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Life as a Survivor of a Childhood Brain Tumor or Spinal Cord Tumor

Life as a Survivor of a Childhood Brain Tumor or Spinal Cord Tumor

After Treatment 

 

IMG_2186The central nervous system—including the brain and the spinal cord—grows and develops very quickly during childhood. This rapid rate of growth and development can make treating a brain and/or spinal cord tumor in children especially complicated for several reasons. First, the growth of the tumor can more easily damage the rapidly-changing tissues of the central nervous system (CNS). Second, the tissues of the CNS are extremely sensitive to the potentially damaging impact of chemotherapy, radiation, and other tools required to eliminate the tumor. These two issues are especially concerning when discussing survivorship issues for childhood brain and spinal cord tumors, and may have repercussions well into adulthood.

Generally speaking, most parents and guardians of children with a brain or spinal cord tumor have two main questions as they begin to look at their child’s life as a childhood cancer survivor:

  • Will the tumor return?
  • How do we cope with the effects of the tumor and its treatment?

Will the Brain Tumor Return: Developing A Survivorship Care Plan

Once your child’s treatment is complete and your child has been declared “cancer free”, most families are eager to return to “normal life”. Yet this sense of well-being and even excitement can be undermined by concerns about whether the tumor will return. The best way to alleviate these concerns—and enable yourself to enjoy a cancer-free life with your family—is to develop A Survivorship Care Plan. This Care Plan will carefully detail all the necessary follow-up scans and tests needed to monitor your child for any possible return of the tumor, as well as detect and manage potential late effects.

Although many families note an increased level of anxiety around follow-up visits, it is important to stick to the schedule of follow-up visits and exams as dictated by your child’s oncology team. These visits will likely include imaging tests such as CT scans or MRIs, physical exams, blood work and other tests to monitor your child’s short- and long-term recovery and watch closely for signs that the tumor may be re-growing. Your child’s specific schedule of follow-up testing will depend heavily on the type and location of the tumor and the type and duration of treatment; for instance, children who underwent radiation may require routine scans and follow-up visits for many years after treatment because of the elevated risk for secondary cancers.

Coping with the Effects of the Tumor and Its Treatment

Both the tumor and the treatment required to fight the tumor can have significant physical, emotional, and mental side effects, depending on the type of tumor and where, and how big, it grew before treatment. Some of these side effects may be very obvious, some may be much more subtle; some side effects may appear immediately, while others may not occur until years after treatment. Once your child has been declared cancer-free, your medical team will work together to determine the extent of damage to the brain and central nervous system and to analyze the potential effects of that damage.

Coping with the potential side effects from a brain or spinal cord tumor will likely fall outside the qualifications of your child’s oncologist and require the services of one or more specialists who can help mitigate and hopefully overcome any damage caused by the tumor and its treatment. Examples of specialists include:

  • Neurologist: A specialist in the central nervous system who can help identify and manage side effects relating to physical coordination, muscle strength, and seizures.
  • Ophthalmologist: A specialist in eye problems for handling any issues relating to vision.
  • Audiologist: A specialist who can address any issues relating to hearing.
  • A speech therapist: A speech therapist can address any issues your child may be experiencing with talking and communicating.
  • Physical and/or occupational therapists: Experts who can provide physical therapy to overcome muscle weakness, paralysis, or difficulty walking, balancing, and other movement-related concerns.
  • Psychiatrist or psychologist: A mental-health professional can be extremely helpful in diagnosing and documenting developmental concerns, especially relating to general intelligence, speech and hearing, memory, learning skills, and special educational needs.
  • Endocrinologist: An expert in hormone disorders who can help side effects relating to growth, hormone imbalances, and future reproductive issues. This type of specialist will be especially important for children with a tumor in or near the brain stem (at the base of the brain) or near the pituitary gland.

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:

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

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:

What are the Signs and Symptoms of Brain Tumors in Children?

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:

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.

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.

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:

Gold Ribbon Hero – Pedro

PedroMeet Pedro, a 5-year-old warrior turning 6 this December. Pedro is one of three children in the Curiel family and is suffering from T Cell Acute Lymphoblastic leukemia (ALL). He is receiving delayed intensification treatments in California with his mom and siblings by his side.

“The past seven months have been the most aggressive chemo then he will go to maintenance where every other week he will receive chemo and eventually getting oral chemo which is not as intense,” his mom, Vilma notes. Vilma said that he’s had muscular stiffness from the new chemo which made him unable to walk and he did not want to get out of bed.  “I think this is the most scary part of treatment. After 24 hours he started limping and getting back to his usual routine.”

pedro 2When he’s not receiving treatment, he is found drawing treasure maps around the house. Vilma said that he loves to draw these maps and hide his “treasure” and have his two brothers go find it! He started homeschooling in August, and he can now read a full sentence. He is expected to return to school after flu season.  

