About Childhood Non-Hodgkin Lymphoma Cancer – Detection and Diagnosis

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About Childhood Non-Hodgkin Lymphoma Cancer – Detection and Diagnosis

Posted on July 2, 2019 by American Childhood Cancer Organization

About Childhood Non-Hodgkin Lymphoma (NHL)

i-Bz6DWc2Non-Hodgkin Lymphoma (NHL) is a specific type of cancer that begins in the body’s immune system, in cells known as lymphocytes. While there are a variety of different classifications of NHL—usually based on key features such as the size, shape, and growth pattern of the cancerous cells—most children are diagnosed with one of three distinct types of NHL (the other types are mainly diagnosed in adults). While all three types of childhood NHL are considered “high grade” (growing aggressively) and diffuse, they are all treated somewhat differently.

The three types of Non-Hodgkin Lymphoma in children are:

  • Lymphoblastic lymphoma (LBL): LBL begins in very young lymphocytes known as lymphoblasts, similar to acute lymphoblastic leukemia (ALL). In most cases, LBL develops from T cells (precursor T-lymphoblastic lymphomas) in the thymus, but occasionally in the tonsils or lymph nodes. B-cell NHL (precursor B-lymphoblastic lymphomas) can develop in lymph nodes in the chest or neck. LBL is an aggressive, quickly growing cancer that can cause breathing problems.
  • Burkitt lymphoma (small, non-cleaved cell lymphoma): Burkitt lymphoma accounts for about 40% of all childhood NHL diagnoses in the United States (primarily in boys between the ages of 5-10). In most cases, Burkitt lymphoma starts in the abdomen. In certain parts of Africa, Burkitt lymphoma accounts for nearly all NHL diagnoses and more than 50% of all childhood cancers, and usually forms in the jaw or face. Burkitt lymphoma is one of the fastest-growing cancers and must be treated quickly and aggressively.
  • Large cell lymphomas: Large cell lymphomas grow from more mature T or B cells. While this type of lymphoma can develop almost anywhere, it grows more slowly than other lymphomas and is unlikely to spread into the bone marrow or the brain. It is more common in older children and teens. There are two main subtypes: anaplastic large cell lymphoma (ALCL) and diffuse large B-cell lymphoma (DLBCL).

Detection and Diagnosis of Non-Hodgkin Lymphoma

In most cases, diagnosis of non-Hodgkin lymphoma in children comes when a parent or guardian notices unusual symptoms of illness or concern. Although in most cases, these types of symptoms are caused by any number of common childhood illnesses or infections, if your child’s pediatrician believes that lymphoma or another type of cancer may be present, he or she will recommend that you visit an oncologist or other specialist for further diagnostic testing. In most cases, NHL will be diagnosed and classified with a biopsy, in which some or all of the cancerous cells are surgically removed and examined under a microscope.

Childhood NHL can cause a variety of signs and symptoms of illness, usually stemming from where in the body the cancer is growing. Some of the most common symptoms of NHL include:

  • Enlarged lymph nodes (lumps under the skin that can be seen or felt) usually in the neck, underarm, collar bone, or groin. They are generally not painful (unlike enlarged lymph nodes resulting from infection).
  • Swollen abdomen caused by a tumor in or near the belly or a build-up of fluid because of a tumor. Other signs that of a lymphoma in the abdomen include feeling full after consuming only a small amount of food, pain, nausea, and/or vomiting.
  • Shortness of breath or cough caused by a lymphoma growing in the thymus or lymph nodes in the chest.
  • Swelling in the face, neck, arms, and upper chest may be caused by a lymphoma pressing on artery and veins near the heart, such as the superior vena cava. Other symptoms of so-called SVC syndrome include trouble breathing, headaches, dizziness, and loss of consciousness.

In addition, NHL can cause so-called B symptoms, which are generalized symptoms but often indicate the presence of an aggressive and quickly-growing lymphoma. B symptoms include:

  • Fever and/or chills
  • Unexplained weight loss
  • Night sweats
  • Fatigue (feeling very tired)

Finally, NHL may create symptoms stemming from too few health blood cells (because the lymphoma has spread to the bone marrow and is forcing out healthy blood cells). These symptoms include severe and/or frequent infections, easy bruising and/or bleeding, and fatigue, pale skin, and anemia.

