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After Treatment – Living as a survivor of Childhood Brain and spinal cord cancer

Tag Archives: Brain Cancer

Treating Brain and Spinal Cord Tumors

The brain and central nervous system control every aspect of our body, from its most basic functions such as breathing to significantly more complex functions such as movement and balance. The brain even controls personality and social interactions. So tumors located in the brain or spinal cord, whether they are benign or malignant, can significant impact how our body functions depending on where they grow and how much damage they inflict on healthy brain tissue. Survivorship issues for children with brain or spinal cord tumors often involves coping with symptoms stemming from the tumor itself, as well as from the treatment required to eliminate the tumor.

When discussing both short- and long-term side effects, it is important to understand the types of treatment options currently used to treat tumors in this very sensitive organ. The goal of any treatment plan is to remove the tumor from the body and if possible to prevent it from recurring, as well as to relieve any symptoms caused by the position and the growth of the tumor. In almost all cases, treatment for brain and spinal cord tumors will involve one or more of the following:

  • Surgery: whenever possible, surgery will be used to remove all or as much of the tumor as possible, while minimizing damage to healthy brain tissue
  • Radiation therapy: radiation may be used after surgery to kill any cancerous cells remaining after surgery, or as the main type of treatment if surgery is not appropriate
  • Chemotherapy: drug-based therapies are generally used to target aggressive, fast-growing tumors, to treat children under the age of 3, or for the treatment of certain cancers that have been proven to respond well to chemotherapy

In most cases, especially involving malignant tumors, treatment will involve some combination of all three. The goal is to develop a treatment plan that is unique to your child and to give them the best chance of long-term survival while minimizing the risk of both short- and long-term side effects.

Living as a Survivor of Childhood Brain or Spinal Cord Cancer: Physical Side Effects

Some side effects may result from the growth of the tumor itself within the brain or spinal cord, while other side effects may stem from inescapable damage to the brain during treatment. A child’s brain is growing and developing much more quickly and actively than an adult’s; on the one hand, this can mean that a child’s brain may be able to compensate for damaged tissue, but on the other hand, a child’s brain is also more sensitive to radiation and other forms of treatment so may be more easily damaged.

Some of the most common physical side effects of a brain tumor include:

  • Problems with physical coordination, muscle strength, and balance
  • Issues with speech and communication
  • Vision and/or hearing concerns
  • General intelligence, memory, and learning skills
  • Delayed growth and/or sexual maturation

Once treatment is complete, your child’s oncology team will work together to assess any possible damage to the brain and/or spinal cord and may recommend specific follow-up treatment(s) to cope with these or other side effects. Coping with physical side effects will often involve a range of different specialists, including physical and occupational therapists, ophthalmologists, audiologists, psychologists, and learning specialists.

A key part of successfully treating both short- and long-term side effects is maintaining excellent records of your child’s cancer treatment. These records will help new doctors, both in childhood and into adulthood, understand the entirety of your child’s medical history and make it easier for them to develop a comprehensive treatment plan for future medical concerns. Key pieces of information to compile include:

  • Pathology reports from all biopsies and surgeries
  • Results of all imaging tests (stored digitally)
  • Operative reports summarizing all surgeries
  • Discharge summaries for all hospital stays
  • A comprehensive list of the final doses of all chemotherapy and other drugs
  • Summaries of the doses and fields of all radiation therapies

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 and Spinal Cord Tumors in Children: Some Introductory Basics

i-2j4LjZrOn average in the United States each year, there are more than 4,000 new diagnoses of childhood brain and spinal cord tumors, making this the second most common type of childhood cancer after leukemia. And on average, the five-year survival rate (meaning the number of children who survive more than five years after the end of treatment) across all types of brain and spinal cord tumors (including both malignant and benign) is very good: 3 out of 4 children diagnosed with a brain tumor will survive longer than five years.

In reality, however, discussing “brain and spinal cord tumors” in a general sense is very nearly impossible. There are a wide variety of different types of brain and spinal cord tumors, each of which is very rare, requires a unique treatment approach, and has its own set of key statistics based on a fairly limited set of data (due to the rarity of each type of tumor). Therefore, while understanding the basics of brain and spinal cord tumors is important, your child’s oncology team will be able to discuss your child’s specific diagnosis, treatment approach, and long-term prognosis based on the details of his or her unique case.

Some of the most common types of brain and spinal cord tumors in children include:

  • Gliomas: About 50% of all brain and spinal cord tumors in children fall into this broad category, which covers any tumor that begins in the glial cells. The most common gliomas include glioblastoma and other types of astrocytomas, brain stem gliomas (10-20% of all brain tumors) including diffuse intrinsic pontine gliomas (DIPGs), ependymomas (about 5% of all brain and spinal cord tumors in children), and oligodendrocytes (about 1% of all brain and spinal cord tumors).
  • Medulloblastomas: Medulloblastoma is the most common and most easily treated tumor within a broad classification known as primitive neuroectodermal tumors (PNETs). PNETs develop from immature neuroectodermal cells in the central nervous system and account for about 20% of all brain and spinal cord tumors in children. Other types of tumors within this classification include pineoblastomas, medulloepitheliomas, ependymoblastomas, and neuroblastomas that develop in the brain or spinal column.

Other, rarer forms of brain and spinal cord tumors in children include:

  • Choroid plexus tumors
  • Craniopharyngiomas
  • Mixed glial and neuronal tumors
  • Germ cell tumors
  • Spinal cord tumors

About Brain and Spinal Cord Tumors: Key Prognosis Statistics

Due to the rarity with which each specific type of brain or spinal cord tumor is diagnosed, we simply do not have enough information to compile accurate statistics on five-year survival rates for every single type of brain or spinal cord tumor. Moreover, thanks to the speed at which medical science is advancing, treatment options for many different types of brain and spinal cord tumors have improved dramatically over the past few decades, making older statistics no longer relevant. So while we can provide general information on the most common types of brain tumors, based on information from the Central Brain Tumor Registry of the United States (covering children treated between 1995 and 2010), it is important to note that these statistics are general and can vary widely. Therefore, these statistics do not accurately represent the chances of long-term survival for any one specific child.

The percentages listed below refer to the 5-Year Survival Rate (the percentage of children who survive five years or more after treatment):

  • 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 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:

Treating Brain and Spinal Cord Tumors

life after brain cancerThe brain and central nervous system control every aspect of our body, from its most basic functions such as breathing to significantly more complex functions such as movement and balance. The brain even controls personality and social interactions. So tumors located in the brain or spinal cord, whether they are benign or malignant, can significant impact how our body functions depending on where they grow and how much damage they inflict on healthy brain tissue. Survivorship issues for children with brain or spinal cord tumors often involves coping with symptoms stemming from the tumor itself, as well as from the treatment required to eliminate the tumor.

When discussing both short- and long-term side effects, it is important to understand the types of treatment options currently used to treat tumors in this very sensitive organ. The goal of any treatment plan is to remove the tumor from the body and if possible to prevent it from recurring, as well as to relieve any symptoms caused by the position and the growth of the tumor. In almost all cases, treatment for brain and spinal cord tumors will involve one or more of the following:

  • Surgery: whenever possible, surgery will be used to remove all or as much of the tumor as possible, while minimizing damage to healthy brain tissue
  • Radiation therapy: radiation may be used after surgery to kill any cancerous cells remaining after surgery, or as the main type of treatment if surgery is not appropriate
  • Chemotherapy: drug-based therapies are generally used to target aggressive, fast-growing tumors, to treat children under the age of 3, or for the treatment of certain cancers that have been proven to respond well to chemotherapy

In most cases, especially involving malignant tumors, treatment will involve some combination of all three. The goal is to develop a treatment plan that is unique to your child and to give them the best chance of long-term survival while minimizing the risk of both short- and long-term side effects.

Living as a Survivor of Childhood Brain or Spinal Cord Cancer: Physical Side Effects

Some side effects may result from the growth of the tumor itself within the brain or spinal cord, while other side effects may stem from inescapable damage to the brain during treatment. A child’s brain is growing and developing much more quickly and actively than an adult’s; on the one hand, this can mean that a child’s brain may be able to compensate for damaged tissue, but on the other hand, a child’s brain is also more sensitive to radiation and other forms of treatment so may be more easily damaged.

Some of the most common physical side effects of a brain tumor include:

  • Problems with physical coordination, muscle strength, and balance
  • Issues with speech and communication
  • Vision and/or hearing concerns
  • General intelligence, memory, and learning skills
  • Delayed growth and/or sexual maturation

Once treatment is complete, your child’s oncology team will work together to assess any possible damage to the brain and/or spinal cord and may recommend specific follow-up treatment(s) to cope with these or other side effects. Coping with physical side effects will often involve a range of different specialists, including physical and occupational therapists, ophthalmologists, audiologists, psychologists, and learning specialists.