Pedro is currently in remission and maintenance will continue for the next three years.  

 

Golden Ribbon Hero: Beckham

Currently being treated for Stage 4 Neuroblastoma

Beckham_022Meet Beckham, one of our ambassadors for the month of September. He is a goofy 8 year old currently being treated for Stage 4 Neuroblastoma at Memorial Sloan Kettering in New York City.  Beckham was diagnosed on September 11, 2013 at the age of 3. A few weeks prior to his diagnosis, Beckham was playing with his sister and they banged their heads together. This resulted in Beckham’s black eyes.  His mom remembers looking at pictures from that time and seeing his eyes starting to darken.

“I called the doctor and they said to watch it and call if things worsened. They went down and then started to darken. I ended up taking him in to his pediatrician and they drew labs. Later that day I got a call that Beckham’s labs were abnormal and that we had an appointment with oncology up at Primary Children’s Hospital in Salt Lake City,” his mom recalls.

Beckham_014At first, doctors didn’t think Beckham had cancer, they went through many diagnoses, everything from mono to anemia. The doctors were not convinced and decided to do a bone marrow biopsy which revealed that Beckham had tumors throughout his body and bone marrow.

beckhamTreatment was aggressive and as a result Beckham started chemotherapy. The doctors performed a resection of the main tumor and radiation to his skull in Utah which resulted in soft tissue tumors and bone marrow clearing well but the tumors in his bones had hardly changed. Beckham’s mom recalls going onto a Facebook group for Neuroblastoma and was urged to take him for a second opinion at Memorial Sloan Kettering. February 2014 was the first trip to NYC where Beckham received MIBG therapy, NK cell therapy, radiation, 3f8 antibioties, cryotherapy surgery, numerous rounds of chemotherapy and surgery to remove lymph nodes in his upper right underarm and chest.

Beckham_048Beckham has had two central lines and is on his third port. “He has endured four relapses, the most recent being March of 2018 and his doctors say he is a miracle boy.”

Fortunately, his latest scans show no evidence of disease. He is currently in treatment for an alk mutation which was found in his past two surgeries.  Beckham has a lot of personality and loves to make people laugh – we are looking forward to many laughs with Beckham!

Beckham is one strong little boy and an example of true perseverance. Beckham expresses to his mom that he is never giving up and his cancer is going down!

 

*Special thanks to our Candlelighters NYC Affiliate and Barbara Zobian*

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Golden Ribbon Hero – Braeden

Brae 1Meet Braeden or “Brae” as his mom lovingly calls him. He’s a three year old,  fun-loving “ladies man” who is wise beyond his years. Brae’s mom, Kendra noticed in January of 2018 that he was whining a lot. She took him to get checked out several times and after being told he had pneumonia, the flu and even being tested for having swallowed a toy, doctors decided to do a biopsy on his back. Doctors took a sample of the mass they found in his lungs and the diagnosis was clear. “On May 5, 2018, Brae was diagnosed with AML leukemia with a genetic mutation of monosomy 7. We just found out about the monosomy 7. Basically that means that Brae has 45 chromosomes instead of 46 like everyone else.”

Kendra was faced with a tough decision when it came to Brae’s treatment plan; get a bone marrow transplant and face three rounds of chemo with a 30% chance of relapse, or five rounds of chemo with a 60% chance of relapse. Kendra ultimately decided against the transplant and is happy to report that after Brae’s first round of chemo, his bulky tumor is gone. Doctors have continued to treat Brae with four more chemo rounds.

Brae 2Fortunately, Braeden is facing treatment like a little soldier; the only side effect he has experienced was hair loss, which he doesn’t seem to mind. Kendra notes that everytime he goes into the hospital, the nurses fight to work with him and that he charms them. She said when Brae is at home, he loves to watch tv with his big brother and play outside. He’s particularly interested in art and loves to paint. When he goes to the hospital you can usually find him in the art room playing with the popsicle sticks and paint.

He mom happily informed us that he is currently ‘doing great’ after his fourth round of chemo. Through it all, Braeden is a positive and happy three year old.

American Childhood Cancer Organization poses the question ‘Why Not Kids?’

New initiative seeks to address the disparity between state budget allocations for adult cancer research and pediatric cancer

FOR IMMEDIATE RELEASE – September 20, 2018 – Washington, D.C.

