Contact Us | Location

Error: Contact form not found.

About Spinal Cord Cancer Tumors – Signs and Symptoms

Author Archives: American Childhood Cancer Organization

About Spinal Cord Cancer Tumors – Signs and Symptoms

Posted on January 15, 2019 by American Childhood Cancer Organization

The Signs and Symptoms of Spinal Cord Tumors in Children

Spinal Cord Tumors in ChildrenTogether, the brain and the spinal cord—the sensitive column of nerve cells inside the vertebrae of the spine—make up our central nervous system (CNS). Cancers of the central nervous system, more commonly called brain and spinal cord tumors, are the second-most common form of cancer in children, after leukemia. Statistically, brain tumors and spinal cord tumors are often grouped together; however in reality, there are a number of different types of tumors of the brain and the spinal cord, each of which requires a unique treatment approach and carries its own prognosis (outlook).

Usually, abnormal cell growths like tumors are classified as malignant (cancerous) or benign (non-cancerous). This distinction is significantly less important for spinal cord tumors because (1) spinal cord tumors rarely spread into other systems like other malignant cancers and (2) malignant and benign tumors can be equally life-threatening. Whether benign or malignant, as the tumor grows, it places pressure on and potentially restricts critical tissues of the CNS. Thus, both malignant and benign tumors can cause similar symptoms and require an aggressive treatment approach.

Symptoms and Early Detection of Spinal Cord Tumors

Unfortunately, as with other types of childhood cancer, early detection of a spinal cord tumor is generally not possible. Unlike with some common adult cancers, there are no screenings or testing options to detect the early growth of a tumor within the spinal cord. For most children, detection and diagnosis come only after the tumor has grown large enough to interfere with the normal functioning of the CNS and begin causing noticeable symptoms.

Symptoms of a spinal cord tumor can—and often do—vary widely from child to child. Specific symptoms will depend heavily on where the tumor is growing along the spinal cord, how much it is pressing on and restricting otherwise healthy nerves and tissues, how quickly it is growing, and the age and development of the child. However, some of the most common signs of a spinal cord tumor may be issues such as:

  • Pain in the back or neck
  • Pain spreading from the back towards the arms and/or legs
  • Sciatica
  • Numbness, weakness, and or tingling in the extremities, particularly the legs
  • Changes to urination or bowel habits
  • Difficulty walking
  • Partial paralysis
  • Spinal deformity
  • Delay in reaching growth and development milestones such as sitting or walking

Spinal cord tumors in children are extremely rare, and many of these symptoms are also symptoms of common childhood ailments. However, if you notice these or other unusual health problems in your child, it is important to have your child checked by a pediatrician without delay. If your child’s pediatrician believes that these symptoms may be caused by a spinal cord tumor, he or she will refer you and your child to a neurologist and/or an oncologist for additional testing to ensure a prompt and accurate diagnosis.

More about Childhood Spinal Cord Tumor Cancers:

Learn More About the Different Types of Childhood Cancers:

Together, we can make a difference.
Donate today because kids can’t fight cancer alone®.

Donate to ACCO

About American Childhood Cancer Organization

The American Childhood Cancer Organization was founded in 1970 by parents of children and adolescents diagnosed with cancer. As the nation’s oldest and largest grassroots organization dedicated to childhood cancer, ACCO is committed to shaping policy, supporting research, raising awareness, and providing free educational resources to kids with cancer, survivors, and their families. Additionally, ACCO is the sole U.S. member of Childhood Cancer International (CCI) and has helped support more than half a million families over the past 50 years. Help make childhood cancer a national health priority because kids can’t fight cancer alone®. 

For more information about how ACCO can help your family, call 855.858.2226 or visit:

Gold Ribbon Hero: Savannah

Posted on January 15, 2019 by American Childhood Cancer Organization

Meet Savannah, a brave cancer warrior that was taken too soon. Savannah fought a long, hard and very painful battle with Osteosarcoma. Her cancer was found in her left pelvic bone with metastasis occurring in lung nodules, her sacrum, and L5 vertebrae. The aggressive cancer spread to her right femur during traditional therapy and research studies. Unfortunately, Savannah was not a candidate for surgery. 

During her fight she was able to embrace her hair loss and enjoyed using makeup. Savannah was a sassy and strong 14-year-old who turned to her faith to find comfort. An animal lover who rescued over 100 dogs, 7 ducks, and a horse; she even volunteered at the local humane society and various ranches in Arkansas. Her final words were “Love each other, don’t commit suicide, and look towards the Lord.” Savannah passed away on July 20, 2018.

To learn more about osteosarcoma visit: https://www.acco.org/bone-cancer/

 

 

Together, we can make a difference.
Donate today because kids can’t fight cancer alone®.

Donate to ACCO

About American Childhood Cancer Organization

The American Childhood Cancer Organization was founded in 1970 by parents of children and adolescents diagnosed with cancer. As the nation’s oldest and largest grassroots organization dedicated to childhood cancer, ACCO is committed to shaping policy, supporting research, raising awareness, and providing free educational resources to kids with cancer, survivors, and their families. Additionally, ACCO is the sole U.S. member of Childhood Cancer International (CCI) and has helped support more than half a million families over the past 50 years. Help make childhood cancer a national health priority because kids can’t fight cancer alone®. 

For more information about how ACCO can help your family, call 855.858.2226 or visit:

 

More than 17,000 Chemotherapy drugs donated to Ethiopian Children

Posted on January 14, 2019 by American Childhood Cancer Organization

Happy boy and uncle copyTHE ACCESS TO CHILDHOOD CANCER ESSENTIALS (ACCESS) INITIATIVE ANNOUNCES TRANSFORMATIVE PROGRAMS TO INCREASE ACCESS TO CRITICAL MEDICINES

• Multistakeholder partnership seeks to enhance care for children with cancer in Africa
• Provides life-saving cancer medicines to children in Ethiopia in collaboration with Teva
• Funds critical research on childhood cancer medicine needs and access barriers in East Africa

FOR IMMEDIATE RELEASE – January 13, 2019 – Washington, D.C. Access to Childhood Cancer Essentials (ACCESS) today announced two initiatives with partners across sectors to improve the lives of children with cancer in Africa. The first, in collaboration with Teva Pharmaceutical Industries Ltd. provides essential, life-saving cancer medicines to children in Ethiopia, and the second funds critical research on childhood cancer medicine needs and access barriers in East Africa with the aim of improving future procurement.

Cancer is the highest non-communicable disease-related cause of death among children globally. While in high-income countries, more than 80 percent of children with cancer are cured, the same percentage of those in low- and middle-income countries die.

infographic_small
“Childhood cancer has no borders; yet, sadly, childhood cancer medicines do,” said Ruth Hoffman, CEO of the American Childhood Cancer Organization, and co-founder of ACCESS. “A major barrier to treating and curing children with cancer in low- and middle-income countries is lack of access to essential medicines.”

webgraphic_borders copyIn partnership with Teva Pharmaceuticals, Direct Relief and the Ethiopian Pharmaceutical Fund Supply Agency, ACCESS is providing an emergency provision of 13 cancer medicines from the World Health Organization’s Essential Medicine List—more than 17,000 vials—to children with cancer in Ethiopia.

pull quote for press release

This comes as a response to an urgent plea from parents and medical providers of children with cancer, as well as health system leaders. Bitew Tesfaye, a farm laborer, father to seven children, including his six-year old daughter diagnosed with Hodgkin Lymphoma who is awaiting treatment in Addis Ababa shared, “We come from far away, hoping for our children to get well. We start treatment and begin to see light, but, when we are told medicine is not available or only available in a private pharmacy, our hope fades. Now, with access to these medicines, we have hope again.”

“Direct Relief is deeply appreciative to Teva and ACCESS for their leadership and initiative in providing critical treatments to underserved patients in Ethiopia and globally,” said Tom Roane, Strategic Initiatives Director at Direct Relief. “Thanks to this collaboration, patients who would otherwise be unable to access cancer therapies will be able to receive the treatments they need to recover.”
ACCESS is also launching an innovative research program to study the many critical barriers to childhood cancer drug access in Kenya, Rwanda, Uganda, Tanzania and Ethiopia.Dakar girl_2

“A significant limitation to providing critical medicines to children with cancer in Africa is the lack of knowledge about the scope of the problem,” said Dr. Avram Denburg, Pediatric Oncologist and Principal Investigator, Centre for Global Child Health at The Hospital for Sick Children (SickKids), Canada and co-founder of ACCESS. “The ACCESS East Africa Program is forecasting childhood cancer medicine needs in the region. This will help inform national government procurement efforts and generate evidence of specific barriers to childhood cancer medicine access in each of these countries.” This program is made possible through the generous support of Friends of Cancer Patient’s Ameera Fund and in collaboration with the SickKids Centre for Global Child Health, American Childhood Cancer Organization, Clinton Health Access Initiative and World Bank.

Group photo high level meeting copy

Addressing both immediate and long-term needs, these initiatives represent the power and promise of innovative collaborations between non-profit organizations, the pharmaceutical industry, academia and global health institutions to help save lives of thousands of children with cancer.

For further information or to support these important initiatives, please visit www.accessentials.org.

 

About Access to Childhood Cancer Essentialsaccess logo

The Access to Childhood Cancer Essentials (ACCESS) Initiative is a multi-stakeholder collaboration focused on improving access to essential medicines for children with cancer globally. Its vision is of a world where the cure of childhood cancer is bounded by the limits of our knowledge, not the limits of our reach. Its mission is to create and implement innovative solutions to childhood cancer drug and radiotherapy access in low and middle income countries so that all children in the world, regardless of where they live, have access to hope for a cure. Visit www.accessentials.org

About Tevateva logo
Teva Pharmaceutical Industries Ltd. (NYSE and TASE: TEVA) is a global leader in generic medicines, with innovative treatments in select areas, including CNS, pain and respiratory. We deliver high-quality generic products and medicines in nearly every therapeutic area to address unmet patient needs. We have an established presence in generics, specialty, OTC and API, building on more than a century-old legacy, with a fully integrated R&D function, strong operational base and global infrastructure and scale. We strive to act in a socially and environmentally responsible way. Headquartered in Israel, with production and research facilities around the globe, we employ 45,000 professionals, committed to improving the lives of millions of patients. Learn more at www.tevapharm.com.

About American Childhood Cancer Organization

acco logoThe American Childhood Cancer Organization was founded in Washington, D.C. in 1970 by parents of children diagnosed with cancer to advocate for their needs and support research. The nation’s largest grassroots organization at the forefront of the crucial battle against childhood cancer and sole U.S. member of Childhood Cancer International, 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 in the U.S. and expended to provide grant funding to support childhood cancer programs in Ethiopia. Visit www.acco.org.

About Centre for Global Child Health

Sick Kids Center for Global Health logoThe Centre for Global Child Health is the dedicated hub for global child health-focused activities at The Hospital for Sick Children (SickKids). With a rich history of innovation in global paediatric health and a reputable network of global partners, the Centre for Global Child Health is well poised to effectively address global child health issues. The Centre supports the global health agenda through collaborative research grounded in scholarship, sustainable capacity building through education, advocacy for improved maternal and child health and the active communication of results to local, national and inter-national stakeholders. For more information, please visit www.sickkids.ca/globalchildhealth and follow on Twitter @SickKidsGlobal.

About Direct Relief

Direct Relief logoDirect Relief is a humanitarian aid organization, active in all 50 states and more than 90 countries worldwide, with a mission to improve the health and lives of people affected by poverty or emergencies. Direct Relief works to equip healthcare providers who care for vulnerable people on an ongoing basis and during emergencies. To achieve this goal, Direct Relief partners with local health providers, leading healthcare companies, and business leaders, to deliver medicines, medical supplies and equipment through transparent, reliable, and cost-effective channels. Direct Relief seeks to support existing health providers over the long term, delivering aid without regard to race, ethnicity, political or religious affiliations, or ability to pay.

Direct Relief partners with leading cancer treatment manufacturers to provide access to life-saving cancer treatment drugs to more than 50 public cancer hospitals around the world. Direct Relief is a member of the globally prominent Union for International Cancer Control (UICC), as well as the specialized cervical cancer association Global Coalition Against Cervical Cancer. In addition, Direct Relief is an Implementing Partner in the UICC’s City Cancer Challenge (C/Can 2025) initiative. More information on Direct Relief’s work on expanding access to cancer treatment can be found at: www.directrelief.org/issue/cancer.

FOR MORE INFORMATION OR TO SET UP AN INTERVIEW
• Dr. Avram Denburg, Staff Oncologist, The Hospital for Sick Children, Toronto, Canada: email Hillete Warner at hillete.warner@sickkids.ca
• Ruth Hoffman, Chief Executive Officer, American Childhood Cancer Organization: email rhoffman@acco.org 202-262-9949

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

Posted on January 11, 2019 by American Childhood Cancer Organization

What causes spinal cord tumors in children?

i-KVDjmX3When we think of the spine, or backbone, we generally think of it as the part of the skeleton that enables us to stand upright and walk. However, the bones that hold us upright have a second, and potentially even more important, responsibility: protecting a delicate column of nerve tissues that carry messages between the body and the brain. These messages between body and brain are what enables our body to function normally.

Put simply, a spinal cord tumor is an abnormal growth of nerve cells inside the spinal column. For most people, however, the more important question is: what causes the nerve cells in the spinal cord to grow abnormally into a tumor? On-going research indicates that most spinal cord tumors are probably caused by mutations—or changes—to the genetic structure of the nerve cells. Certain mutations occurring within the genes that control cell growth can cause the mutated cells to grow abnormally. If the mutations occur in oncogenes, cells may grow and/or replicate too rapidly, while if the mutations occur in tumor suppressor genes, cells may not die at the right time; in both cases, the result is a clump of abnormal cells that will, eventually, become a tumor.

But what causes these gene mutations? In the vast majority of cases, scientists simply do not know why these gene mutations occur. In a limited number of cases, the mutation may be inherited from one or both parents; in most cases, however, the mutation is random—an unfortunate accident that occurs during the natural lifecycle of the cell—and cannot be prevented or predicted. There are very few risk factors and no known lifestyle choices that impact a child’s risk of developing a spinal cord tumor.

Are there any risk factors related to spinal cord tumors?

A “risk factor” is anything that may impact a child’s risk of developing cancer. There are very few risk factors associated with spinal cord tumors in children; as noted above, most cases are likely the result of random and unpredictable gene mutations. However, in some rare cases, gene changes stemming from inherited genetic syndromes may carry an elevated risk of developing a spinal cord or brain tumor. These inherited and genetic syndromes include:

  • Neurofibromatosis type 1 (von Recklinghausen disease)
  • Neurofibromatosis type 2
  • Tuberous sclerosis
  • Von Hippel-Lindau disease
  • Li-Fraumeni syndrome
  • Gorlin syndrome
  • Turcot syndrome
  • Cowden syndrome
  • Hereditary retinoblastoma
  • Rubinstein-Taybi syndrome

The only other known risk factor for spinal cord tumors (and brain tumors) is exposure to radiation. In children, the danger of radiation is especially acute because the delicate cells of the central nervous system, including the spinal cord, are growing and replicating especially quickly. Today, physicians understand the unique dangers of radiation exposure in children and care is taken to minimize exposure, for example utilizing radiation-based scans such as x-rays only when necessary.

In addition to radiation-based imaging technology, radiation can be a valuable and highly-effective tool to help fight other types of cancers. When battling childhood cancers, oncologists must weigh the potential benefits of radiation therapy with the risk of developing radiation-induced spinal cord tumors. For children under the age of 3, most oncologists will seek to avoid the use of radiation entirely if at all possible. For some older children, the life-saving benefits of radiation therapy may outweigh the small risk of developing a spinal cord tumor or other secondary cancer.

Can spinal cord tumors be prevented?

When facing the devastating diagnosis of a childhood spinal cord tumor, parents often need to know if there is anything they could have done differently to prevent their child from developing cancer. The answer can be both frustrating and reassuring. Spinal cord tumors are nearly always the result of random gene mutations and can neither be predicted nor prevented. The one exception may be, as noted above, the use of radiation to treat another type of cancer; however, in these rare cases, the choice to use radiation therapy was likely the best possible—and maybe the only—option to fight that cancer and save the child’s life.

More about Childhood Spinal Cord Tumor Cancers:

Learn More About the Different Types of Childhood Cancers:

Together, we can make a difference.
Donate today because kids can’t fight cancer alone®.

Donate to ACCO

About American Childhood Cancer Organization

The American Childhood Cancer Organization was founded in 1970 by parents of children and adolescents diagnosed with cancer. As the nation’s oldest and largest grassroots organization dedicated to childhood cancer, ACCO is committed to shaping policy, supporting research, raising awareness, and providing free educational resources to kids with cancer, survivors, and their families. Additionally, ACCO is the sole U.S. member of Childhood Cancer International (CCI) and has helped support more than half a million families over the past 50 years. Help make childhood cancer a national health priority because kids can’t fight cancer alone®. 

For more information about how ACCO can help your family, call 855.858.2226 or visit:

Gold Ribbon Hero: Colton

Posted on January 9, 2019 by American Childhood Cancer Organization

47178821_2380946775267504_5378196745706536960_nMeet courageous Colton Whisler, a four-year-old warrior currently battling Perimeningeal Rhabdomyosarcoma, otherwise known as RMS. We were pleased to connect with Colton’s family through The Mark White Show, a popular radio program in Alabama. 


 In October 2018, Colton had experienced a facial droop that was originally diagnosed as Bell’s Palsy. Stephanie Whisler, Colton’s mom said “ we were told it was harmless and it would go away. He began crying and saying his ear was hurting. He then told us the floor was spinning.” At this point, Stephanie knew something was wrong with Colton. She decided to take him to his pediatrician at least once a week for the next three weeks where they treated him for a bad ear infection. Colton was then referred to an ear, nose and throat doctor (ENT) for tubes but when the pediatrician called him, the ENT thought it was something more. The ENT ended up meeting the Whisler family on his day off and found out that it wasn’t just an ear infection, it was a tumor. “We were in a state of shock, it was so hard to believe that our sweet perfect baby would be beginning the fight for his life,” said Stephanie.

Colton will be receiving approximately 15 months of chemo and radiation treatment and 30 treatments of proton therapy.  According to his mom, “his age is both a blessing and a curse. He is young enough that he doesn’t really understand the severity of his situation, but he also can’t verbalize what he is feeling. Being away from his big brother, Ty, has been one of the hardest parts of this for both of them.” Since Colton’s tumor is in the middle of the ear, it is considered inoperable. The Whisler’s have discussed end of treatment surgeries consisting of a cochlear implant and surgery to correct his facial droop.

Chemotherapy hasn’t been easy for Colton either. His mom told ACCO, “his journey started off really rough. The first round was incredibly hard on him. The amazing doctors and nurses have since come up with a strategy that helps to keep his nausea at bay.”

Colton is currently in the hospital receiving treatment. He is experiencing neuropathy of his feet due to a weekly drug he takes. He is in physical therapy twice a week and will be receiving braces for his legs soon. According to Colton, “courageous people never give up and nothing is going to steal my joy.’’

For more about Courageous Colton Whisler: https://www.facebook.com/Courageous-Coltons-Crew

For more information about Permeningeal Rhabdomyosarcoma please visit: https://www.acco.org/sarcomas/

We can help! For free resources please visit: https://www.tfaforms.com/4699752

Together, we can make a difference.
Donate today because kids can’t fight cancer alone®.

Donate to ACCO

About American Childhood Cancer Organization

The American Childhood Cancer Organization was founded in 1970 by parents of children and adolescents diagnosed with cancer. As the nation’s oldest and largest grassroots organization dedicated to childhood cancer, ACCO is committed to shaping policy, supporting research, raising awareness, and providing free educational resources to kids with cancer, survivors, and their families. Additionally, ACCO is the sole U.S. member of Childhood Cancer International (CCI) and has helped support more than half a million families over the past 50 years. Help make childhood cancer a national health priority because kids can’t fight cancer alone®. 

For more information about how ACCO can help your family, call 855.858.2226 or visit:

 

Spinal Cord Tumors in Children- Detection and Diagnosis

Posted on December 19, 2018 by American Childhood Cancer Organization

Detection and Diagnosis

child Spinal Cord cancerThe brain and the spinal cord make up what is known as the Central Nervous System (CNS) and together, they control nearly all of our body’s normal functions. The brain is composed of three major parts.

  • The cerebrum controls thinking, emotions, speech, learning, problem solving, and voluntary movement.
  • The cerebellum controls movement, balance, and posture.
  • The brain stem connects the brain to the spinal cord. It is responsible for autonomic functions such as breathing and heart rate, as well as the muscles and nerves that enable us to see, hear, walk, talk, and eat.

The spinal cord is the delicate column of nerve tissues contained within the “back bone”, the collection of vertebrae that protect the nerves. These nerves carry the critical messages between the brain and the body that enable the body to function normally and properly.

A spinal cord tumor is a growth of abnormal cells within the spinal cord. A tumor forms as cells grow and/or replicate too quickly, or do not die at the correct time. The tumor may be either malignant (cancerous) or benign (non-cancerous); however, this distinction is less critical when dealing with spinal cord tumors because both types of tumors can—as they grow—press on and constrict the healthy tissues of the spinal cord and impede their normal functioning. Thus, both benign and malignant tumors can cause similar types of symptoms. Usually, detection and diagnosis of a spinal cord tumor occurs only after a child begins to show unusual symptoms indicating a potential health concern.

The symptoms of a spinal cord tumor may vary widely from child to child, depending on individual circumstances such as exactly where the tumor is growing, how it is pressing on other nerves and tissues, how quickly it is growing, and the age and development of the child. Some of the more common signs of a spinal cord tumor may be issues such as:

  • Pain in the back
  • Pain spreading from the back towards the arms and/or legs
  • Trouble urinating
  • Change in bowel habits
  • Difficulty walking
  • Delay in reaching growth and development milestones such as sitting, walking, and/or talking

If you are concerned that your child is displaying these or other unusual symptoms, it is important that you take him or her to your pediatrician right away. Spinal cord tumors in children are very rare, and in many cases these or other symptoms may be caused by a simple childhood illness. However, if your child’s pediatrician suspects the presence of a tumor, he or she will refer you to a neurologist and/or an oncologist for additional testing to ensure a prompt and accurate diagnosis.

Diagnostic Testing for Spinal Cord Tumors

Usually, the process of detecting and diagnosing a spinal cord tumor in children requires several steps:

  • A physical exam and medical history: this will involve a discussion of your child’s general health and past health concerns and a physical exam to look for visible signs of disease such as a lump
  • A neurological exam: this will check your child’s mental status, coordination, and ability to walk, talk, and function normally. It may involve a series of questions and/or physical tests—depending on the age and developmental status of the child—to check brain, nerve, and spinal cord function.
  • Imaging exam: Physical and neurological exams will help determine if there is a health risk but will not provide any accurate diagnosis. In most cases, your child’s neurologist or oncologist will follow up all neurological exams with an imaging exam, which is the first step in detecting and locating an actual tumor. The most common imaging test is an MRI with gadolinium (also called nuclear magnetic resonance imaging). When injected near the site of the suspected tumor, the gadolinium collects near the abnormal cells, causing them to show up brighter in the image.
  • Blood tests: Along with imaging tests, blood tests can indicate the presence of “tumor markers”, or abnormal substances in the blood caused by certain types of cancers.

Whenever possible, final diagnosis will occur during and after surgery to remove all or part of the spinal cord tumor. The goal of surgery is to remove all of the tumor, or as much of it as possible. A pathologist will then examine a piece of the tumor under a microscope to diagnose the type and grade of the tumor. This diagnosis will determine the course of follow-up treatment to kill any remaining tumorous cells and hopefully prevent the tumor from re-growing.

In some cases, however, the tumor may be growing in an area of the spinal cord where it cannot be removed surgically without causing excess damage to nearby healthy tissue. In these cases, diagnosis will be made based on imaging alone, and a non-surgical course of treatment will be determined based on that diagnosis.

More about Childhood Spinal Cord Tumor Cancers:

Learn More About the Different Types of Childhood Cancers:

About American Childhood Cancer Organization

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

 

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

Gold Ribbon Hero: Damon

Posted on December 13, 2018 by American Childhood Cancer Organization

Meet Damon, a 16-year-old warrior with a love of sports. During November 2017, Damon took a hit to his left knee. His knee was swollen but he continued to play through the season despite the pain. Two days before Thanksgiving, the Sooter family was told that Damon needed an MRI to assess a benign tumor that they found. They found that the tumor was taking up 55% of his distal femur and they removed it in December of 2017. 7EDBDDC3-1BD8-46C3-A4F3-7302858EE68C
13E13CFB-9DC4-49D0-BA18-64A53F35318CBaseball season started in March of 2018 and Damon came home one day after practice saying that his right knee felt like his left one previously. They didn’t really think anything of it – so Damon finished out the baseball season the best he could.  Damon’s mother, Tiffiney said, “for a minute the world stopped and went dark. It was Damon’s 16th birthday. It was something that we were somewhat prepared for thanks in part to our spor

ts doctor. On May 2, 2018, everything went downhill from there. We live in a small town, everyone knows everyone and the radiologist calls the doctor panicking.”

“It was my sweet 16th. I had played a baseball game that day. I talked to my parents, then went to eat with my teammates. When I got home my parents took me in the garage and sat me down to tell me I had Osteosarcoma. It is rough but I knew I had to start working through it.” Damon’s tumor matched his left knee almost perfectly. The tumor was considered small, at just the size of a lemon when first detected. An aggressive treatment plan was scheduled almost immediately with 29 weeks of chemo at a high dose. 2CCEA2C2-CF87-4C6C-8A73-B34802A81A03

Damon knew that the beginning of treatment meant that he would lose his hair. He told his friends and family that he would be shaving his head. In June 2018, his friends and family decided to show up and stand alongside him to shave their heads in solidarity. Damon was in awe of what had happened, “it was awesome, I didn’t ask any of them to do it. They chose to do it. It was amazing.”AA35A551-DC7D-4E35-B664-45093A48705E

In August 2018, Damon’s doctor performed an internal prosthetic surgery to replace the bones around his knee joint. For a normal patient, the recovery should be 12 days. Damon made it his mission to leave within five days.  Damon’s doctor credits his quick rehabilitation to his active lifestyle.

Throughout his cancer journey, Damon has remained positive. He often says “we’re lucky, lots of kids are worse off than I am, and the little ones that don’t understand or can’t really explain what they’re feeling, it’s horrible.” Damon is currently cancer free and January 1, 2019, he ends chemotherapy treatment.EA6BBDC2-5220-4E3A-9B87-1132798E8C35

For more information about osteosarcoma please visit: https://www.acco.org/bone-cancer/

To donate: https://www.acco.org/donate/

 

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

Posted on December 1, 2018 by American Childhood Cancer Organization

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.