More about Childhood Non-Hodgkin Lymphoma Cancers:

Learn More About the Different Types of Childhood Cancers:

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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:

After Treatment – Living as a Childhood Hodgkin Lymphoma Cancer Survivor

Posted on June 15, 2019 by American Childhood Cancer Organization

After Treatment: Living as a Childhood Hodgkin Lymphoma Survivor

IMG_2186The good news is that for most patients, the long-term prognosis for childhood Hodgkin lymphoma is excellent. For patients who have been through months or even years of difficult chemotherapy and radiation therapy, it is easy to see the final treatment—the declaration of “cancer free” or even “cured”—as the final destination of a long journey. Survivorship, however, is in fact its own journey, and one that can also be extremely challenging, both physically and emotionally.

For many survivors of childhood Hodgkin lymphoma, the emotional impact of survivorship—especially in the short term—can be two-fold. First, reintegrating back into a “normal” life is not always as easy as it sounds. For adolescents and young adults who have been forced away from school and social activities, managing the pressures of returning to academics and reestablishing friendships can be exceedingly and surprisingly stressful. Second, both survivors and their families must cope with the fear that the cancer will return (recurrence). This anxiety is extremely common among cancer survivors, and can be especially difficult to cope with during routine follow-up scans and exams.

Survivorship also comes with a lengthy list of potential long-term physical side effects, also known as “late effects”, which may result from the chemotherapy and radiation required to treat Hodgkin lymphoma. While treatment mechanisms are improving significantly, with more targeted treatments and smaller and more effective dosages, the risk of serious and long-term side effects has not yet been eliminated. It is critical that survivors follow a long-term follow-up program, potentially for the rest of the child’s adult life.

Some of the more common late effects include:

  • Second cancers: Hodgkin lymphoma survivors are a higher risk for developing a second type of cancer later in the life, usually relating to the chemotherapy or radiation needed to treatment the original cancer. Chemotherapy has been linked to the development of blood cancers such as leukemia, while radiation therapy has been linked to cancers in the organs adjacent to the treated area. For instance, young women who undergo chest radiation are more likely to develop breast cancer; chest radiation has also been linked to a higher risk of lung cancer. While second cancers cannot be prevented, it is important to maintain a healthy lifestyle, avoid known cancer-triggers such as tobacco use, and follow an aggressive early-screening schedule as appropriate.
  • Fertility problems: Cancer treatments in adolescents and young adults can cause long-term problems relating to fertility. For men, chemotherapy can temporarily or even permanently impact sperm production, while for women the late effects can be even more complex, affecting both the menstrual cycle and/or the reproductive organs. Luckily, steps can be taken in advance of treatment—such as banking sperm or surgically moving ovaries—to reduce the long-term impact on reproductive capabilities.
  • Increased risk of infection: Although the mechanisms are not yet well-understood, Hodgkin lymphoma survivors may have a compromised immune system, leaving them more vulnerable to bacterial and/or viral infections. This is especially problematic for individuals who have had their spleen removed (significantly less common now than in the past). Thus, it is especially important for survivors to get regular flu shots and other standard vaccines, and in some cases even get vaccines for certain bacteria.
  • Organ problems: Depending on the intensity of chemotherapy and the intensity and location of radiation, survivors can develop health problems in adjacent organs that may have been adversely impacted by treatment. The most common concerns are usually thyroid problems (hypothyroidism), heart disease, stroke, and lung damage.

Obviously, the goal of any treatment program is to maximize the chances of recovery while minimizing the risk for short- and long-term side effects. Despite rapid improvements in available cancer treatments, we have not yet found a way to fully eliminate these risks. Yet there are several steps survivors and their families can take to monitor for and identify late effects as early as possible, thereby increasing the likelihood that they can be successfully treated.

  • Develop a survivorship plan that includes a regular schedule of follow-up visits and early screening tests, a list of potential late effects, and a wellness plan.
  • Stick to all scheduled tests, exams, and screenings, even if they cause anxiety about recurrence.
  • Alert your physician to any health problems or concerns immediately, even if they seem insignificant. Unfortunately, many late effects cannot be diagnosed until symptoms become apparent.
  • Maintain accurate and up-to-date health records. As you see new physicians throughout your life, it is important that they have access to your medical history and all cancer treatments.
  • Maintain health insurance. Especially for young adults, the temptation to save money and go without can be overwhelming. Yet late effects can crop up suddenly and treatment can be expensive without insurance.

