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

Posted on March 23, 2018 by American Childhood Cancer Organization

Treating Brain and Spinal Cord Tumors

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

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

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

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

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

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

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

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

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

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

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

More about Childhood Brain Tumor Cancers:

More about Childhood Spinal Cord Tumor Cancers:

Learn More About the Different Types of Childhood Cancers:

Childhood Brain Tumor Cancer (Brain Stem Tumors)
Spinal Cord Tumor Cancer
Childhood Neuroblastoma Cancers
Childhood Hodgkin Lymphoma Cancers
Non-Hodgkin Lymphoma Cancers
Wilms tumor (Kidney Tumors)
Rhabdomyosarcoma
Retinoblastoma
Bone cancer (including osteosarcoma and Ewing sarcoma)
Leukemia Cancers: Acute lymphocytic (lymphoblastic) leukemia (ALL) Acute myelogenous leukemia (AML); Juvenile myelomonocytic leukemia (JMML)
Hepatoblastoma (Liver Cancer)
Rhabdoid Tumors

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:

Action Days 2018

Posted on March 8, 2018 by American Childhood Cancer Organization

WASHINGTON, D.C. – APRIL 23rd – 24th, 2018

CLICK HERE or the button below to REGISTER:

You’re invited to join the American Childhood Cancer Organization and the Alliance for Childhood Cancer for the 7th Annual Childhood Cancer Action Days. This two-day event in Washington brings our community together to advocate for important childhood cancer issues currently before Congress.

Your Voice Matters:
A strong showing of advocates at Action Days 2018 is more crucial than ever. We will be at a critical point in the legislative process on several key issues for children with cancer. Sharing your story in Washington this spring will ensure the voice of children with cancer is heard loud and clear!

Details:

Monday, April 23rd: Issues and Advocacy Training at the Washington Marriott at Metro Center Hotel (775 12th St NW, Washington, DC 20005)
Tuesday, April 24th: Kick-off breakfast and pre-scheduled meetings with Members of Congress and their staff on Capitol Hill
Registration is now open! A registration fee of $50 per family will help cover expenses, including breakfast and lunch on training day for all attendees. A limited number of scholarships will be available (see registration page). Transportation to/from Childhood Cancer Action Days is the responsibility of those attending.

Hotel Reservations:
The Alliance has a room block ($209/night) at the Washington Marriott at Metro Center Hotel for the nights of Sunday, April 22, Monday, April 23rd and Tuesday, April 24th. You may make reservations by calling 1-800-393-2510 and mentioning “Childhood Cancer Action Days”; or by using the online booking link. We recommend you reserve your room early as the room block may reach capacity!

RESERVATIONS MUST BE MADE BY MARCH 23RD – CLICK HERE

Questions? Please contact alliance@asco.org.

About the Alliance for Childhood Cancer:
Founded in 2001, the Alliance for Childhood Cancer is a forum of over thirty national patient advocacy groups, and medical and scientific organizations. These organizations meet regularly in Washington, DC to share ideas and concerns and work collaboratively to advance policies leading to improved research, public education, and diagnosis, treatment, supportive care and survivorship for children and adolescents with cancer. Read More…

On behalf of the American Childhood Cancer Organization and the Alliance for Childhood Cancer, we look forward to seeing you in Washington, DC in April.

International Childhood Cancer Day 2018

Posted on February 15, 2018 by American Childhood Cancer Organization

Advancing Cures, Transforming Care, Instilling Hope

FOR IMMEDIATE RELEASE – February 15, 2018 – Beltsville, MD – (ICCD) is celebrated around the world each year on February 15^th. Originally commemorated in 2002, ICCD is day founded by Childhood Cancer International (CCI), a global network of 188-member organizations in 96 countries. Childhood Cancer International, along with the American Childhood Cancer Organization (ACCO), is committed to working collaboratively towards advancing cures, transforming care, and instilling hope for all children and adolescents diagnosed with cancer in the world, wherever they may live.

Sadly, childhood cancer continues to be the leading cause of non-communicable related death in children throughout the world. Globally, more than 300,000 children are diagnosed with cancer each year, including nearly 16,000 in the United States. Approximately 80 percent of our world’s children with cancer live in low-middle-income countries (LMICs) where more than 80 percent of these children die of their disease. In developed countries like the United States, Canada, the United Kingdom, Japan and others, more than 80 percent of children survive cancer with hope to live productive and meaningful lives.