Childhood cancer star actThe American Childhood Cancer Organization (ACCO) announced today its Why Not Kids state-level advocacy campaign, a new initiative based on successful efforts in Kentucky, that will focus on working with state governments to close the gap between budget allocations that go towards adult and childhood cancer research. ACCO will strategically implement Why Not Kids in pilot sites to advocate for policies and funding in recognition that children are not simply small adults and adult cancer treatments cannot simply be dosed down to effectively cure kids.

How urgent is this call to action? “Childhood cancer is the leading cause of death by disease in children in the United States,” said Ruth Hoffman, ACCO’s Chief Executive Officer. “The majority of children with cancer continue to be treated by drugs that were developed in the 1950s, ‘60s and ’70s. In fact, there’s been just 3 new drugs approved by the FDA in the last 20 years to specifically treat childhood cancer, compared to the more than 185 new drugs approved to treat adult cancer types over the same time period. Working towards increasing childhood cancer research through state-based budget funding can play a significant role in addressing this disparity in access to new cancer treatments.”

This disparity became very personal to ACCO Director of Government Relations and External Affairs, Jamie Ennis Bloyd, when her five-year-old son was diagnosed with aggressive stage 4 lymphoma and leukemia during the Kentucky legislative session in March of 2014. A lobbyist at the time, Jamie quickly realized the gap in state-level engagement and funding for childhood cancer. Working with state legislative commission staff, she discovered in the last 3 biennial state budgets over $15 million dollars had been allocated to adult cancer research, causing her to wonder, “if state funds have been allocated to adult cancer research – why not kids”? She soon learned no other state in the country had specifically invested in childhood cancer research either and Why Not Kids was born.

In the 2018 Kentucky legislative session Governor Matt Bevin and the Kentucky General Assembly recognized this urgent need and set a national precedent for state engagement in the fight against childhood cancer by appropriating first time funding of $5 million dollars for collaborative childhood cancer research efforts at the state’s two children’s oncology group hospitals. Already this new funding has resulted in the revelation of a cluster of a 40-county area in Kentucky in which children have an 87% higher incidence of pediatric brain tumors than what would be expected. Pediatric brain tumors are now the leading cause of death for children diagnosed with cancer in America.  

Other projects funded in Kentucky through the Why Not Kids movement include drug development for molecularly targeted therapies in Ewing’s sarcoma; trials for a new methodology for less invasive and earlier detection of relapsed Acute Lymphoblastic Leukemia; investigation into new biomarkers for earlier identification of neurocognitive impact of chemotherapy; and expansion of basic science and clinical research utilizing CAR-T immunotherapy in Acute Myeloid Leukemia, neuroblastoma and pediatric brain tumors (currently only used for B-cell malignancies).

At an event in Kentucky on Wednesday commemorating September as Childhood Cancer Awareness Month and speaking publicly for the first time regarding the research projects selected, Governor Matt Bevin stated, “This encourages, with just a few million dollars, the ability for collaboration in a powerful, powerful way,” Bevin said. “And I think that’s creating a tremendous level of dialogue, but also hope for the families, for the universities themselves, and for the possibility of finding cures for childhood cancer.”

ACCO’s Why Not Kids research efforts will be focused on promoting the latest in scientific advancements utilizing immunotherapy and molecularly-based treatment. ACCO will work with state pediatric oncology programs and implement these awareness and advocacy campaigns utilizing state cancer registry data, population-based incidence, and virtual tissue biorepositories to inform funding decisions. Funding for Why Not Kids pilot sites comes from Amazon and have been selected based on the June 2018 Centers for Disease Control published report of childhood cancer incidence by state with further review by experts with over 50 years of combined experience in state level cancer epidemiology and cancer registries.

About ACCO

The American Childhood Cancer Organization was founded in Washington, D.C. in 1970 by parents of children and adolescents diagnosed with cancer to advocate for their needs and support research so every child survives and leads a long and healthy life. The nation’s largest grassroots organization at the forefront of the crucial battle against childhood cancer, the ACCO is dedicated to shaping policy, supporting research, raising awareness, and providing educational resources and innovative programs to children with cancer, survivors, and their families. Since its inception, the ACCO has helped support more than half a million families affected by childhood cancer. ACCO now has 35 local ACCO affiliates known as Founding Hope chapters throughout the United States. For more information on the partnership with Amazon visit www.acco.org/amazon.

 

FOR MORE INFORMATION OR TO SET UP AN INTERVIEW: Contact Jamie Ennis Bloyd, Director of Government Relations and External Affairs, American Childhood Cancer Organization at jbloyd@acco.org 859-948-4626 or Ruth Hoffman, Chief Executive Officer, American Childhood Cancer Organization rhoffman@acco.org 202-262-9949.

 

Causes, Risk Factors, and Prevention of Childhood Brain and Spinal Cord Tumors

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: