Pediatric Brain Tumors: Care, Support and Family Resources

Approximately 4,000 children in the United States will be diagnosed with a primary brain tumor this year, leaving their parents, caregivers, loved ones and themselves with many questions about what comes next. In this guide you will find a variety of resources to help your family as you begin to navigate life following a pediatric brain tumor diagnosis.

Building Your Brain Tumor Knowledge

Finding accurate information related to brain tumors and pediatric cancer can be daunting, exhausting, and full of misinformation. To ensure that the information you are reading and sharing with others is the most accurate and up to date, it is best to stick to information provided by verified sources such as reputable brain tumor foundations and research hospitals. Organizations like the American Brain Tumor Association and The National Brain Tumor Society, are a great starting point for general information about brain tumor diagnoses and treatments. Organizations with information specific to pediatric brain tumors such as the Children’s Brain Tumor Foundation, and the Childhood Brain Tumor Foundation, can help you find information that is specific to brain tumors diagnosed in kids. When in doubt, share the information you have found or been given by others with your child’s care team to get their feedback about the source of the material.

There are over 120 different types of brain tumors each with their own treatment plans and unique patient needs. Foundations/organizations exist to help families understand the implications of a specific brain tumor diagnosis. Some examples include My DIPG Navigator, The Glioblastoma Support Network, and the Collaborative Ependymoma Research Foundation.

As you begin to build your brain tumor knowledge base, these tools can help you become familiar with common terms used by your medical team.

• The Brain Tumor Jargon Buster, an online dictionary of terms related to brain tumors.

• The Pediatric Caregiver Resource Center of the American Brain Tumor Association.

Organization and Treatment Search Tools for Brain Tumor Patients and Caregivers

You may be surprised to find how much of a role you will play in advocating for your child’s care needs during the cancer treatment process. Since you spend more time with your child, your medical care team will rely on you to keep them up to date on your child’s symptoms, changes to mood or dietary habits, and potential reactions to medications or treatments. Some helpful tools that can assist you as you prepare for appointments, visits, and check-in calls with your child’s doctor include:

• These treatment monitoring tools from the American Cancer Society.

• The Starfolio Resource Notebook from the Pediatric Brain Tumor Foundation which is available for download or in printed format (free of charge), and includes templates to help manage your child’s care, their absences from school, and to prepare for doctor’s visits.

Not all hospitals have equal access to the latest treatments or clinical trials so you may find yourself seeking treatment options, or a second opinion from another hospital. Some resources that can help you in this process include:

• The Clinical Trial Finder from the Pediatric Brain Tumor Foundation.

• This article from the American Cancer Society discusses the process of seeking a second opinion following a cancer diagnosis.

Talking with Your Child About Their Diagnosis

As a caregiver for a child with a brain tumor diagnosis you can expect a lot of questions, regardless of age, from the person at the very center of this experience. These resources can help you prepare for the tough conversations, or proactively answer questions that may pop up:

• This guide to talking to your child about their brain tumor, from St. Jude’s Research Hospital, can help you choose age-appropriate language and talking points for children of any age.

• The Pediatric Brain Tumor Foundation created the Imaginary Friends Society video series to help children understand their brain tumor diagnosis. The animated series includes kid-friendly videos covering a wide range of cancer-related topics.

• The American Childhood Cancer Association offers a variety of free books to families who have a child with a cancer diagnosis.

Sibling Support Resources

If there are other children in the home it is important to prepare those children for what to expect while their sibling battles cancer. Siblings may feel scared, left out, and even envious of the added attention their brother or sister is receiving. These resources and other resources found in the Ronald McDonald House Resource Link Sibling Support Pathway can help you navigate the delicate relationship between pediatric cancer patients and their siblings.

• SuperSibs is a program from Alex’s Lemonade Stand, and offers resources for siblings of cancer patients. Among the most important and valuable resources in the SuperSibs collection is a form that parents and their children can fill out together to give to teachers, coaches and other important people in a child’s life a deeper understanding of what the family is going through.

• This booklet from the National Cancer Institute is designed specifically for teen siblings of cancer patients.

Finding Financial Support

A pediatric brain tumor diagnosis comes with additional challenges beyond just the fight against the tumor itself. Finding financial support resources for your family can become a job in and of itself. Here are some resources that may be helpful to you as you look for support for your family.

• This guide from the Pediatric Brain Tumor Foundation has practical tips for navigating medical bills and insurance.

• This toolkit from the Childhood Brain Tumor Foundation has videos to help you understand insurance processes and disability options.

• Dollar For helps families apply for medical bill forgiveness.

• Visit our financial support pathway for links to organizations that provide grants for daily living expenses and more.

Finding Joy in Life While Battling a Brain Tumor

Finding opportunities to create joyful memories during treatment are vital to helping the patient, their caregivers, and their siblings. In addition to the well known organizations like Make-a-Wish, there are a variety of programs dedicated to bringing joy to families of seriously ill children. Here are some unique organizations that offer experiences and gifts to bring joy to families whose children have a serious illness:

• The Children’s Oncology Camping Association can help you to find camping programs specific to the needs of your family.

• Monkey in My Chair provides children with a stuffed monkey that can take their place in school when they are unable to be there.

• Justin’s Beach House is a fully accessible home in Bethany Beach, Delaware, free of charge for families fighting cancer.

• Do it for the Love is a foundation dedicated to bringing comfort and hope to seriously ill individuals through live music experiences.

• Find additional resources dedicated to helping your family find joy during this challenging time in the Wish-granting Support Pathway.

Palliative Care, Hospice, and Grief Support

With advances in research and improved care and treatment options, there is hope for a future where all brain tumors are treatable and curable. At this time, however, there are several pediatric brain tumors with very poor outcomes and high mortality rates. Your family may find that they are faced with tough decisions related to providing comfort and end of life care for your child.

• This video explains the differences between palliative care and hospice care (which many people incorrectly assume are the same thing). Palliative care can be offered alongside curative treatments and is not just for patients who are at the end of their life. Be sure to ask your care team if palliative care is something that can help improve your child’s quality of life while they are battling a brain tumor.

• No Longer Voiceless is a non-profit organization dedicated to helping patients who are at the end of their life tell their story and share meaningful messages with their families.

• The Clayton Dabney Foundation provides financial assistance to pediatric cancer patients who are at the end of their life and seeking hospice care.

• The Dougy Center has a national database for grief support centers and support groups.

  Read More from the Ronald McDonald House Resource Link

  • Pediatric Palliative Care: What is it and Who Needs it?

  • Pediatric Hospice: Empowering Children & Families