Ependymoma:

A Comprehensive Guide

For Pediatric Cancer

Ependymoma:

A Comprehensive Guide

For Pediatric Cancer

Ependymoma:

A Comprehensive

Guide For

Pediatric Cancer

What is Pediatric Ependymoma?

Pediatric ependymoma, a rare and formidable medical condition that primarily afflicts children and adolescents, presents a complex medical challenge for patients, families, and healthcare providers alike. Originating from ependymal cells lining the fluid-filled spaces of the brain and spinal cord, this type of tumor can be particularly distressing for young patients and their caregivers upon diagnosis. Moreover, as the tumor grows and spreads, it exerts pressure on surrounding tissues, thereby affecting the normal functioning of the brain or spinal cord.

In this comprehensive guide, we will delve into the most critical aspects of pediatric ependymoma, examining its symptoms, diagnosis, outlook, and treatment options.

There are several subtypes of ependymoma and each has different characteristics and treatment options. The types of pediatric ependymoma typically include:

  • Subependymoma (Grade I; rarer in children)
  • Myxopapillary ependymoma (Grade I)
  • Ependymoma (Grade II)
  • RELA fusion–positive ependymoma (Grade II or Grade III)
  • Anaplastic ependymoma (Grade III)

Examining the grade of a tumor is crucial, as it describes how abnormal the cancer cells appear under a microscope. It also predicts the likelihood of the tumor’s growth and spread. Notably, low-grade (grade I) cancer cells bear a closer resemblance to normal cells compared to their high-grade counterparts (grade II and III). Furthermore, the growth and spread of grade I cancer cells tend to be slower than that of grade II and III cancer cells.

How Common is Pediatric Epenymoma?

 

  • Ependymoma, a relatively rare type of brain tumor, constitutes approximately 5% of all pediatric brain tumors. While it can manifest at any age, it is most frequently diagnosed in children under 5 years old. Notably, boys are slightly more predisposed to developing ependymoma than girls.

What is the Prognosis for Pediatric Epenymoma?

  • The five-year survival rate for pediatric ependymoma is approximately 70-80%. However, it is crucial to recognize that survival rates can vary widely, contingent upon the specific characteristics of the tumor and the individual circumstances of the child.

What are the Symptoms of Pediatric Ependymoma?

 

  • The symptoms of pediatric ependymoma can exhibit variations based on the location and size of the tumor. However, certain common symptoms include headaches, seizures, changes in vision or hearing, weakness or numbness, and/or balance problems.

Diagnosis & Grading

Diagnosing ependymoma typically involves a combination of imaging tests, such as an MRI or CT scan, and a biopsy to examine the tumor tissue under a microscope. The biopsy can help determine the tumor’s subtype and grade, which can guide treatment decisions.

Pediatric ependymoma can be classified based on where in the brain the tumor is located and whether it has spread, and this grading system is as follows:

 

  • Grade 1: low grade tumors. This means the tumor cells grow slowly, and the subtypes include subependymoma and myxopapillary, which usually occur in the spine.
  • Grade 2: low grade tumors and can occur in either the brain or the spine.
  • Grade 3: malignant (cancerous) and fast-growing tumors, and the subtypes include anaplastic ependymomas.

Treatment Options for Pediatric Ependymoma

The treatment of pediatric ependymoma is highly individualized and hinges on several crucial factors, such as the tumor’s location, size, grade, and the child’s overall health. In navigating this complex landscape, parents and caregivers can engage in meaningful discussions with their child’s healthcare provider to explore various options. These may encompass:

Chemotherapy: Chemotherapy uses drugs to combat cancer cells. It may be used in combination with surgery and radiation therapy, depending on the tumor’s characteristics.

Radiation Therapy: Radiation therapy uses high-energy radiation to battle cancer cells. It may be used after surgery to target any remaining cancer cells. For very young children, particularly those under the age of three, radiation therapy may be delayed or avoided if possible due to the potential risks to developing brain tissue.

Surgery: Surgical resection is typically the primary treatment for ependymoma. The goal is to remove as much of the tumor as safely as possible without causing additional neurological deficits. In some cases, the tumor may be in a location that makes complete removal difficult, and the surgeon may perform a partial resection to relieve pressure on the brain and spinal cord.

Clinical Trials: Research into pediatric ependymoma is ongoing,  and some children with ependymoma may be eligible for participation in clinical trials to explore new treatments and therapies. It is essential to work with your child’s healthcare team to stay up-to-date on the latest research and treatment options.

Financial Resources

Support Networks

Glenn Garcelon Foundation

The Glenn Garcelon Foundation is a 501(c)(3) non-profit organization which exists to improve the quality of life of brain tumor survivors, caregivers and their families by providing emotional and financial support.

Website: https://www.glenngarcelonfoundation.org/

Phone: 503-969-7651

Family Reach

Family Reach can provide assistance to families with a child facing cancer (aged 0 to 17), young adult patients (aged 18 to 30) with or without children in the home, and adult patients (31 and older) who have children aged 18 and under.

Website: https://familyreach.org/ftp/

Phone: 973-394-1411

WINKS- Empathy in Action

The Empathy in Action Grant Program provides financial assistance to brain tumor patients and caregivers with demonstrated financial need in accordance with WINKS’ charitable purposes. Patients and caregivers whose annual household income is less than 300% of the Federal Poverty Guidelines are eligible for assistance under this program.