The global coalition believes all children deserve hope for a cure – no matter where they live – not more excuses. We can no longer sweep this issue “under the rug.” Children are the future of our country and our world. Their vitality is the heartbeat of the world, a shared passion that can unite us because our future as a global community depends on it. Ruth Hoffman, CEO of ACCO as well as President of CCI says, “ACCO is so proud to provide the U.S. based voice in advocating for all children, no matter where they live.”

In the United States events will be taking place across the country commemorating the day, including an event in Kentucky in which Governor Matt Bevin will be speaking at a rally celebrating first time state level funding for childhood cancer research. Specially designed t-shirts including over 7,000 names of children diagnosed with cancer have also been sold across the country in their honor and memory.

The American Childhood Cancer Organization was founded in Washington, D.C. in 1970 by parents of children and adolescents diagnosed with cancer and is dedicated to shaping policy, supporting research, raising awareness, and providing educational resources and innovative programs to children with cancer, survivors, and their families. For more information please visit acco.org.

# # #

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

Posted on February 10, 2018 by American Childhood Cancer Organization

What causes brain and spinal cord tumors in children?

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.

More about Childhood Brain Tumor Cancers:

Learn More About the Different Types of Childhood Cancers:

Childhood Brain Tumor Cancer (Brain Stem Tumors)
Spinal Cord Tumor Cancer
Childhood Neuroblastoma Cancers
Childhood Hodgkin Lymphoma Cancers
Non-Hodgkin Lymphoma Cancers
Wilms tumor (Kidney Tumors)
Rhabdomyosarcoma
Retinoblastoma
Bone cancer (including osteosarcoma and Ewing sarcoma)
Leukemia Cancers: Acute lymphocytic (lymphoblastic) leukemia (ALL) Acute myelogenous leukemia (AML); Juvenile myelomonocytic leukemia (JMML)
Hepatoblastoma (Liver Cancer)
Rhabdoid Tumors

About American Childhood Cancer Organization

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:

Childhood Brain and Spinal Cord Cancer Tumors – Detection and Diagnosis

Posted on February 5, 2018 by American Childhood Cancer Organization

Childhood Brain and Spinal Cord Tumors: A Brief Introduction

When grouped together in a single classification, cancers in the brain and spinal cord are the second most common form of cancer in children after childhood leukemia, with more than 4,000 new diagnoses every year. However, it is important to recognize that this is a very broad classification: in fact, there are many different types of brain and spinal cord cancers, each of which can cause different symptoms and each of which may require a unique treatment approach. It is also important to note at the outset of any discussion about cancers of the brain and spinal cord that, unlike in other areas of the body, oncologists do not differentiate between benign (non-cancerous) and malignant (cancerous) tumors in the central nervous system. Both types of tumors can be life-threatening if not treated. For this reason, oncologists usually refer to “brain tumors” instead of “brain cancers”.

Childhood Brain and Spinal Cord Tumors: Detection Through Common Signs and Symptoms

As with all childhood cancers, there is no “early detection” screening process for tumors of the central nervous system. Diagnosis usually comes after parents begin to observe unusual medical symptoms. Most symptoms of brain and spinal cord tumors are caused by the tumor raising the pressure inside the brain (known as intracranial pressure). The increase in intracranial pressure can lead to symptoms such as:

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

Of course, most of these symptoms are extremely common and are only rarely caused by a tumor. However, if symptoms continue over time or worsen, or in the case of seizures begin very suddenly, your pediatrician may recommend testing to properly diagnose the cause of the medical issue as quickly as possible.

Because the central nervous system controls the function of the entire body, the location of the tumor within the brain or spinal column may cause different types of symptoms:

Tumors in the cerebrum (large, outer part of the brain) can cause symptoms relating to the specific function controlled by the area of the cerebrum affected by the growth of the tumor, such as:
- Tumors in the area of the cerebrum responsible for movement can lead to weakness or numbness in a specific part of the body, usually only on one side
- Tumors in the area of the cerebrum responsible for language can cause speech or comprehension problems
- Tumors at the front of the cerebrum can lead to issues with thinking, personality, and language skills
- Tumors at the back of the cerebrum or near cranial nerves can cause issues with vision
Tumors in the cerebellum can cause symptoms relating to walking or other normal body functions
Tumors in the basal ganglia can cause unusual or abnormal body positions or movements
Tumors in cranial nerves (not those in the cerebrum) may cause loss of hearing, balance issues, weakness of facial muscles, or potentially trouble with swallowing
Tumors in the spinal cord may cause numbness, weakness, lack of coordination, and even bladder and/or bowel concerns

Childhood Brain and Spinal Cord Tumors: Diagnosis

In most cases, the first step in diagnosing a brain or spinal column is an imaging test, most likely an MRI (magnetic resonance imaging). An MRI is able to create detailed images of the brain using a combination of radio waves and strong magnets; moreover, it does not involve the use of radiation, which can be extremely damaging to the brain tissue of young children. While not painful or physically invasive, an MRI can be a difficult test for some children. It can take a long time and often requires the patient to stay still in a confining tube for an extended period. Some children may require sedation or medication to help them relax in order to make this test less stressful.

Should the MRI or other imaging scan reveal a tumor, the next step is, when possible, to conduct a biopsy, in which some or all of the tumorous tissue is removed from the body and examined under a microscope. A biopsy may be done simultaneously with surgery to remove the entire tumor, or it may be done as a stand-alone procedure in order to determine next steps in treatment. In some cases, usually due to the location of the tumor in a sensitive or dangerous area of the brain or spinal cord, a physical biopsy may not be possible and diagnosis must be made on the basis of imaging alone.

Specific types of biopsies include:

Stereotactic needle biopsy: Guided by MRI or CT scans, the surgeon drills a very small hole into the skull precisely over the location of the tumor. A very small, hollow needle then withdraws a small part of the tumor. This approach is usually used to biopsy tumors in areas where surgery may be difficult or dangerous, but a sample of tissue is still required for precise diagnosis.
Craniotomy: If the surgical team believes that they can safely remove all or most of the tumor, a biopsy will be performed as the tumor is removed. Small samples of the tumor are examined immediately during the surgery to determine whether further surgery is required.
Lumbar puncture (spinal tap): This test is used to determine whether there are cancerous cells in the cerebrospinal fluid, or the fluid that surrounds the brain and spinal cord. The test involves removing some of the fluid through a small needle inserted between the bones of the spine.
Bone marrow aspiration and biopsy: This test may need to be done if it is believed the tumor has spread beyond the nervous system. During the aspiration, a small amount of liquid bone marrow is removed from a large bone, usually the hip bone, using a small, hollow needle. A biopsy involves removing a small piece of bone along with some of the marrow.

More about Childhood Brain Tumor Cancers:

More about Childhood Spinal Cord Tumor Cancers:

Learn More About the Different Types of Childhood Cancers:

Childhood Brain Tumor Cancer (Brain Stem Tumors)
Spinal Cord Tumor Cancer
Childhood Neuroblastoma Cancers
Childhood Hodgkin Lymphoma Cancers
Non-Hodgkin Lymphoma Cancers
Wilms tumor (Kidney Tumors)
Rhabdomyosarcoma
Retinoblastoma
Bone cancer (including osteosarcoma and Ewing sarcoma)
Leukemia Cancers: Acute lymphocytic (lymphoblastic) leukemia (ALL) Acute myelogenous leukemia (AML); Juvenile myelomonocytic leukemia (JMML)
Hepatoblastoma (Liver Cancer)
Rhabdoid Tumors

About American Childhood Cancer Organization

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:

Treatment for Childhood Leukemia

Posted on December 20, 2017 by American Childhood Cancer Organization

What is the Treatment for Childhood Leukemia?

The majority of children diagnosed with childhood leukemia will be treated with chemotherapy. Chemotherapy (often simply called “chemo” for short) involves targeting cancerous cells with specific drugs. The specific type of drugs, their dosages, and the duration of the treatment will be unique to each patient, depending on the type and classification of leukemia, the cancer’s classification of risk, and the specific needs of each child. Surgery and radiation are not commonly utilized in the treatment of childhood leukemia, although they may be required to address specific health issues in certain cases. Because chemotherapy can have significant short- and long-term health effects on childhood leukemia survivors, researchers are continuing to investigate new and less toxic treatments such as immunotherapy and targeted chemotherapy; however, these treatments are still in the research phase.

Because AML and ALL are the two most common types of childhood leukemia, this discussion will focus specifically on their treatment.