More about Childhood Hodgkin Lymphoma 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:

What is the expected life span of Childhood Hodgkin Lymphoma Cancer?

Posted on June 1, 2019 by American Childhood Cancer Organization

What is Childhood Hodgkin Lymphoma?

i-2fzt3T3Hodgkin lymphoma is a specific type of cancer that starts within white blood cells called lymphocytes found in the lymph (or lymphatic) system. Hodgkin lymphoma (HL) can be diagnosed in individuals of all ages, but is most prevalent in adolescents between the ages of 15-19 and again in adults older than 55. It is rare in children under the age of five. When classified as a type of childhood cancer, HL accounts for about 6% of all childhood cancers; however, most statistics relating to HL do not distinguish between diagnoses in children, adolescents, and adults.

There are two different types of Hodgkin lymphoma: classical Hodgkin lymphoma accounts for 9 out of 10 cases, with a more rare form known as Nodular lymphocyte-predominant Hodgkin lymphoma accounting for about 1 out of 10 cases. Classical Hodgkin lymphoma is characterized by the presence of a specific cancer cell known as Reed-Sternberg cells. As it name implies, Nodular lymphocyte-predominant Hodgkin lymphoma is characterized instead by lymphocyte-predominant cells. Both forms are distinct from non-Hodgkin lymphoma.

Expected Life Span: Outcomes and Prognosis of Childhood Hodgkin Lymphoma

As with most types of cancers, prognosis statistics for Hodgkin lymphoma are generally given in terms of “five-year survival rates”, which provides an average of the number of individuals who are alive five years after diagnosis. As always, however, these statistics are general: your child’s specific outlook will depend specifically on the unique nature of your child’s diagnosis, the stage of the disease at the time of diagnosis, and the assessment of risk at diagnosis. Generally speaking, however, the outlook for HL is favorable; it is usually fairly responsive to both chemotherapy and radiation therapy and was the first type of cancer to be “cured” with radiation therapy alone or in combination with chemotherapy.

When discussing five-year survival statistics for HL, the National Cancer Institute utilizes a staging system known as SEER with three distinct groupings. The most recent data in the SEER database is from 2008 to 2014; however, in 2014 most oncologists and researchers began utilizing a different staging system known as the Lugano classification. Therefore, we have provided five-year survival statistics here using the SEER system, but will discuss staging below as categorized by the more recent Lugano classification, as that is more likely what oncologists will use for a current diagnosis.

  • Localized: limited to one lymph node cluster or lymphoid organ, or has spread to only one organ beyond the lymph system. The 5-year survival rate for localized HL is 92%.
  • Regional: has spread from one lymph node area to an organ close by, is located in two or more lymph node clusters but only on one side of the body, or is “bulky”. The 5-year survival rate for regional HL is 93%.
  • Distant: has spread to a more distant part of the body such as the lungs or bone marrow, or to lymph node clusters above and below the diaphragm. The 5-year survival rate for distant HL is 78%.

Hodgkin Lymphoma Stages: Lugano Classification

Today, oncologists have moved away from the less descriptive groupings used in the SEER database towards a more descriptive system known as the Lugano classification system. In either case, however, the stage of the disease at diagnosis helps determine the extent to which the cancer has spread, the intensity of required treatment, and the long-term outlook.

The Lugano classification involves a three-tied staging system:

The first step involves a letter classification: A, B, E, or S. HL with a “B” classification is more advanced and usually requires more intensive treatment:

  • A: no symptoms at diagnosis
  • B: “B” symptoms at diagnosis: fever, 10% or more weight loss, and/or night sweats
  • E: the cancer has spread to an organ or tissue that is next to but not part of the lymph system
  • S: cancer has spread to the spleen

The second step involves four distinct phases: I, II, III, and IV:

  • Stage I: The cancer is found in one or more lymph nodes, but only one lymph node cluster.
  • Stage II: The cancer is found in two or more lymph node clusters, either above or below the diaphragm.
  • Stage III: The cancer is found in one or more lymph node cluster both above and below the diaphragm.
  • Stage IV: The cancer is found in one or more organs and in lymph nodes adjacent to those organs, or is in only one organ but has spread to lymph nodes distant from that organ, or is in the liver, lung, or bone marrow.

