Pediatric Brain Tumors: Care, Support and Family Resources

Parent & Pro Picks
Written By Julie Wilson

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 with a pediatric brain tumor diagnosis.

This guide is not meant to replace medical advice or the consultation of your child’s physician and care team. Please consult a trusted medical professional before making any care decisions for your child.

BUILDING YOUR BRAIN TUMOR KNOWLEDGE BASE

Finding accurate information related to brain tumors and pediatric cancer can be daunting and exhausting. You may find that well-meaning family and friends will send you information that they have found on the internet or social media. 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 The DIPG/DMG Collaborative, The Glioblastoma Support Network, and the Collaborative Ependymoma Research Foundation. If you are looking for information related to a specific type of brain tumor that is not listed here, be sure to carefully review the information you find to ensure that the source material is accurate and current.

Some additional resources that may be helpful to you as you begin to build your brain tumor knowledge base include:

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. It can feel overwhelming to find yourself in this position, so be sure to ask your care team and hospital social workers for support in helping you to get organized. 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.

  • BRIAN, an online app which has been developed by The Brain Tumour Charity to help people cope with a brain tumor. The app includes symptom trackers, clinical trial finders, calendar functions, and guides to help you have meaningful conversations with medical providers. Although the app was developed in the United Kingdom and optimized for individuals living in the UK, it has many valuable resources and functions for individuals based in the United States.

Not all hospitals in the United States have equal access to the latest treatments or clinical trials for pediatric brain tumors. Treatments are constantly changing and evolving with the goal of improving the outcome for every child who receives a brain tumor diagnosis. You may wish to seek a second opinion or find a clinical trial (which is a study investigating new treatment protocols) if you are not satisfied with the course of treatment recommended by the team that initially evaluates your child. Some resources that can help you in this process include:

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. Very young children will have trouble understanding what is happening to their bodies, and why their lives are suddenly so different. And older children and teens may experience significant emotional trauma and stress as they look at the seriousness of the diagnosis they have just received. While your care team can help you answer questions during appointments and via phone/messaging programs, they will not always be there when a concern or inquiry surfaces. Here are some resources that can help you to prepare for the tough conversations, or proactively answer questions that may pop up:

SIBLING SUPPORT RESOURCES

If there are other children in the home, beyond the child with the brain tumor diagnosis, it is important to prepare those children for what to expect while their sibling battles cancer. Siblings may feel scared, left out, and envious of the added attention their brother or sister is receiving. These resources and other resources found in the Red Treehouse Sibling Support Pathway can help you navigate the delicate relationship between pediatric cancer patients and their siblings during treatment and beyond.

  • 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. This form can help others to know what things a child is, and is not, comfortable discussing or sharing with others, and the unique challenges that are faced by the siblings of pediatric cancer patients.

  • This resource guide from St. Jude’s Children’s Research Hospital includes videos, tips and talking points to help caregivers prepare the siblings of young cancer patients for the battle ahead.

  • This booklet from the National Cancer Institute is designed specifically for teen siblings of cancer patients. It includes age appropriate scientific information related to cancer, essay prompts to help teens understand emotions, and suggestions for how to further conduct research in an age where there is lots of misinformation on the internet.

FINDING FINANCIAL SUPPORT

A pediatric brain tumor diagnosis comes with additional challenges beyond just the fight against the tumor itself. There may be a loss of income as one or more parent has to miss time at work (or leave their job all together). Changes in your child’s physical abilities may require you to make modifications to your home or vehicles. And travel for treatment with specialists or care at specialized research facilities can result in unexpected costs. Finding 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.

FINDING JOY IN LIFE WHILE BATTLING A BRAIN TUMOR

When a child receives a brain tumor diagnosis it can quickly take over every aspect of their family’s life. 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 (check program websites for specific eligibility requirements):

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

  • A brain tumor diagnosis often comes with time spent away from school for appointments and treatments. Whether it is only a day here and there or maybe weeks or months at a time, this can be hard for the child and their classmates. Monkey in My Chair provides children with a “monkey kit” that can take their place in school when they are unable to be there. The kits include the monkey with a backpack, a book to help teachers explain to students the situation their classmate is facing and how it affects them, along with other items that can be utilized by the child and/or their classmates to stay connected.

  • The Justin Jennings Foundation was established in memory of a young man who battled brain cancer in his teens and twenties. Families with a member undergoing cancer treatment are eligible to use Justin’s Beach House, a fully accessible home in Bethany Beach, Delaware, free of charge.

  • Do it for the Love is a foundation dedicated to bringing comfort and hope to seriously ill individuals through music. You can nominate a patient and their family to enjoy a live musical performance of their choice through this program.

  • 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. These resources may be helpful for your family should that time come:

  • 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.

Additional resources for your family are available in our searchable directory on RedTreehouse.org. If you are aware of an additional resource for families with a child battling brain cancer that are not yet listed on RedTreehouse.org, use the add a listing feature to share the resource with our team and other families in need.

Resource research contributions from Case Western Reserve University School of Medicine students: Shirley Yee (Physician’s Assistant, 2022), Roshni Kailar (Medical Student, 2024), Kong Pan (Medical Student, 2024), Ansh Desai (Medical Student, 2024)

Photo of Ava, 2015 RMH Cleveland guest, courtesy of Lisa Kish Photography

Julie Wilson
Next

Who’s Who on Your Child’s Care Team?