Chemotherapy for ALL

Treatment for children with Acute lymphocytic leukemia (ALL) usually involves smaller dosages of chemotherapy but spread over a period of two-to-three years (boys often receive treatment for longer than girls, due to a higher risk of recurrence). For most children with ALL, chemotherapy will involve three distinct phases:

Induction: The goal of induction is to kill 99% of existing cancer cells and achieve “remission”, in which no cancer cells are found in the bone marrow and blood counts return to normal (this is not, however, the same as a “cure”). Induction usually lasts about one month and is extremely intense, requiring prolonged hospital stays and frequent visits to the doctor. Induction almost always includes intrathecal chemotherapy, in which the chemotherapy is targeted at the cerebrospinal fluid to kill any cancer cells that may have spread to the brain and/or spinal column.
Consolidation (intensification): This phase usually lasts for 1-2 months and is designed to reduce the number of cancer cells remaining in the body, as well as fight the potential for drug resistance among those cancer cells. This phase is also highly intense (often more so than induction).
Maintenance: About 95% of children with ALL will achieve remission after induction and consolidation. For these children, an additional 2 years of so-called maintenance chemotherapy will help prevent the disease from recurring. Maintenance is much less intensive, and usually involves the administration of chemotherapy for brief periods every 4-8 weeks. The early part of maintenance may involve 1-2 months of intensified treatments called re-induction or delayed intensification.

Chemotherapy for AML

Chemotherapy for AML is more intensive, involving higher dosages of treatment drugs but over a shorter duration. Chemotherapy for AML includes an induction phase and a consolidation (intensification) phase, but usually lacks a maintenance phase.

Induction: Induction for AML usually involves the administration of drugs for several days in a row, with treatments scheduled every 10-14 days. Less time between treatments is generally more effective but can lead to more severe side effects. Each treatment plan will depend on the child’s unique disease progression and their reaction to the chemotherapy. Treatment will continue until the bone marrow is clear of leukemia cells, usually after 2-3 treatment cycles. As with ALL, treatment usually involves intrathecal chemotherapy as well.
Consolidation (intensification): Between 85-90% of children with AML will achieve remission after the induction phase. Consolidation usually involves several more months of intensive chemotherapy, as well as intrathecal chemotherapy. In some cases, a stem cell transplant from a sibling may be appropriate as well, especially for children with high risk AML.

Although the duration of treatment is shorter for AML, it requires extensive supportive care and attention to ancillary issues such as nutrition, medication, and blood transfusions to cope with the more severe side effects, including (but not limited to) damage to the bone marrow responsible for creating new blood cells.

More about Childhood Leukemia Cancers:

Learn More About the Different Types of Childhood Cancers:

Childhood Brain Tumor Cancer (Brain Stem Tumors)
Spinal Cord Tumor Cancer
Childhood Neuroblastoma Cancers
Childhood Hodgkin Lymphoma Cancers
Non-Hodgkin Lymphoma Cancers
Wilms tumor (Kidney Tumors)
Rhabdomyosarcoma
Retinoblastoma
Bone cancer (including osteosarcoma and Ewing sarcoma)
Leukemia Cancers: Acute lymphocytic (lymphoblastic) leukemia (ALL) Acute myelogenous leukemia (AML); Juvenile myelomonocytic leukemia (JMML)
Hepatoblastoma (Liver Cancer)
Rhabdoid Tumors

About American Childhood Cancer Organization

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:

Signs and Symptoms of Childhood Leukemia

Posted on December 18, 2017 by American Childhood Cancer Organization

About Childhood Leukemia (ALL & AML)

Childhood leukemia—a blood-based cancer in which abnormal cancer cells grow in the bone marrow—is the most common type of childhood cancer, accounting for almost one-third of all childhood cancer diagnoses. There are three different types of childhood leukemia. The most common type—Acute lymphocytic (lymphoblastic) leukemia, or ALL, accounts for approximately 3 out of 4 cases of childhood leukemia. ALL stems from abnormal cells growth in immature lymphocytes, the white blood cells that help the body fight infection. Acute myelogenous leukemia (AML) accounts for about one out of four cases of childhood leukemia. AML begins with abnormal growth of myeloid cells, which are responsible for the development of non-lymphocytic white blood cells, red blood cells, and platelets. A third type of childhood leukemia—Juvenile myelomonocytic leukemia (JMML)—is extremely rare. Like AML, it develops in the myeloid cells. It is acute (quickly growing) but it does not develop and spread as quickly as AML or ALL.

Symptoms of Childhood Leukemia

Childhood leukemia begins in the bone marrow (the soft core within the bone responsible for the development of blood cells, including red blood cells, white blood cells, and platelets), quickly spreading into the blood stream and potentially crowding out healthy cells our body needs to properly function. Once in the blood stream, cancer cells begin to travel throughout the body and can impact the health of other organs. The symptoms of leukemia often depend on the type of blood cell impacted by the cancer, and whether the cancer has begun to impact other organs.

Red blood cells: Red blood cells are responsible for carrying oxygen from the lungs to every cell in the body. If childhood leukemia has caused a shortage of healthy red blood cells, symptoms can include:

Unusually pale skin
Fatigue
Weakness
Shortness of breath
Headaches
An unusual sensation of cold
Feeling lightheaded or dizzy

White blood cells: White blood cells help the body fight off illness caused by viruses and/or bacteria. If childhood leukemia has caused a shortage of white blood cells, or prevents the white blood cells from functioning properly, your child may not be able to fight infection properly. Recurring infections or infections that won’t go away even with medical intervention may indicate the presence of leukemia. Fever is usually the main indicator of an infection.

Platelets: Platelets are responsible for helping create blood clots in order to control and stop bleeding. If childhood leukemia has caused a shortage of platelets, symptoms can include:

Easy and frequent bruising
Easy bleeding
Frequent and/or severe nosebleeds
Bleeding gums

As childhood leukemia spreads from the blood stream into various other organs of the body, it can cause symptoms relating to specific organs, including:

Bone or joint pain
Swollen lymph nodes
Swelling in the abdomen caused by the build-up of cancer cells in the liver and/or spleen
Weight loss/loss of appetite caused by swelling abdominal organs pressing on the stomach
Coughing or trouble breathing caused by the build-up of cancer cells near or in the lungs
Headaches, seizures, vomiting, loss of balance, and blurred vision could be indications that leukemia cells have begun to accumulate in the brain and spinal cord
Swelling of the face and arms—SVC syndrome—a potentially very serious symptom caused by the build-up of cancer cells in the thymus, leading to pressure on the blood vessel moving blood between the head and arms
Symptoms more common in children with AML include skin rashes, gum problems (swelling, pain, and bleeding), extreme weakness, extreme tiredness, and slurring of speech

With the exception of serious symptoms such as SVC syndrome and the extreme fatigue and weakness sometimes (although rarely) seen in patients with AML, the most common symptoms of childhood leukemia are also symptoms of many routine childhood illness. Childhood leukemia is a very rare disease, and the presence of one or more of these symptoms does not mean that your child has leukemia. However, it is important to have your child examined by a pediatrician, who will suggest additional diagnostic testing if he or she suspects that the symptoms may be related to childhood leukemia.

Request for free resources here.

More about Childhood Leukemia Cancers:

Gold Ribbon Hero – Kendra Sparby

Posted on August 24, 2017 by American Childhood Cancer Organization

Introducing ACCO Gold Ribbon Hero, Ms. Kendra Sparby

Today’s Gold Ribbon Hero is Ms. Kendra Sparby, an outstanding young woman from Minnesota committed to making a difference in the lives of children battling childhood cancer! A recent high school graduate and incoming freshman at the University of Minnesota Duluth, Ms. Sparby has been actively advocating on behalf of American Childhood Cancer Organization and kids with cancer for several years now, hosting numerous PJammin® parties at local schools, selling ACCO PediCURE kits, and raising money online in support of ACCO’s mission to develop and provide, free of charge, educational resources and learning tools to families facing a childhood cancer diagnosis.

Many of our Gold Ribbon Heroes are the courageous and amazing kids fighting childhood cancer and the late effects that impact the lives of all-too-many childhood cancer survivors. Yet it is so important to highlight and celebrate Heroes like Kendra, who volunteer their time and energy to improve the lives of kids with cancer. If you would like to nominate a Gold Ribbon Hero in your life—someone who has gone out of their way to help, support, and/or advocate for children with cancer in your community—please visit ACCO’s website to complete a nomination form.

Why Childhood Cancer?

Kendra’s drive to advocate for kids with cancer began in middle school when her friend Grace Woods was diagnosed with cancer in seventh grade. To support Grace during her fight against cancer, Kendra began selling t-shirts at local high school football games. Unfortunately, Grace lost her fight with cancer on September 4, 2015 at the age of 16. Yet Kendra’s determination to honor Grace’s memory and continue fighting on behalf of all kids with cancer only grew stronger!

