the side effects? (Be wary of claims of 'NO' side effects. No drug or natural product is without side effects)
- What is the cost in both time and money?
Often families ask us about specific treatments, treatment centres and resources. Here are some links that may be helpful. We encourage you to discuss anything you read on these links with your oncology team.
Resources
- BC Cancer: Complementary and alternative cancer therapies web pages
- SickKids: Complementary and alternative therapies
- Mayo Clinic: Drugs and supplements
- Memorial Sloan-Kettering Cancer Centre: Information on herbs, botanicals and other products
Resources and support
The diagnosis and treatment of cancer affect every member of the family. Caring for a child with cancer taxes both your practical and emotional resources.
In general, families are resilient. But even the strongest families need help during tough times. Your family may find extra support helpful as you go through this journey together. Counselling is one way of helping. Please talk to your social worker about the ways they can help you.
Your family is your child’s best support, but there are programs that can help your child have fun and feel good. We hope the following resources will be helpful. As always, please talk to any member of your child’s health-care team if you need more support or help.
BC Children's Hospital patient and family guide
Our patient and family guide (PDF) contains helpful information on how to make your child's journey as comfortable as possible.
Indigenous Health
The Indigenous Health team advocates for and provides help to Indigenous families who are visiting the hospital.
Patient/parent advocate
The patient/parent advocate supports patients and families respectfully and confidentially. They help organize and facilitate teen and family outings and create programs to support the needs of patients and families. They promote an atmosphere of family, community and communication. Suzanne is available on-site Tues/Wed/Thurs 9 a.m. - 3 p.m. and can be reached by email: sdunbar@cw.bc.ca.
Sibling Support Centre
The Sauder Sibling Support Centre provides a safe, short-term (up to 2 hours) play and creative setting for siblings who must be on campus while their sibling receives care. As a non-licensed, volunteer-supported environment, the centre supports children or youth aged three and older. One volunteer will play with up to four children at a time. All children visiting the centre must be toilet-trained and able to feed themselves.
A first-come, first-served booking is required. Please call 604-875-3594 or book online.
Imaginary Friend Society
A cast of characters inspired by the imaginations of kids themselves. Through a series of 20 animated short films, our imaginary friends explain a wide range of complicated cancer topics in a way that kids can understand. The more they understand about their treatment, the less scary it will be.
Website: www.imaginaryfriendsociety.com
Beads of Courage program
Helping families and patients record and tell their own story of courage through beads.
Website: Beads Of Courage
Siblings Coping Together
A group program for siblings of children treated in the Oncology Program.
Contact: Dr. Joanna Chung, Psychology
Phone: 604-875-3003
Oncology Teen Group
Monthly evening group.
Contact: Kristina Jackson, Child Life specialist
Phone: 604-875-2345 ext 7000
Get help - we are here to listen!
Anywhere in BC: 1-800-SUICIDE: 1-800-784-2433
Mental Health Support Line: 310-6789 (no area code needed)
Vancouver Coastal Regional Distress Line: 604-872-3311
Sunshine Coast/Sea to Sky: 1-866-661-3311
- www.YouthInBC.com - online chat service for youth (noon to 1 a.m.)
- www.CrisisCentreChat.ca - online chat service for adults (noon to 1 a.m.)
- Anxiety Canada
- Foundry Virtual BC - young people aged 12-24 and their caregivers can use the app to drop in or schedule a virtual counselling appointment, find peer support, or join a youth or caregiver group
- Patient and family counselling - BC Cancer
- Leukemia & Lymphoma Society support and resources
- Childhood Cancer Family Support (CCFS)
CCFS helps families who are struggling with the financial burden of taking care of their child with cancer or a blood disorder, by providing them with financial aid. They work with the social workers at BC Children's Hospital. Please contact your social worker if you need support - West Coast Kids Cancer Foundation
WCK provides daily, practical support for families navigating a childhood cancer or blood disorder diagnosis. Through WCK programs, kids with cancer/blood disorders experience joy, siblings know they matter, and parents know they are not alone. WCK offers food support programs and Hangouts, a virtual program offering adult-to-kid or small peer group connections - Balding for Dollars
An organization in partnership with the BC Children’s Hospital Foundation that raises funds to support programs that benefit oncology, hematology and bone marrow transplant patients in BC. The money raised goes into programs that support our patients’ quality of life while undergoing treatments and beyond. Donated hair is used to make wigs for children - Brain Tumour Foundation of Canada
A dedicated team of volunteers, patients, survivors, family members, health care professionals and staff, determined to make the journey with a brain tumour one full of hope and support. They work collaboratively to serve the needs of Canadians affected by all types of brain tumours. BrainWave BC provides fun activities for families with a child with a brain tumour. For more information on the BrainWave program and how you can get involved, please contact Karen Malkin-Lazarovitz: karenml@braintumour.ca - Volunteer Cancer Drivers Society
Volunteers work with patients whose family members are unable to take time off work to drive; new immigrants with fewer support systems; or patients who rely on public transit. They offer rides to patients across the Lower Mainland and parts of the Fraser Valley - DIVERSEcity Community Resources
A non-profit organization based in Surrey, BC that helps newcomers to BC settle in. They offer free, multilingual programs and services such as caregiver support programs, family counselling programs, and interpretation/ translations. (There is a fee for translation services) - Island Kids Cancer Association
Provides practical support for children with cancer and their families on Vancouver Island, through all stages of their cancer journey - Highway to Healing
Funds families with children under 19 years of age who need medical treatment that is not available locally. The child must reside in Oliver, Osoyoos or OK Falls in British Columbia - Wigs for Kids BC
An organization that aims to improve the quality of life for kids dealing with cancer or other life-threatening illnesses; and to provide a free wig for every BC child who needs one. Talk to your social worker for information - Camp Goodtimes
Operated by the Canadian Cancer Society, this is a camp for children aged 6 -17 who have a history of cancer. This week-long camp has many fun activities: swimming, arts and crafts, sports, music, and much more. Going to camp with other children, getting care and support from experienced camp counsellors, and simply having fun can help children discover their own strength and help them just be children. Doctors and nurses from the oncology program are part of the camp. Contact the Canadian Cancer Society or see your social worker, nurse or Child Life specialist for more information - Make a Wish Canada
Do special things for children with cancer. These non-profit organizations are dedicated to fulfilling a favourite wish of children aged 3-17 years. Ask your social worker or nurse for more details - Starlight Children’s Foundation of Canada
Provides entertainment, education and family activities that help children cope with a serious illness. Starlight has a lot of outpatient, hospital-based, and web activities that support children and families from diagnosis through the entire course of medical treatment - BC Family Residence Program
Provides accommodation assistance to enable families to stay together when their child requires medical care at BC Children's Hospital or Sunny Hill Health Centre for Children, including premature babies and newborns with other health concerns. They also provide enhanced travel assistance through air transportation for patients of all ages
Children who have had treatment for cancer may find it challenging to go back to school. A child may have side effects that teachers should know about. They may look different, or have lower energy. Having a brain tumour can affect your child’s learning.