The third step involves assigning a risk group, usually stemming from whether the tumor can be considered “bulky”, defined as five centimeters or larger, as well as the presence of “B” symptoms:

  • Low risk: Stage I or Stage II with no bulky tumors or “B” symptoms
  • Intermediate risk: Stage I or II with either bulky tumors or “B” symptoms; or Stage III and IV without any “B” symptoms
  • High risk: Stage III or IV accompanied by “B” symptoms

More about Childhood Hodgkin Lymphoma 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:

What are Childhood Neuroblastoma Cancer, Stages and Prognosis?

Posted on May 28, 2019 by American Childhood Cancer Organization

Childhood Neuroblastoma: Staging

IMG_2014When a child is diagnosed with most types of childhood cancer, including neuroblastoma, a critical part of the diagnosis is the “stage” of the disease. The stage of the disease indicates how far the disease has spread or progressed from the site of the original tumor. In the case of neuroblastoma, there are currently two methodologies in use to determine staging.

The International Neuroblastoma Risk Group Staging System (INRGSS) relies upon the results of imaging tests such CT, MRI, or MIBG scans. Using this method, the stage can be determined in advance of a specific treatment protocol. This system utilizes a four-stage classification:

  • L1: the tumor remains confined to one area of the body and has not spread
  • L2: the tumor has only slightly spread but has at least one image-defined risk factor (IDRF)
  • M: the tumor has spread to a distant area of the body
  • MS: the tumor has spread only to the skin, liver, and/or bone marrow in a child who is younger than 18 months. To fall into this category, scans must demonstrate that no more than 10% of marrow cells are cancerous and the cancer has not spread to the bones.

Increasingly, many oncologists are moving towards this methodology because it enables them to develop a stage and risk assessment before deciding upon an appropriate treatment, especially for children for whom surgery is not appropriate or not immediately appropriate.

The International Neuroblastoma Staging System (INSS) assesses the stage of the disease after surgery to remove all or most of the tumor. This is the more traditional staging system, and is still the system utilized by the COG to determine risk groupings (see below). The stages in this system are:

  • Stage 1: the tumor has not spread and can be entirely removed by surgery.
  • Stage 2A: the tumor has not spread but cannot be removed entirely by surgery.
  • Stage 2B: the tumor has not spread but cannot be entirely removed by surgery. Nearby lymph nodes contain some neuroblastoma cells.
  • Stage 3: the tumor has begun to spread and (1) the cancer cannot be removed by surgery and has crossed to the other side of the body; (2) the cancer has not crossed the midline to the other side of the body except in the lymph nodes; and/or (3) the tumor is in the middle of the body and is growing out on both sides, either directly or through the lymph nodes, and cannot be removed entirely by surgery.
  • Stage 4: the tumor has spread to distant parts of the body such as lymph nodes, bone, bone marrow, skin, liver, and/or other organs.
  • Stage 4S: only applicable in children under 1 year of age. The cancer has potentially spread to lymph nodes, liver, skin, and/or bone marrow but only on one side of the body. Scans must show that no more than 10% of marrow cells are tumorous and the cancer has not spread to the bones.

Neuroblastoma Prognosis Factors

In addition to the stage of the disease, oncologists also determine so-called “prognosis factors”, which can help indicate how a specific neuroblastoma may respond to treatment. These prognosis factors may also impact risk assessment and long-term prognosis. For neuroblastoma, oncologists will look at:

  • Age
  • Tumor histology
  • DNA ploidy
  • MYCN gene amplifications
  • Chromosome changes
  • Neurotrophin (nerve growth factor) receptors

Childhood Neuroblastoma: Prognosis Statistics

For childhood neuroblastoma, statistics relating to prognosis and five-year survival rates are currently maintained by the Children’s Oncology Group (COG) and therefore utilize COG risk-groupings: low risk, intermediate risk, and high risk. These risk group classifications are determined by the disease’s stage and prognosis factors as described above.

As always when discussing five-year survival rates, it is important to note that these statistics provide only a statistical average for each classification; your child’s prognosis will depend on his or her specific diagnosis, health, response to treatment, etc.

Low Risk: “Low risk” neuroblastoma patients have a five-year survival rate that is greater than 95%. The low risk group includes neuroblastomas within the following categories:

  • Any Stage 1 diagnosis
  • Stage 2A or 2B; under 1 year of age
  • Stage 2A or 2B; older than 1 year of age; with no extra copies of the MYCN gene
  • Stage 2A or 2B; older than 1 year; with extra copies of the MYCN gene; with a favorable histology
  • Stage 4S with favorable histology, hyperdiploid, and 0 extra copies of the MYCN gene

Intermediate Risk: “Intermediate risk” neuroblastoma have a five-year survival rate of about 90-95%. The intermediate risk group incorporates diagnoses within these specific categories:

  • Stage 3; under 1 year of age; 0 extra copies of the MYCN gene
  • Stage 3; older than 1 year; 0 extra copies of the MYCN gene; with a favorable histology
  • Stage 4; less than 1 year of age; no copies of the MYCN gene
  • Stage 4S; 0 extra copies of the MYCN gene; with normal DNA ploidy and/or an unfavorable histology

High Risk: “High risk” neuroblastoma have a five-year survival rate of about 40-50%. A high risk diagnosis involves the following classifications:

  • Stage 2A or 2B, older than 1 year of age; extra copies of the MYCN gene; with an unfavorable histology
  • Stage 3 (regardless of age) with extra copies of the MYCN gene
  • Stage 3; over 18 months old; an unfavorable histology
  • Stage 4 with extra copies of the MYCN gene
  • Stage 4 and over 18 months old
  • Stage 4; between 12 and 18 months old; with extra copies of the MYCN gene, unfavorable histology, and/or a DNA index of 1
  • Stage 4S with extra copies of the MYCN gene

More about Childhood Neuroblastoma 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:

Childhood Neuroblastoma – Treatment

Posted on May 15, 2019 by American Childhood Cancer Organization

Childhood Neuroblastoma: Treatment Options

IMG_2016Neuroblastoma is a form of childhood cancer that begins in the early development of nerve cells. Because this rare form of cancer usually begins when the sympathetic nervous system is developing in an embryo or fetus, it occurs most often in infants and very young children, and is extremely rare in children over the age of 10. And because it begins when nerve cells are developing very quickly, the cancer’s development within each child can vary widely: some neuroblastomas grow and spread very quickly while other neuroblastomas grow very slowly. In some cases, the cancerous cells simply disappear on their own, while in other cases, the cancerous cells mature into normal nerve cells. Therefore, treatment for neuroblastoma often depends, upon other factors, on the stage and risk grouping of the cancer, as well as on the age of the child.

Treatment for Low Risk Neuroblastoma

Any time a child is diagnosed with cancer—neuroblastoma or otherwise—the goal is to utilize the least intensive treatment to minimize short- and long-term side effects while maximizing the damage to the cancerous cells. For children with low risk neuroblastoma, treatment may be as simple as frequent and routine monitoring to determine whether the tumor may die or mature into normal cells without intervention.

Surgery may be the only required treatment if all or most of the tumorous cells can be reached and safely removed. Even if it is not possible to remove the entire tumor with surgery, in some cases any remaining cancerous cells may die or mature on their own without the need for any additional intervention.

Chemotherapy may be required if the tumor cannot be safely or effectively removed with surgery or if the tumor continues to grow abnormally after surgery. If the tumor is causing symptoms due to its proximity to a nearby organ, a short course of chemotherapy may be utilized in advance of surgery to reduce the size of the tumor. A similar treatment method may be utilized to make the tumor more accessible to a surgeon.

Generally speaking, oncologists try to avoid the use of radiation therapy in young children due to the extremely high risk of negative short- and long-term side effects.

Treatment for Intermediate Risk Neuroblastoma

For children with intermediate risk neuroblastoma, treatment almost always involves a combination of surgery and chemotherapy. A typical course of treatment usually involves four to eight cycles of chemotherapy before and following surgery. One or more rounds of radiation therapy may be utilized only if the cancerous cells do not respond to chemotherapy or if the tumor is causing symptoms that require emergency treatment; again, the goal is to avoid the use of radiation therapy whenever possible in young children.