A key part of successfully treating both short- and long-term side effects is maintaining excellent records of your child’s cancer treatment. These records will help new doctors, both in childhood and into adulthood, understand the entirety of your child’s medical history and make it easier for them to develop a comprehensive treatment plan for future medical concerns. Key pieces of information to compile include:

  • Pathology reports from all biopsies and surgeries
  • Results of all imaging tests (stored digitally)
  • Operative reports summarizing all surgeries
  • Discharge summaries for all hospital stays
  • A comprehensive list of the final doses of all chemotherapy and other drugs
  • Summaries of the doses and fields of all radiation therapies

 

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:

Matthew’s Story

Matthew Donald: a baby named for two amazing people in his parents’ lives, both of whom were taken by cancer. And Matthew Donald—“Miracle Matthew”, as his parents and doctors like to call him—is himself a true childhood cancer warrior, having gone through more in four short years than most people see in a lifetime. But Matthew was born a fighter into a family of fighters, showing us through it all the true meaning of courage, spirit, and joy.

Matthew’s cancer journey began even before he was born. Two weeks before his birth, his parents learned that he had fluid in his brain. The tumor was discovered at just four days old, during a surgical procedure to drain the fluid. Doctors removed a portion of the tumor, as well as the fluid, but the diagnosis was stark: Matthew had an aggressive type of brain cancer, a grade 4 neuronal glioma, consuming more than 40% of his brain, most of the right side. Matthew’s parents faced a grim choice: take Matthew home with a hospice team and make him as comfortable as possible or immediately schedule aggressive treatment.


13238880_1149488918471576_1685240456951627950_n
Neuronal glioma is an extremely rare type of brain cancer, most often diagnosed in adults and appearing in less than five births per year in the United States. Gliomas grow in the connective tissue of the brain that holds the neurons in place and enables them to function. Neuronal glioma is usually fatal in children; in fact, no child has survived more than five or six years after being born with this type of brain cancer. According to the National Brain Tumor Society, not a single drug has been developed and approved specifically for the treatment of malignant pediatric brain tumors. The outlook for Matthew was not good.

Matthew’s parents, however, refused to give up on him. They chose to pursue chemotherapy and surgery to fight the tumor spreading through Matthew’s brain. After the first surgery, Matthew had five additional surgeries and six rounds of chemotherapy. He spent the first 13 months of his life in the hospital. And because of the damage to his brain from the toxic treatment protocols, the surgeries, and the tumor itself, doctors warned Matthew’s parents that even if he lived, he may never walk, talk, hear, or “live a normal life”.

Miracle Matthew

Yet Matthew showed his doctors and his parents that miracles do happen! His tumor responded to the aggressive treatment, and in late 2015, Matthew “graduated” into a survivorship program at the hospital, where he will continue to receive medical treatment and frequent monitoring and testing.

13394126_1158909640862837_4223109359553262398_nToday, Matthew embraces his life with the same courage, spirit, and determination with which he fought cancer. Now 4½ years old, Matthew has begun walking independently; not bad, as his mother notes, for a child who spent the first 18 months of his life confined to bed! He can say a handful of words and continues to build strength in his left side, which was left weakened by the tumor consuming the right hemisphere of his brain. He goes to school where he receives specialized therapy, and sees specialists outside of school three times per week for speech, occupational, and physical therapy.

Still, the tumor and the aggressive treatment have had significant side effects for which Matthew receives constant medical care. He suffers from seizures, a common side effect of any brain surgery, and will likely be on anti-seizure medication for the rest of his life. His hearing has been impacted and he wears hearing aids in both ears. The veins in both of his arms have been severely damaged from so many IV lines and blood tests, making even routine tests and scans problematic. Still, as Matthew’s mother notes, “his happy spirit has never changed!”

Thank you, Miracle Matthew, for showing us what it truly means to be a childhood cancer warrior!

For more information about Matthew and to follow his amazing story, we encourage you to view his family’s YouTube video: http://youtu.be/WZL_7pj4Nvg and visit their Facebook page at:

https://www.facebook.com/Matthew-Donald-Erickson-208905462529931/?fref=ts

 

About the American Childhood Cancer Organization

The 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, the ACCO is the sole US member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, the ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer.  And most importantly, the 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 on our resources or information on how to obtain our resources free of charge, please visit our website at www.acco.org.

For more information about the American Childhood Cancer Organization and how we can help, call 855.858.2226 or visit:

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