More about Childhood Spinal Cord Tumor Cancers:

Learn More About the Different Types of Childhood Cancers:

More about Childhood Brain Tumor Cancers:

Learn More About the Different Types of Childhood Cancers:

About American Childhood Cancer Organization

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

 

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

Gold Ribbon Hero: Kirby

Posted on November 29, 2018 by American Childhood Cancer Organization

0-2
Meet Kirby: a tenacious 4-year-old who BEAT cancer! ACCO initially met his mom, Sonnie, when she commented on an Instagram post. Forging a relationship with Sonnie meant that we got a peek into her life with Kirby and his brother (Aaron) and his sister (Mattea).

Kirby was diagnosed with Non-Hodgkin’s Burkitt’s Lymphoma in July 2017. He was losing weight, not sleeping, and was in major pain according to his mom. “Every day his mobility declined while his doctors ignored our concern and sent us home,” she shared.

0 copyBy August, Kirby was completely paralyzed from the waist down. The doctors wouldn’t listen. Kirby’s parents decided to take matters into their own hands and took Kirby to a larger hospital to go through more tests. After a tearful meeting with one doctor expressing she didn’t know what was wrong with Kirby, they ordered an MRI. Moments after the MRI was read, the doctor told Sonnie, “we found out what is wrong with your son, he has tumors on his spine and they are spreading. It’s cancer. We need to get him on an airplane on our way to Children’s Hospital.” By noon, the family was on an airplane to Children’s Hospital of Colorado – a home to the Sargent family for the next six months.

“Going through treatment was more than I expected. We were lucky enough to be able to stay in Brent’s Place in Aurora, Colorado. They provided everything from a tote of groceries to a place to stay and everything in between. One day, our car broke down on the way to chemo and they helped us to get to treatment at the hospital. The sense of community at the hospital and Brent’s Place was astounding.”

kirbyincape

The doctors found out that Kirby had cancer within his abdomen, hip, kidney and it was smothering his spine and spinal cord. They told Sonnie that he would survive but he would be wheelchair-bound for the rest of his life. As a result of cancer, Kirby has major nerve damage to his bowels, bladder, and mobility. He has no feeling of his legs, feet or toes.

Kirby and his family were visiting a local park this fall and he told his mom he was going to walk. He ended up taking a few steps with his brother and sister and hasn’t looked back since.

At 4 years old, Kirby can proudly say that he successfully beat cancer! He is walking and has not used his wheelchair for over three months. He was able to run the Butte, Montana Relay for Life as their youngest survivor. With the aid of braces, his dog and siblings, he is able to spread awareness and enjoy life. He is still in weekly doctor’s appointments and medical needs but he is getting used to the new normal.

0-8

On Halloween, Kirby wore his Go Gold cape with his Captain America costume. Kirby’s brother’s school asked Kirby to walk in their parade and he proudly strutted his stuff while clapping and high fiving the attendees. Since being declared “NED” he’s been able to stay out and trick or treat and even go out on a family dinner.

For more information on Non-Hodgkin’s Burkitt’s Lymphoma, please visit: https://www.acco.org/childhood-lymphomas/

For free resources for your child:
https://www.tfaforms.com/4699752

 

Together, we can make a difference.
Donate today because kids can’t fight cancer alone®.

Donate to ACCO

About American Childhood Cancer Organization

The American Childhood Cancer Organization was founded in 1970 by parents of children and adolescents diagnosed with cancer. As the nation’s oldest and largest grassroots organization dedicated to childhood cancer, ACCO is committed to shaping policy, supporting research, raising awareness, and providing free educational resources to kids with cancer, survivors, and their families. Additionally, ACCO is the sole U.S. member of Childhood Cancer International (CCI) and has helped support more than half a million families over the past 50 years. Help make childhood cancer a national health priority because kids can’t fight cancer alone®. 

For more information about how ACCO can help your family, call 855.858.2226 or visit:

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

Posted on November 20, 2018 by American Childhood Cancer Organization

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%

More about Childhood Brain Tumor Cancers:

Learn More About the Different Types of Childhood Cancers:

About American Childhood Cancer Organization

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

 

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