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Gold Ribbon Hero: Naomi

Tag Archives: Childhood Brain Tumors

Meet Naomi, a kind-hearted little girl who loves unicorns and helping people. Naomi is currently on treatment battling Pinealoblastoma, a subtype of a brain tumor and spinal cord tumor. grh naomi

Red flags started to arise after Naomi collapsed in school; she didn’t even know her name. Naomi visited the emergency room several times before doctors finally took a closer look. They found a mass in her pineal region and immediately sent her to Children’s in Cincinnati. On October 3rd, Naomi and her parents were given the diagnosis of stage four pineoblastoma with metastasis in the spine.  “We got the MRI results and they took us in a big room. It took my breath. I couldn’t believe it. All I wanted to do was go grab her and hold her. We were lost” her father, Kenneth, remembers.

The treatment plan for Naomi is rigorous consisting of 30 proton radiation treatments and six months of chemotherapy. October of 2019, Naomi had four brain surgeries and doctors told the family that if they got all of the cancer and it comes back, there is nothing they can do.

Naomi is a kind soul. While in the hospital, she bagged up her Halloween candy and passed it to the children that didn’t get to go trick or treating. She is working to start a teddy bear drive to donate to the hospital. She is currently undergoing chemotherapy for the next few months. Please help ACCO by sending her well wishes!

Follow Naomi’s story here:

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As a new partner member of the Council of State Governments, ACCO’s #WhyNotKids State Advocacy Initiative is highlighted in an article in Capitol Ideas detailing our leadership and solutions for overcoming the disparity between adult and #childhoodcancer research funding. Capitol Ideas is a magazine of CSG sharing ideas for model legislation and top priorities for states across the nation. Special thanks to CSG for featuring ACCO. Read the full magazine hereScreen Shot 2020-01-28 at 8.29.00 AM


About Childhood Brain Tumors

Childhood Brain Tumor Cancers Detection DiagnosisAfter leukemia, brain tumors (including spinal cord tumors) are the second-most common type of cancer in children, accounting for about 25% of all childhood cancer diagnoses. Brain tumors begin within the delicate and complicated tissues of the brain or the cerebrospinal fluid (as well as the spinal cord or central nervous system, as these tumors are usually classed with brain tumors in children). When dealing with brain tumors in children, oncologists rarely differentiate between benign (non-cancerous) or malignant (cancerous) tumors; all tumors in the brain can be life-threatening whether technically cancerous or not. Instead, oncologists usually focus on how fast the tumor is growing, how quickly or easily it may spread throughout the brain or spinal cord, and how easy the tumor is to remove completely.

Types of brain tumors “common” in children include:

  • Gliomas: a general term for a group of tumors that begin in the supporting cells of the brain. Gliomas account for about 50% of all brain and spinal cord tumors in children. Examples include astrocytomas, oligodendrogliomas, ependymomas, optic gliomas, and brain stem gliomas. Brain stem gliomas themselves account for about 10-20% of all brain tumors in children. Because they often grow diffusely throughout the brain stem, “diffuse midline gliomas” (such as diffuse intrinsic pontine gliomas, or DIPGs) remain very difficult to treat.
  • Embryonal tumors: accounting for about 10-20% of all brain tumors in children, embryonal tumors usually begin in the earliest forms of nerve cells and therefore are more common in younger children. The most common type is medulloblastoma, but other forms of embryonal tumors include medulloepithelioma, atypical teratoid/rhabdoid tumor, and embryonal tumor with multilayered rosettes.
  • Pineal tumors: these tumors begin in a small gland in the middle of the brain—the pineal gland—and are very difficult to treat. The most common type of pineal tumors are pineoblastomas.
  • Craniopharyngiomas: about 4% of all brain tumors in children are these slow-growing tumors which begin between the pituitary gland and the brain itself. Because they often press on the pituitary gland, the hypothalamus, and/or the optic nerves, they can be very difficult to remove without impacting the child’s vision and/or hormone balance.
  • Mixed glial and neuronal tumors: these types of tumors, including dysembryoplastic neuroepithelial tumors and gangliogliomas, are generally slow-growing and have a fairly good prognosis when treated with surgery and potentially radiation.

Childhood Brain Tumors: Detection and Diagnosis

Unfortunately, as with all childhood cancers, there is no way to “detect” a brain tumor without formal diagnostic testing. In most cases, detection and diagnosis happens only after parents, guardians, teachers, or others close to the child start observing unusual medical symptoms such as frequent headaches, nausea and vomiting, vision problems, balance problems, or seizures. Because many of these symptoms are commonplace, a pediatrician may only suspect a tumor if symptoms continue over time or worsen, or in the case of seizures appear very suddenly.

Should your child’s pediatrician suspect the presence of a brain tumor, he or she will recommend a visit to a specialist, who will conduct a series of diagnostic tests to determine if a brain tumor is present. The first diagnostic test is almost always an imaging test, usually an MRI. Using a combination of radio waves and strong magnets, an MRI can create a series of detailed images of the brain without involving radiation (which is extremely damaging to the delicate brain tissue of children, especially young children).

While an MRI or other imaging test can indicate the presence of a tumor or other abnormality, a final diagnosis usually must be made through a biopsy. A biopsy involves removing some or all of the tumorous tissue and examining it under a microscope. In some cases, a biopsy may be done simultaneously with surgery to remove the entire tumor, or it may involving only removing a piece in order to determine the appropriate course of treatment. However, in some cases, the tumor may be located in such a sensitive or difficult-to-reach area of the brain, that a physical biopsy is not possible; in these cases, diagnosis must be made on the results of imaging tests.

Once the biopsy has confirmed the presence of tumor and identified its type and grade, your child’s oncology team will work with you to determine the best course of treatment for your child.

More about Childhood Brain Tumor Cancers:

Learn More About the Different Types of Childhood Cancers:

About American Childhood Cancer Organization

American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, ACCO is the sole U.S. member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer.  And most importantly, ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.


For additional information about childhood cancer or on the ACCO, or to order resources for you or your child, please visit our website at , call 855.858.2226 or visit:

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