Getting Help – Community Resources for Parents of Children with Brain Tumors
When your child has a brain tumor, getting help from others is critical. The isolation that sometimes affects parents of children with cancer can make asking for help difficult. Getting the Help You Need is a comprehensive resource about how to:
- Ask for help from friends and family
- Organize and schedule the help you need
- Access community resources (there are several listed resources that apply to children, although most are for adults)
- How to hire home care, as well as options for palliative and hospice care, if needed
- General financial help
Fortunately, there are many additional sources of support for children with brain tumors and caregivers.
Support groups for child brain cancer patients, parents and siblings
Support groups remain one of the most essential tools for parents. These groups connect you with others in similar situations and provide peer-to-peer communication from individuals who understand your everyday battles and difficult choices. It can also be helpful and empowering to share your own experience with others.
- The ABTA maintains a list of brain tumor support groups, grouped by state. It also runs ABTA Connections, a private, online support group with subgroups for patients, family members, caregivers, as well as for parents of children with brain tumors.
- Contact your local chapter of the American Childhood Cancer Organization to find support groups in your area.
- Super Sibs! is a unique support group specifically geared toward siblings of cancer patients. The site provides an outlet for children to share with others who are facing similar issues and gives them an opportunity to share their feelings.
Camps for children with brain cancer
Camp provides children with brain tumors and survivors an opportunity to experience a freedom they might not have felt since they were diagnosed. The goal of camp is to help kids be kids again, without a focus on their illness or its repercussions. Camps can be for whole families, or for patients only, which provides a break for parents and siblings who know their child is in good care with an experienced and caring staff.
The Children’s Oncology Camping Foundation can provide you with a list of camping programs and adventure trips all over the U.S. The Children’s Brain Tumor Foundation sponsors Brain Tumor Family Camp at Wish-fulfillment agencies for children.
In addition to camps, a number of organizations provide services and experiences that help children with life-threatening illnesses make their dreams come true. Every organization has their own criteria for the patient’s age and diagnosis in addition to the types of wishes they grant. Some organizations require a referral from your health care team.
Each organization has different requirements and limitations regarding the types of wishes they grant. You can find out specific details by looking at each website and contacting the organization directly. Often, they require a referral by a member of your health care team, family member, or the patient. Age and diagnosis are other requirements that differ with each organization.
Travel assistance for children with brain tumors
Sometimes families travel over great distances to get specialized care for their child. There are many resources to help with these expenses by offering free- or low-cost travel and lodging options while the child is in treatment.
Parents and experienced social workers recommend persistence when it comes to asking airlines for courtesy fares on commercial airlines. Other resources include:
- Delta SkyWish and Miles for Kids in Need (American Airlines). These programs transfer donated frequent-flyer miles to a number of charities to provide free travel for those in need. Visit the websites for more information.
- The Air Care Alliance, 888-260-9707
- Angel Flight, 918-749-8992
- Corporate Angel Network, 914-328-1313
- LifeLine Pilots, 800-892-2757
Wherever your child is receiving treatment, the social worker or visitor services personnel may be able to guide you to local hotels that provide lodging at a free or reduced fee for visiting families. In addition, many individual organizations provide housing, sometimes for a nominal fee depending on ability to pay, for families traveling for medical care.
- The American Cancer Society has its own housing facilities in addition to hotel partnerships.
- Joe’s House lists cancer treatment centers and hospitals across the country with nearby hotels that offer discounts to patients.
- Ronald McDonald House operates more than 340 communal housing facilities around the world, providing families with private bedrooms in addition to activities and support services for families.
- The families of children receiving treatment at St. Jude Research Children’s Hospital may be eligible for lodging at Target House. The facility features 96 fully furnished apartments and serves families whose children’s treatment is expected to last three months or longer.
Visit the ABTA’s Travel and Housing Assistance page for even more housing and travel resources for brain tumor patients and their families.
Financial assistance for children with brain tumors
Many organizations and foundations provide financial assistance for children. Some require a referral from a medical professional. For a comprehensive list, visit the section for financial assistance for children with brain tumors on the ABTA’s Financial and Medical Assistance page.
Home care options
You may find that you need help caring for your child at home. Fortunately, there are a wide variety of health and service providers who can come to your home, with some available 24 hours a day, seven days a week. Home care can include anything from professional nursing services to respite care, which provides parents with an opportunity to leave the child with a knowledgeable caregiver.
The following tips can help you choose someone to care for your child at home:
- Create a checklist of your needs. Do you need skilled nursing care or do you need someone to provide you with a break? Do you need help with household care, which can include shopping and cleaning? What hours will you need care?
- Check whether your insurance company is includes home care benefits in your policy, and whether or not you need a referral from a physician to receive coverage for home care.
- Seek referrals from friends, family and others who have cared for brain tumor patients. You can also ask for a recommendation from your health care provider.
Palliative care provides specialized medical care for those with serious illnesses. Palliative care is not end-of-life care, although some people may confuse the terms. Instead, palliative care helps improve the quality of life for the entire family at any point in the brain tumor journey. You may even choose to look into palliative care as soon as your child is diagnosed. This approach can be used throughout treatment, and focuses on pain relief and physical wellbeing as well as stress reduction, counseling and support.
The social worker or a member of your care team should be able to tell you more about the palliative care options available to you. For more information, read more about palliative care.
Hospice care is a choice that families make once they and their care teams decide to end treatment. Hospice care for children is led by an experienced team of pediatric-trained staff, including specialized physicians, nurses, psychologists and counselors. They focus on the needs of children and their families, and help children lead the best life they can for as long as they can.
Read more about hospice care or ask your health care team’s social worker.
The ABTA and other organizations provide many resources for children with brain tumors and their families.
- Read more about brain tumors in adolescents and children
- Join the ABTA’s online support community or find a support group in your area.