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Gold Ribbon Hero: Grace

Gold Ribbon Hero: Grace

Meet Grace – a sweet and spirited 9 year old and one of our Ambassadors for Childhood Cancer Awareness Month. Grace is a generous and giving individual with a passion to help others and brighten their days. She is strong and courageous, even when things might not be easy.

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Grace is a typical 9-year-old, she loves gymnastics, softball, riding her bike, reading, painting and swimming. She also loves playing with her friends. This little warrior exudes good vibes and positive energy 24/7. For every birthday, Grace requested that in lieu of gifts, money should be donated to St. Jude Children’s Research Hospital. Little did she know, she might be the recipient of services from them in the future.grace2

Aubrey, Grace’s mom, said “Grace was always the tallest in her class, and then one day she wasn’t. She was drinking a lot of water, so it warranted a closer look. A proactive pediatrician and endocrinologist ordered a brain MRI which resulted in the detection of a mass around Grace’s pituitary gland dangerously close to her optic nerves.”  The initial tumor was detected on April 9, 2018 and over the next few weeks, Grace endured scans at the neurosurgeons office. After discussing things with the doctor at length, Grace decided she wanted to be a doctor. She had more tests, scans and plenty of needles and laid still for each of them. She got through all of the tests by listening to songs on her playlist and smiling as best she could. Grace even comforted her queasy mother and support team.

Grace was diagnosed with Germinoma brain cancer, a germ cell brain tumor, on May 2, 2018. Her aggressive treatment began on May 9, 2018 and she just finished the radiation portion of treatment. As of today, there is no evidence of a tumor and Grace will undergo blood tests, MRIs and spinal taps for the next few months to monitor the success of the chemo.

graceandmomGrace loves to be crafty; she made a sign for the children to sign and date which says “Last Day of Chemo.” Throughout her treatment, she decided to paint pictures to brighten the nurses and the children’s days. When losing her hair became a reality, Grace decided to throw a party and shave her head. Grace’s brother and her best friend joined her in shaving their heads as well.

According to Grace’s mom, “The hardest thing in the process has been missing school. She is one of ‘those kids’ that is passionate about being in school. She video conferences in as much as she can and keeps up on all her projects, even the ones for her future’s gifted program. She rallied a huge team for a fundraiser walk for her hospital and came in second place overall for fundraising. She was the first place for largest team.”

Grace is determined to help people and is currently making a plan of how she will continue helping other kids with cancer. She enjoys tagrace1lking to people about this part of her journey and is focused on helping others. Grace plans on learning more about oncology. She is excited for the future and can’t wait for her hair to start growing back!

*Special thanks to Barbara Zobian and the Candlelighters NYC*

 

Causes, Risk Factors, and Prevention of Childhood Brain Tumor Cancer

Why do some children develop brain tumors?

Why do some children develop brain tumorsAny time a child is diagnosed with a brain tumor or other type of cancer, the most obvious question many parents ask is “why”. What caused this child to develop a brain tumor? Unfortunately, there is no easy answer to this question. Scientists now believe that the vast majority of brain tumors in children are the result of random gene mutations but have no satisfying answer as to why a particular gene mutation occurred or why it led to the growth of a brain tumor.

Whether benign or malignant, a tumor grows when certain cells grow, divide, and replicate more quickly than normal cells and/or they do not die when they are aged or damaged. These abnormal cells then begin to build up in the brain, forming clumps or a mass, and eventually growing large enough to press on or cause damage to the healthy brain tissue.

So why do some cells grow, function, and die normally, while others grow abnormally and develop into a brain tumor? Scientists currently believe that these abnormal cells are the result of mutations (random changes) within the DNA in each cell. Mutations in oncogenes inhibit when cells grow and divide properly, while mutations in tumor suppressor genes prevent cells from slowing their rate of replication and prevent them from dying at the proper time. Because mutations are a natural part of the lifecycle of our cells—occurring frequently as our cells grow and divide over time—preventing or predicting these mutations is currently impossible.

What are the risk factors for brain tumors in children?

A “risk factor” is anything that increases a child’s risk of developing a brain tumor. As stated above, scientists believe that the vast majority of cases of childhood brain tumors are caused by random gene mutations. Gene mutations are a natural part of human biology and usually do not have a specific or identifiable cause. Therefore, there are very few known risk factors linked to the development of brain tumors in children, with two notable exceptions. Those are:

  • Radiation exposure: Exposure to large amounts of radiation has been linked to several types of cancer, including brain tumors in children. While low-level radiation exposure is an accepted aspect of today’s medical care (x-rays, for instance, for dental treatment or to diagnose a broken bone), the medical community goes to great lengths to protect children from high dosages of radiation exposure.

However, radiation therapy has proven to be an effective tool when fighting some types of cancer. While most oncologists will limit or avoid altogether the use of radiation when treating very young children, in some cases, the benefits of treating the immediate threat posed by cancer must be weighed against the potential risk of developing a brain tumor or other secondary cancer in the future.

  • Inherited genetic conditions: In a very small number of cases (less than 5%), children have an inherited genetic condition that might potentially increase the risk of developing a brain tumor. Although these conditions themselves are very, very rare, some have been linked to an elevated risk for brain tumors:
  • Neurofibromatosis type 1 (von Recklinghausen disease)
  • Neurofibromatosis type 2
  • Von Hippel-Lindau disease
  • Tuberous sclerosis
  • Gorlin syndrome (basal cell nevus syndrome)
  • Li-Fraumeni syndrome
  • Turcot syndrome
  • Hereditary retinoblastoma
  • Cowden syndrome
  • Rubinstein-Taybi syndrome

 

Can we do anything to prevent a brain tumor?

Unfortunately, all too many parents—after hearing that their child has been diagnosed with a brain tumor—feel an overwhelming sense of guilt. Many wonder whether this diagnosis is somehow their fault, or whether they might have been able to do something to prevent this diagnosis. However, any oncologist will assure these parents that there is absolutely nothing they could have done to prevent their child from developing a brain tumor. Brain tumors in children are not believed to be linked to any environmental factors or lifestyle choices (with the notable exception of radiation exposure noted above); instead, they are most likely the result of random and uncontrollable gene mutations.

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 www.acco.org , call 855.858.2226 or visit:

Childhood Brain Tumor Cancers – Detection and Diagnosis

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 www.acco.org , call 855.858.2226 or visit: