Your Child Has Cancer: Canadian Support Resources That Can Help

by Sue McKechnie, CKN Childhood Cancer Advocacy Co-Editor

When your child is diagnosed with cancer, your world turns upside down. All your best laid plans fall to the wayside and in an instant you find yourself in uncharted waters. The good news is that Canada has a network of resources that can ease the emotional and financial stress for all the members of your family.

There are 16 hospitals in Canada dedicated to the healthcare of children. Each one of these facilities will have staff devoted to helping families navigate through their childhood cancer journey. The list below only scratches the surface of what resources are available, for a full list of services in your area, consult with your child’s health care team.

Financial Assistance

In Ontario the POGO Financial Assistance Program helps families with out of pocket expenses for food and accommodation and in some cases child care for siblings. For more information go to www.pogo.ca

Ontario’s Trillium Drug Program may help cover expenses for drugs that are not covered by OHIP.

Certain government insurance programs may help care givers take the time they need to take care of their child as they go through treatment such as the Employment Insurance, Compassionate Care Benefits and the Parents of Critically Ill Children Program.

Ensure that you have investigated any benefits that you have with your employer. Many health benefit packages include a long term disability or catastrophic clause that may help ease your family’s financial burden.

Finally, ensure you inquire with your child’s health care team as each hospital may have local support groups that offer financial aid.

Accommodations

Ronald McDonald Houses across the country provide a home away from home for families of seriously ill children. There are 14 across Canada with most conveniently located near the local children’s hospital. For a full list go to www.rmhcanada.ca

Many children’s hospitals also have hotels close by that will offer discounts to families who have a child in the hospital or who need to stay close by for treatment. Consult with your child’s health care team for this local list.

Also check with your local health care team for any government support when it comes to staying close to your child’s health care facility. For example the government of British Columbia provides a BC Family Residence Program for just such instances.

Transportation

The Canadian Cancer Society’s Wheels of Hope program matches volunteer drivers in a particular area with families who need transportation back and forth to treatment. For more information about the Wheels of Hope Program visit www.cancer.ca/wheelsofhope

Many children’s hospitals have a local assistance program or clubs such as the Shriners or Lions Club that may offer financial aid when it comes to the cost of transportation and parking or transportation itself. Check with your child’s health care team for these details.

Online Communication Service

When your child is in the hospital or undergoing treatment, loved ones rally around you with their support. However it’s time consuming to provide an update to each and every one of them as you take care of the needs of your family as well. Caringbridge.org provides free, safe and personal health journals that allow your family and friends to connect with you online. You provide one, thorough update and all those that follow your page will receive the same updated information. They can send words of encouragement which you can read as your schedule permits. Not only will you keep all those rallying around you in the know; you will have an ongoing record of your child’s health care journey.

Support Groups

Tangible support like financial aid, accommodation and transportation are essential as your family traverses the path of a childhood cancer diagnosis but intangible support such as sibling groups, online resources and connecting with other families travelling the same path are paramount to the whole family’s emotional health. The following resources can help ease the loneliness that childhood cancer can bring to a newly diagnosed family.

The Brainwave Program connects families whose child has been diagnosed with a brain tumour. The program offers events that bring families together, online resources, as well as a Super Siblings program. Virtual support groups offer families the opportunity to participate from anywhere in Canada while in-person groups can be found in major centres across the country.

The British Columbia Childhood Cancer Parent’s Association offers resources and financial aid to families within the province of B.C.

Kids Cancer Care Foundation of Alberta offers scholarships, tutoring, peer support, family groups and teen groups in fun, friendly settings.

Kids with Cancer Society offers support to families from northern Alberta and within the Northwest Territories including sibling support, teen groups and grief counselling.

Candlelighters Childhood Cancer Support Programs offer group sessions, events as well as some financial aid to families in various locations across Ontario.

Northern Ontario Families of Children with Cancer offers financial support programs, bursaries, educational support and a variety of other programs designed to reduce costs associated with travelling. Many families in the northern part of the province often have to travel great distances to a hospital dedicated to children’s health.

Ontario Parents Advocating for Children with Cancer (OPACC) provides support groups throughout the province of Ontario as well as runs support drop-in groups inside the Hospital for Sick Children in Toronto.

Leucan in Quebec offers a wide variety of programs for families including support groups, financial assistance, school awareness programs and bereavement counselling.

Candlelighters of Newfoundland and Labrador supply information as well as family meetings, scholarships as well as a camp experience to those families in the Atlantic Provinces.

Recreational Programs

The Canadian Association of Pediatric Oncology Camps (CAPOC) is a national collaboration of independently operating children’s oncology camping organizations committed to excellence ensuring that every child affected by childhood cancer has the opportunity for a safe, first-class pediatric oncology camping experience. CAPOC has 16 camping organizations across Canada. Visit their website for a full list of camps and locations.

Wish Granting Organizations

The following organizations grant wishes for children suffering from a serious illness.

Children’s Wish Foundation of Canada or call 1–800–267-WISH

Make A Wish Canada or call 1–888–822–9474

Starlight Children’s Foundation of Canada or call 1–800–880–1004

The Sunshine Foundation or call 1–800–461–7935

Other Online Resources of Information

Canadian Cancer Society

Cancer Care Ontario

Childhood Cancer Canada

Health Canada

Leukemia Lymphoma Society

About Kids Health

Kids Cancer Care

Cancer Knowledge Network

A childhood cancer diagnosis changes the very landscape of your family dynamic. However, it’s important that you seek help when it’s needed. You are not alone in this journey. Many different kinds of support are available both locally and nationally to help you navigate through this tumultuous terrain.

Sue McKechnie learned her young son, Shawn had a brain tumour in May of 2006. When he passed away 18 months later after the rollercoaster of diagnosis, treatment, hope and terminal illness, she realized that even though he was gone from this world, he continued to send her courage from another. The message was clear — get out there and help other families sharing this journey. Since then Sue has written the book ‘A Sippy Cup of Chemo; A Family’s Journey Through Childhood Cancer’ hoping to spread the message to other bereaved families that they are not alone. “It’s wonderful to talk to other parents who truly understand — the grief, the guilt and all the myriad of emotions you face. We didn’t choose to be part of this group, nor would we wish it upon anyone else but here we are and we need to support each other.” All the proceeds from her book are donated to Meagan’s Walk; benefiting brain tumour research at SickKids Hospital, a charitable organization whose committee Sue is a member of. Sue continues to advocate for funding and awareness of childhood cancer through blogging, speaking engagements and her work through Meagan’s Walk.