The most important part of sending your child back to school is to plan ahead. This will help make the return to school more successful and supportive for your child, your family and the school.
There are resources to help plan for your child’s return to school, and ongoing support. Your nurse clinician in the outpatient clinic can give you information that may make going back to school easier.
- Monkey in My Chair Program: The program provides each child with a "monkey kit", which includes a big stuffed monkey that takes their place in school when they can't be there. It includes a backpack and a book to help teachers explain to students the situation their classmate is facing, along with other items. This kit is free of charge for children aged 4-11 years old
- School Support: Guidance for school personnel and parents from CureSearch for Cancer
- Children and youth with support needs: Information from the Ministry of Children and Family
- BC Brain Injury Association: Improving the quality of life for all Canadians affected by acquired brain injury, and promoting its prevention
- New diagnosis guide for teens (PDF)
- Facts for teens (BC Cancer)
- www.YouthInBC.com: Online chat service for youth (noon to 1 a.m.)
- Breathr app: Free app to get started with mindfulness
- She Defines Strength: A non-profit organization that fosters community and support for young female cancer fighters, survivors, and their champions
- Cancer Connect: Learn, share and connect with other teens dealing with cancer
- Re-Mission: A video game for young adults living with cancer
- The Children's Oncology Group Family Handbook for Children with Cancer: An excellent resource that we give to parents when their child has been diagnosed with cancer
- APHON Pediatric Oncology & Hematology Patient and Family Resources
- Chemo to the Rescue: A children's book about leukemia
Central venous line care at home
- Central Venous Line: What you need to know (PDF) - July 2024
- Caring for the Exit Site and Dressing Change (PDF) - July 2024
- Heparin Locking (PDF) - July 2024
- Changing the Cap (PDF) - July 2024
- Ports
- About Your Child's Implanted Port (PDF) - July 2024
- Flushing Your Child's Implanted Port (PDF) - July 2024
- Insuflon Catheter (PDF) - July 2024
- Subcutaneous Injections (PDF) - July 2024
- How to Use a Needle and Syringe (PDF) - July 2024
- Chemotherapy and Safety at Home (PDF) - July 2024
Adolescent survivors of cancer can have many feelings when they finish high school. It has been a big challenge for your child, and they have likely worked hard to get there. But life after high school and worry about what it might look like can be confusing and concerning.
Vocational support might be a useful resource for your child. Vocational counsellors work with people to help them find jobs that fit well with their strengths and challenges. They can help your child prepare to apply for jobs and interviews.
- G.F. Strong Rehabilitation Centre
The centre has a vocational rehabilitation program for young adults. The program helps them work on barriers that people with disabilities may face. It aims to get people ready for work by helping with job skills and preparation. To find out more, ask your neuro-oncology nurse clinician - West Coast Group (WCG)
Helps people with disabilities in British Columbia develop skills and independence, and learn how to be part of the workplace - Open Door Group
Supports employers to hire people with physical disabilities and other barriers to employment
Over 80% of children with cancer are now cured of their disease. Along with excellent survival rates, achieving optimal quality of life is important. Studies have shown that at least 65% of adult survivors of childhood cancer develop late health effects from their disease and/or treatment. Following patients closely for potential problems after treatment allows cancer survivors to enjoy full and active lives.
- Childhood Cancer Survivors: A practical guide to your future (3rd edition, 2012) by Kathy Ruccione, Nancy Keen and Wendy Hobbie
- Long-term follow-up clinics at BC Children's Hospital
- Cancer Survivor Link: Your link to care after cancer
- Childhood Cancer Canada Foundation: The country's leading foundation dedicated entirely to the fight against childhood cancer
- National Children’s Cancer Society: Beyond the Cure is a survivorship program of the National Children’s Cancer Society
- Live Strong Foundation: Looks at the experiences of the cancer community, finds problems and develops solutions. Then they roll them out to help more people in more situations
- Stupid Cancer: A non-profit organization that empowers young adults affected by cancer through innovative and award-winning programs and services
- Rebounders Canada: Adult survivors of childhood cancer: A Canadian non-profit organization that offers support and networking opportunities to adults who have survived childhood cancer