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What is the expected life span of Childhood Brain Tumor Cancer?

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Brain tumors

“What is my child’s prognosis?” This seemingly simple but critical question is often among the first that parents will ask their child’s oncologist after hearing that their child has been diagnosed with cancer. Yet while the question may be simple, answering it can be extremely complicated. In general terms, oncologists can provide statistics relating to 5-year survival rates for many different types of brain tumors in children. These general statistics, however, cannot predict an outcome for any one child. Each child’s individual prognosis will depend on the unique circumstances of their tumor and its response to treatment.

What is a 5-year survival rate and why doesn’t it tell the whole story? The 5-year survival rate refers to the percentage of children who live at least five years after they have been diagnosed with a brain tumor. As a simple statistic, it can provide some basic information about our ability to treat many different types of brain tumors. However, as with all “simple statistics”, it has three significant limitations:

  • It only takes into account children who were treated at least five years ago. It does not take into account significant improvements in today’s treatment options.
  • It can indicate prognosis for a particular class of brain tumors, but does not show differences in prognosis rates for specific tumor types.
  • It does not account for each child’s unique diagnosis and key prognosis factors so, as noted above, it cannot predict an outcome for any one child.

IMG_2106What are the key prognosis factors for childhood brain tumors?

As noted above, while five-year survival rates can be useful in general terms, each child’s prognosis will depend heavily on a unique assessment of her or her prognosis factors. These factors will impact the treatment approach and help determine your child’s potential for long-term survivorship.

Key prognosis factors for childhood brain tumors include:

  • The type of tumor
  • The grade of the tumor, or how quickly it is likely to grow
  • The size of the tumor
  • The location of the tumor
  • Whether the tumor can be removed completely with surgery (if at all)
  • Whether the tumorous cells have particular gene mutations
  • Whether the tumor has spread to other parts of the brain or spinal cord via the cerebrospinal fluid
  • Whether tumorous cells have spread beyond the central nervous system
  • The child’s age
  • The child’s functional abilities as impacted by the brain tumor

Unlike many other forms of cancer, brain tumors rarely spread to areas of the body outside the central nervous system. Instead, brain tumors can be life-threatening because of the damage they can inflict on the delicate and highly critical tissues of the brain and spinal cord. For this reason, doctors do not use two prognosis factors commonly used when discussing other types of childhood cancers: benign v. malignant and “staging”.

Five-Year Survival Rates for Common Types of Brain Tumors in Children

Based on information from the Central Brain Tumor Registry of the United States (covering children treated between 1995 and 2010), we can provide five-year survival rates for some of the most common types of brain tumors diagnosed in children. As noted above, however, it is important to remember that these statistics do not accurately represent the chances of long-term survival for any one specific child.

  • Philocytic astrocytoma: 95%
  • Oligodendroglioma: 90% – 95%
  • Fibrillary (diffuse) astrocytoma: 80% – 85%
  • Ependymoma (including anaplastic ependymoma: 75%
  • PNETs (including medullablastoma and pineoblastoma): 60% – 65%
  • Anaplastic astrocytoma: 30%
  • Glioblastoma: 20%

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:

Brain Tumors

What are the Signs and Symptoms of Brain Tumors in ChildrenWhen classed together in a single grouping, cancers in the brain and spinal cord are the second most common type of childhood cancer after leukemia. Brain and spinal cord tumors account for about 25% of all childhood cancer diagnoses, with more than 4,000 new cases diagnosed every year in the United States. In reality, however, it can be difficult to discuss “brain tumors” in general terms: oncologists recognize at least nine different sub-classifications of brain tumors in children, such as brain stem gliomas and ependymomas for example, with still more sub-groupings within those broad classifications.

Moreover, it is important to note at the outset that a variety of factors can impact both the initial indicators of the tumor’s presence, as well as the appropriate course of treatment, factors such as: the tumor’s location in the brain, the size of the tumor, how quickly the tumor is growing, and for treatment purposes, whether the tumor can be removed surgically. Interestingly enough, the one distinction that oncologists do not make regarding brain tumors in children is whether the tumor is benign (non-cancerous) or malignant (cancerous). Because brain tumors occur in such a vital and sensitive area of the body, both types of tumors can be life-threatening.

Keeping those caveats in mind, what are the signs and symptoms of brain tumors in children? In many children, symptoms begin to show slowly over time as the tumor grows and begins to press on specific areas of the brain. This increase in intracranial pressure can lead to general health concerns such as:

  • Headaches
  • Nausea and vomiting
  • Crossed eyes and/or blurred vision
  • Balance problems
  • Behavioral changes
  • Drowsiness, potentially leading to coma

Of course, many of these concerns are symptoms of common childhood illness and may not be related to a tumor. However, should these symptoms persist and/or worsen over time, your pediatrician may recommend a visit to a neurologist or oncologist to conduct diagnostic testing.

One potential symptom—seizures—can develop both rapidly and unexpectedly. Should your child begin experiencing seizures, it is important to seek medical help immediately from a neurologist who can help determine if a tumor is causing the seizures.

In very young children, some additional symptoms of a brain tumor may include:

  • Loss of appetite
  • Irritability
  • Developmental delays or a decline in intellectual and/or physical abilities
  • An increase in head size, especially if accompanied by unusual cranial bulging

In older children, guardians and teachers may notice unusual fatigue, personality changes, or a decline in performance or attitude at school.

In addition to these generalized symptoms, children may exhibit more specific symptoms relating to the location of the tumor within the brain. For instance:

  • Cerebrum (large, outer part of the brain): may cause weakness or numbness in a specific part of the body, usually only on one side; speech or comprehension problems; concerns about thinking, personality, and language skills; issues with vision.
  • Cerebellum: may cause problems with walking or other routine bodily functions
  • Basal ganglia: may cause unusual or abnormal body positions or movements
  • Cranial nerves (not located in the cerebrum): may cause loss of hearing, problems with balance, weakness of facial muscles, or trouble swallowing

Again, it is important to note that brain tumors in children are extremely rare and even if you notice your child exhibiting one or more of these symptoms, it does not necessarily mean that your child has a brain tumor. These symptoms can be caused by a wide range of different medical issues. However, it is important that you speak to your pediatrician about your concerns. He or she will refer you to the appropriate specialist in order to ensure that your child gets an accurate diagnosis and treatment as quickly as possible.

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 ACCO, or to order resources for you or your child, please visit our website at www.acco.org.

 

 

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:

What causes brain and spinal cord tumors in children?

06172016 (3)Generally speaking, “cancer” is a broad name for a condition in which cells in a particular part of the body begin to malfunction. They begin to grow, divide, and replicate more quickly than normal cells, and/or they do not die as normal when they are worn out or damaged. When these abnormal, or “cancerous”, cells originate in the brain or the spinal cord, they usually form a clump or a mass known as a tumor. As the cancerous cells continue to replicate, the tumor grows until it begins to cause damage to the brain and/or the spinal cord.

Scientists are still trying to learn exactly why some cells grow, function, and die normally, while others grow abnormally and develop into a brain or spinal cord tumor. Brain and spinal cord tumors are most likely caused by mutations (random changes) in the DNA within each cell (our DNA provides instructions governing the function of each cell in our body, and ultimately how our body looks and functions as a whole). Specifically, scientists believe that mutations to two specific types of genes may be the ultimate cause of brain and spinal cord tumors in children: oncogenes control when cells grow and divide and tumor suppressor genes slow down cell division and instruct cells to die at the proper time. Whether inherited from parents or spontaneous and random, mutations to these particular genes may cause cells to malfunction and ultimately become cancerous.

Ultimately, however, scientists do not know why these mutations occur, especially in children. While lifestyle choices such as smoking can cause genetic mutations (and thus cancer) in adults, there are no known lifestyle risks associated with childhood brain and spinal cord tumors in children. Unfortunately, the genetic mutations at the root of the tumor growth are simply random changes that cannot be predicted or prevented.

Are there risk factors for brain and spinal cord tumors in children?

A “risk factor” is anything that increases an individual’s chances of developing a disease like a brain or spinal cord tumor. As noted above, most cases of brain and spinal cord tumors in children appear to be caused by random genetic mutations without a known cause. There are very few known risk factors associated with this type of childhood cancer. The only two well-established risk factors are radiation exposure and certain rare inherited genetic conditions.

  • Radiation exposure: exposure to large amounts of radiation is known to cause some types of cancer, including brain and spinal cord tumors in children. Now that this danger is known, the medical community takes active steps to avoid exposing the brain and central nervous system of children to radiation unless absolutely necessary. In some cases, radiation may be required as part of treatment for another type of cancer; in these cases, the benefits of treating one type of cancer must be weighed against the potential risk of developing a brain or spinal cord tumor in the future.
  • Inherited genetic conditions: in less than 5% of cases of childhood brain and spinal cord tumors, children have an inherited genetic condition that may increase their risk of developing a tumor. These genetic syndromes themselves are exceedingly rare, and may include:
  • Neurofibromatosis type 1 (von Recklinghausen disease)
  • Neurofibromatosis type 2
  • Tuberous sclerosis
  • Von Hippel-Lindau disease
  • Li-Fraumeni syndrome
  • Gorlin syndrome (basal cell nevus syndrome)
  • Turcot syndrome
  • Cowden syndrome
  • Hereditary retinoblastoma
  • Rubinstein-Taybi syndrome

Can the development of brain and spinal cord tumors in children be prevented?

Can the development of brain and/or spinal cord tumors in children be prevented? This is a question many parents will ask themselves upon receiving the terrible diagnosis that their child has a brain or spinal cord tumor. The answer is always “no”. There is no known way to prevent or protect against brain or spinal cord tumors, and absolutely nothing that parents or guardians could have done to prevent this disease.

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 ACCO, or to order resources for you or your child, please visit our website at www.acco.org.

 

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:

Introducing Super Logan, a Childhood Cancer Superhero!

logan

“Super Logan” in the Batman costume in the middle.

Today, we’d like to introduce you to Logan, affectionately called “Super Logan” by his friends and family for his amazing, courageous fight against tremendous odds. On December 7, Logan and his family joined Hope 4 Heroes (ACCO’s Colorado-based Founding Hope Fund) and Rock Bottom Downtown Denver to participate in a public PJammin’ event organized by Colorado Rock Bottom Restaurants to raise awareness about childhood cancer. We would like to thank Logan and his family for taking the time to participate in this important event and for sharing their childhood cancer story with us.

Logan’s Story: Aggressive Stage Three Ependemoma (Brain Tumor)

Logan’s childhood cancer story began one evening in June, 2014 when he collapsed unconscious while walking to his parents’ bedroom. The five-year-old was rushed immediately to the local ER, where a CT scan showed that a large mass in his brain had hemorrhaged, causing paralysis on his left side. Logan was airlifted to a larger hospital, where his parents received the worst possible news: Logan had an inoperable brain tumor located inside his brainstem and he was unlikely to survive more than three days.

Logan’s parents, however, refused to accept this devastating diagnosis. They immediately sought a second opinion from surgeons at the Barrow Institute, part of the Phoenix Children’s Hospital, who believed that at least part of the tumor could be removed. Although the outcome was by no means guaranteed, surgeons felt that surgery could at least extend Logan’s life and give him a fighting chance. With nothing to lose, Logan was transferred to Phoenix Children’s Hospital for an eight-hour surgery.

In fact, the outcome was better than anyone could have imagined: Logan’s golf-ball-sized tumor was located entirely outside of the brainstem and the surgical team was able to remove it all, in its entirety. Logan’s family described the surgeon’s reaction when he told them the news as “giddy”, not a word one usually hears in these circumstances. Logan went into surgery hoping only that his life might be extended a little bit, but miraculously, came out cancer-free!

A Second Chance at Life, but A Very Long Road to Recovery

Yet despite this amazing outcome, Logan’s cancer journey was far from over. Although the tumor was gone, for now, Logan was unable to perform many basic functions that we take for granted every day, including talking, walking, and even swallowing. Moreover, he faced the very real possibility that the tumor, a fast-growing Ependemoma, would return without x-ray radiation therapy, a treatment as aggressive as the tumor and linked to significant long-term health risks and even secondary cancers.

Again, Logan’s family sought other options. So-called “traditional” X-ray radiation therapy is mostly commonly used as a post-surgical treatment for brain tumors like Logan’s, but is linked to severe side effects and even secondary cancers, especially in young children whose brains are still growing and developing. Instead, Logan’s parents took Logan to San Diego to undergo 6½ weeks of proton radiation therapy. The goal of proton radiation therapy is to more precisely target any remaining cancer cells, using pencil-beam scanning that carefully builds up the dose layer by layer exactly at the site of the tumor, hopefully limiting damage to surrounding healthy cells.

Thus far, Logan’s amazing “miracle” continues: his regular scans, although the source of extreme “scanxiety” so common for families fighting childhood cancer, have all come back clear, indicating that Logan is still cancer-free. But Logan still faces many, many challenges; “the past two years have been one trial after the next for our brave boy,” recounts Logan’s mother. Logan spent months in rehab after the surgery overcoming the paralysis caused by the tumor, re-learning to walk, talk, and even swallow. One therapist stated that Logan was one of the hardest swallowing cases she had ever seen and that her team honestly wasn’t sure if he would ever be able to swallow normally again.

The proton therapy has left its mark as well. He has been diagnosed with a vascular condition called Moyamoya and has suffered multiple strokes, including one that temporarily left him without sight. In March 2016, Logan underwent a second serious brain surgery. Most recently, abnormal weight gain has been linked to the development of central sleep apnea, a condition in which the brain no longer automatically commands breathing during sleep. Each day seems to bring new challenges to Logan and his family, but as his mother proudly notes, Logan never gives up: “Logan will always have battles to fight but we will be here and ready to stand strong next to him. He is an incredible boy and we are so proud to call him our son.