Website: https://winksbt.org/empathy-in-action#62e97dd7-74cd-4855-9424-8efcdb4d0432

Partners in Care

Grant to assist with temporary lodging, transportation, food; you must be within 6 months of a cancer diagnosis, and must reside or receive treatment in Alabama, Arkansas, California, Florida, Indiana, Kentucky, Massachusetts, Missouri, Nevada, North Carolina, Oklahoma, Rhode Island, South Carolina, Texas, Washington, and West Virginia.

Website: https://www.yourpartnersincare.org/apply/

Phone: 888-850-1622

Bringing Hope Home

Financial assistance with one time grant for household expenses, and you must live in specific areas in PA, NJ, NY and Maryland. See website for detailed info on locations, and this is for patients on active cancer treatment.

Website: https://bringinghopehome.org/

Phone: 484-580-8395

Allyson Whitney Foundation

Our ‘Life Interrupted Grants’™ cover a wide range of needs, including (but not limited to): current and residual medical bills, rent, utilities, car and health insurance premiums, IVF treatments, integrative therapies, travel expenses, and medical hair pieces. If you think that you might be an ideal candidate for the grant, contact your patient navigator to request an application during our open request period.

Website: https://allysonwhitney.org/grants/

Email: grants@allysonwhitney.org

Mission 4 Maureen

Mission 4 Maureen helps to provide financial assistance to brain tumor patients, burdened by the staggering cost of treatment.

Website: https://mission4maureen.org/

Phone: 440-840-6497

CERN Foundation

Established in 2006, the CERN Foundation is now a designated program of the National Brain Tumor Society dedicated to improving the lives of those affected with ependymoma. Thanks to the efforts of an international network of collaborators, the CERN Foundation has been responsible for the publication of over 50 peer-reviewed papers in leading medical journals.  

Website: cern-foundation.org

The American Brain Tumor Association

The American Brain Tumor Association is the nation’s oldest nonprofit organization dedicated to brain tumor education, support and research. In 1973, the ABTA was founded by two mothers determined to find answers that, at the time, were not yet available. Since then, the ABTA has funded more than $34 million in brain tumor research and now reaches a national audience, providing educational and support resources.

Website: abta.org

Phone: 773-577-8750

National Brain Tumor Society

National Brain Tumor Society (NBTS) unrelentingly invests in, mobilizes, and unites the brain tumor community to discover a cure, deliver effective treatments, and advocate for patients and caregivers.

Website: braintumor.org

Phone: 617.924.9997

End Brain Cancer Initiative

EBCI is a steadfast advocate on behalf of the brain tumor community in the United States & beyond. We are here to help patients, caregivers, and their loved ones as they navigate the complicated path of the brain tumor journey.

Website: endbraincancer.org

Phone: (425) 444-2215

MUSELLA FOUNDATION

The Musella Foundation for Brain Tumor Research & Information, Inc. is a 501(c)(3) nonprofit public charity devoted to empowering brain tumor patients and their families.

Website: virtualtrials.org/musella.cfm

Phone: 888-295-4740

Pediatric Cancer Research Foundation

Since 1982, the Pediatric Cancer Research Foundation (PCRF) has been chasing one ambitious goal: to make it possible for all children facing childhood cancer to beat their disease and realize their full potential. We will achieve this by powering cures where none exist and giving rise to less toxic regimens that have fewer side effects.

Website: pcrf-kids.org

Phone: 800.354.7273

American Childhood Cancer Organization

The American Childhood Cancer Organization (ACCO) was founded in 1970 by parents of children diagnosed with cancer. Formerly known as Candlelighters, ACCO is the nation’s oldest and largest grassroots organization dedicated to childhood cancer.

Website: www.acco.org

Pediatric Brain Tumor Consortium

The Pediatric Brain Tumor Consortium (PBTC) was formed by the National Cancer Institute (NCI) in 1999 to improve the treatment of primary brain tumors in children. The participating academic centers and children’s hospitals are responsible for the diagnosis and treatment of a large percentage of children with primary brain tumors in the United States and Canada.

Website: pbtc.org

Children’s Brain Tumor Foundation

The Children’s Brain Tumor Foundation (CBTF) was founded in 1988 by a group of dedicated parents, physicians, and friends to improve the treatment, quality of life, and the long term outlook for children with brain and spinal cord tumors through research support, education, and advocacy to families and survivors.

Website: cbtf.org

Phone: 212-448-9494

Pediatric Brain Tumor Foundation

The Pediatric Brain Tumor Foundation® (PBTF, EIN/Tax Identification Number: 58-1966822) is committed to leading the way toward a future without childhood cancer.

Website: curethekids.org

The Children’s Brain Tumor Network

The Children’s Brain Tumor Network is dedicated to driving innovative discovery, pioneering new treatments and accelerating open science to improve health for all children and young adults diagnosed with a brain tumor.

Website: cbtn.org

Conclusion

A diagnosis of pediatric ependymoma can be challenging for both the child and their family however, it is important to remember that you are not alone. There are many resources and support networks available to help you navigate this challenging time. Key takeaways for parents of children with pediatric ependymoma include understanding the symptoms and early warning signs of ependymoma, working closely with your child’s healthcare team can help develop a treatment plan that is right for them, and accessing support networks and educational resources to help you and your child cope with the emotional and psychological effects of a cancer diagnosis. It is important to remember that as medical research continues to advance, new treatments and therapies may offer hope for improved outcomes in the future.

If a loved one has been diagnosed with Pediatric Ependymoma, it’s crucial to discuss all treatment options with your healthcare provider. If you have additional questions, you can contact our team. 

Click here for additional information about the ReSPECT Pediatric Brain Cancer Clinical Trial.

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