As an advocate and ambassador for ACCO, Kendra now travels to local schools to host PJammin® events and mini-class PJammin® parties. A signature fundraising mechanism for ACCO, these events also serve to teach kids and adults alike about the impact of childhood cancer on families facing this terrible disease. For instance, participants in PJammin® events wear PJs to symbolize the days, weeks, and even months that kids battling cancer spend in hospital wards wearing PJs or hospital gowns. In addition to hosting PJammin® events, Kendra has sold more than 80 PediCURE kits. Kendra’s other fundraising initiatives include a 12-12-12 Challenge which encourages participants to participate in 12 days of physical activity (with 12 exercises each day) OR donate $12 to ACCO, or even do both to honor the 12,000 children who lose their lives to cancer every year.

In 2016, Kendra raised $1,100 for ACCO and she is hoping to raise a similar amount this year. And she is well on her way to achieving this incredible goal: since February, she has already raised $980! If you would like to make a donation to Kendra’s fundraiser, we invite you to do through her fundraising page at https://give.acco.org/campaign/kendra-sparby/c122630.

About Kendra

Kendra graduated from high school in May 2017 and will attend the University of Minnesota Duluth in the fall, where she hopes to major in biology. She is an active and talented figure skater, and is a double gold medalist with the US Figure Skating Association. She hopes to compete as part of the University of Minnesota’s synchronized skating team.

Kendra is also a successful participant in the Miss America Organization. As the 2016 Miss Heart of the Lakes Outstanding Teen, she placed in the top five in this year’s Miss Minnesota pageant! This is the culmination of a very successful pageant career, having previously won Miss Princess Altona in 2013, Miss Moorhead’s Outstanding Teen in 2014, and Miss Heart of the Lakes Outstanding Teen in 2015. Kendra has used her success in the Miss America Organization to highlight the critical need to raise awareness about childhood cancer and advocate on behalf of children fighting cancer across the country.

We would like to take this opportunity to thank Kendra for her amazing work on behalf of ACCO and kids with cancer!

About American Childhood Cancer Organization

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.

Gold Ribbon Hero Korbyn M

Posted on June 26, 2017 by American Childhood Cancer Organization

Incredible Strength and Courage

“Reason this person is a Gold Ribbon Hero: I think my grandson is a Gold Ribbon Hero because from the time he was diagnosed with high risk ALL at 9 months until present day, 32 months old, Korbyn has displayed incredible strength and courage. As his grandmother, I am amazed how he has endured the treatments he has received – countless rounds of chemo, clinical trial chemo, weekly central lines bandage changes, radiation and a bone marrow transplant. Sadly, none of this treatment has kept Korbyn’s cancer away. We are all thankful Korbyn was accepted for a clinical trial at CHOP for CAR T cell therapy. Korbyn and his parents will travel from their Oviedo, FL home to Pennsylvania in July and will be there for 6 weeks for treatment. Korbyn never met a stranger and puts a smile on the nurses, techs, doctors faces day in and day out. There is nothing sweeter then his smiling face, blowing kisses and giving bear hugs, never waivering his dynamic personality. I tell anyone who will listen, Korbyn is my hero. We would love for you to follow Korbyn on this next adventure on his facebook page, KORBYNS KOURAGE. Please feel free to share and follow.” – Cindy R.

Washington Post: Parents of sick kids try to remind Congress what the health-care debate should be about

Posted on June 23, 2017 by American Childhood Cancer Organization

By Washington Post Columnist – Petula Dvorak

Washington post sick kids try to remind Congress what the health-care debate

“Is she okay?” the startled legislative staffer asked, eyes shifting to the adults around him as the trach tube protruding from the neck of a 2-year-old gurgled.In the air-conditioned, marble halls of Congress, you often hear the click of heels as staffers rush from room to room or the booming voices of our nation’s representatives making a pitch for some legislation. You do not hear the gurgle of a trach tube. Until this week. “Let me just suction,” one mom said as a blue-suited staffer’s eyes widened at the strange sounds coming from the toddler in pigtails. “We could see it in their eyes, most of them have never seen a child with a trach tube,” said Elena Hung, one of the moms who on Tuesday walked the halls pushing her child’s giant medical rig, showing Capitol Hill folks the actual kids their wheeling, dealing, backroom bargaining and political gamesmanship will affect in the repeal and replacement of the Affordable Care Act.

[What the Senate bill changes about Obamacare]