Thank you, Logan, for sharing your inspirational story with us and for showing us that it really is possible to fight, for showing us the true face of childhood cancer. You are a true Superhero!

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:

Want To Read American Childhood Cancer Organization On Your Phone? Click the NoteStream logo: NoteStream

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Layla’s Story

Today, we would like to introduce you to Layla. Layla is a strong, courageous four-year-old who has been battling a rare, inoperable brain tumor for the past 15 months. Diagnosed at the age of two, Layla’s tumor has not responded to “traditional” chemotherapy-based treatments, and her family now faces the daunting prospect of attempting less well-known options, some well-researched and some still experimental, in the on-going search for an effective weapon against this devastating disease. In the meantime, they take every day as it comes, finding tools and resources to help Layla cope with the difficult days and sharing her smiles and giggles on the good ones. We hope you will join us in offering Layla and her family our support as they embark on this next stage of their cancer journey.

Juvenile Pilocytic Astrocytoma

20160908_132323Layla has Juvenile Pilocytic Astrocytoma, a rare brain tumor that grows in the supportive tissues of the brain known as astrocytes. In Layla’s case, the tumor is located on her brainstem, blocking the natural flow of cerebral spinal fluid. At the time of her initial MRI, the spinal fluid had begun to fill her brain causing headaches and mobility issues, and eventually leading to “life-threatening” pressure that required emergency surgery to drain the fluid and relieve the pressure.

Because of its location on the brain stem, oncologists could not surgically remove the tumor without risking Layla’s life. Another traditional tool in the fight against brain tumors—radiation—is not appropriate for children Layla’s age due to the extreme risk of severe brain damage. Still, the prognosis was hopeful: JPA is usually a benign, “low grade” tumor that Layla’s team felt would probably not grow. They placed a permanent shunt to enable the normal drainage of spinal fluid around the tumor, with the expectation that it would last for 10-15 years. Layla would receive an MRI every three months for the first year to monitor the tumor, with the frequency of MRIs decreasing over the years.

20161013_115549Unfortunately, the complications began almost immediately. First, Layla’s shunt over drained, causing massive bleeding. Two months later, the shunt failed to drain again, leading to more hydrocephalus. Another couple of months, another malfunction: Layla was back in the ICU for a failed shunt, hydrocephalus, and now bleeding as well. Each of these complications required emergency surgery to relieve the hydrocephalus, then additional surgeries to repair damaged tissue and replace the shunt.

20160908_134459Throughout this difficult period, routine scans of the tumor showed good news: as expected, the tumor was not growing. Yet once again, Layla’s family learned just how quickly bad news can follow good: just two weeks after a positive scan, another follow-up scan showed 25% growth in the size of the tumor. Layla immediately began chemotherapy through a clinical trial. Unfortunately, after three months of chemotherapy, it has now become clear that Layla’s tumor is not responding and she has been taken off the chemotherapy in order to avoid the potential for negative side effects.

Hero Beads and Port-a-Cat: “Life Changing” Resources for Layla and Her Family

img_9759As difficult and as devastating as this journey has been for Layla and her family, they have found much-needed help and support from friends and family, as well as tools and resources to help them cope. ACCO’s informational booklets have helped Layla’s parents navigate the incredibly difficult world of childhood cancer, while Layla loves Marvelous Marleigh, the only age-appropriate book Layla’s mother could find to help Layla understand what was happening to her. And perhaps most importantly, as her mother notes, “Cozy the Port-a-Cat was a life-changing therapy tool for her and her ACCO blanket is her most coveted comfort item.” Each time Layla visits the hospital, Cozy is treated like a patient, too, with his own regimen board just like Layla’s!

And Layla and her family have been able to document Layla’s journey with ACCO Hero Beads. Choosing a Hero Bead for every procedure gives Layla a sense of accomplishment and a feeling of ownership over her individual story; her Hero Beads provide a meaningful way to visually represent what she has gone through over the past 15 months. ACCO Hero Beads can be purchased individually or in bulk from our store; 100% of the proceeds continue to fund ACCO’s programs to help and support kids with cancer and their families! For more information about ACCO’s Hero Bead powerful program, we encourage you to visit our website at:  https://www.acco.org/hero-beads/.

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 ACCO, or to order resources for you or your child, please visit our website at www.acco.org.

 

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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:

Want To Read American Childhood Cancer Organization On Your Phone? Click the NoteStream logo: NoteStream