Treatment for High Risk Neuroblastoma

Children with high risk neuroblastoma will require aggressive treatment that usually involves an intensive mix of chemotherapy, surgery, radiation therapy, stem cell transplant(s), retinoid therapy, and immunotherapy.

Treatment usually starts with extremely aggressive chemotherapy designed to destroy as much of the cancer as possible, sometimes coupled with surgery to remove any remaining tumors. This phase of treatment is known as induction. If induction is successful, it will send the cancer into remission.

Induction is usually followed by a consolidation phase, which involves additional intensive chemotherapy treatments to rid the body of any remaining cancerous cells. Because this phase of treatment often destroys normal bone marrow as well as the cancer, it usually involves one or more stem cell transplants to help the body replace the damaged bone marrow. Stem cell transplants may be followed by immunotherapy to help boost the body’s ability to find and destroy cancer cells on its own, as well as radiation therapy at the primary tumor site to prevent recurrence.

If induction is successful, treatment will move to a maintenance phase involving a combination of additional immunotherapy and retinoid therapy. Retinoids are a type of differentiating agent that is believed to help some types of cancer cells mature into normal cells. The goal of this phase of treatment is to reduce the risk of recurrent neuroblastoma.

More about Childhood Neuroblastoma 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:

Staging and Prognosis Factors for Childhood Spinal Cord Tumors

Posted on April 10, 2019 by American Childhood Cancer Organization

Childhood Spinal Cord Tumor Cancer – Stages and Prognosis

Staging and Prognosis Factors for Childhood Spinal Cord TumorsThe central nervous system (CNS) is composed of the brain and the spinal cord, a delicate and sensitive column of nerves protected by the boney vertebrae of the spine. Statistically, CNS cancers are all grouped together as “brain and spinal cord tumors”, but of course in reality, there are a number of different and distinct types of spinal cord tumors, and each specific tumor requires a unique treatment approach and carries its own outlook for long-term survivorship.

When diagnosing cancer in either children or adults, oncologists usually differentiate between malignant (cancerous) cell growths or benign (non-cancerous) tumors. This distinction is much less important for spinal cord tumors, however. First, spinal cord tumors may spread within the CNS but rarely spread into other organs. Second, both malignant and benign tumors can be extremely life-threatening. As the tumor grows, it can press on and potentially restrict critical tissues of the CNS. Thus, both malignant and benign tumors can cause similar symptoms and have similar prognosis factors; both may require an aggressive treatment approach.

There is another critical difference between spinal cord tumors and other types of childhood cancer, also related to diagnosis: staging. When diagnosing most types of childhood cancer, oncologists will determine the cancer’s stage, or how far it has spread beyond the original point of growth. However, staging is not usually appropriate for spinal cord tumors, because as noted above, they do not, in most cases, spread into other organs or body systems. Instead, when determining an appropriate treatment option for a spinal cord tumor, oncologists will focus on key “prognosis factors”.

Key Prognosis Factors for Spinal Cord Tumors

Rapid advances in our knowledge of the central nervous system, as well as in available medical technology, mean that treatment options for children coping with a spinal cord tumor are more focused, more powerful, and more effective than ever before. And for many children, this means that the prognosis, or outlook, is excellent: statistically, about 75% of children with a tumor of the central nervous system are likely to survive more than 5 years.

However, a very basic statistic about 5-year survival rates hides a great deal of variation between specific types of tumors. In fact, each child’s long-term prognosis depends on a unique assessment of his or her key prognosis factors. These prognosis factors determine the unique treatment approach appropriate for your child’s unique diagnosis. In general, the key prognosis factors for most types of spinal cord tumors include:

  • The type of tumor
  • The size of the tumor at diagnosis
  • The location of the tumor at diagnosis
  • The “grade” of the tumor, or how quickly it is growing (grade I and II tumors usually grow slowly; grade III and IV tumors are more invasive)
  • How much, if any, of the tumor can be removed with surgery
  • Whether the tumorous cells have particular gene changes (mutations)
  • Whether the tumor has spread to other parts of the CNS
  • Whether tumorous cells have spread beyond the CNS
  • The child’s age at diagnosis
  • The child’s functional abilities as impacted by the tumor at diagnosis

If your child has been diagnosed with a spinal cord tumor (whether benign or malignant), his or her oncologist will help you understand all of these prognosis factors as they relate to your child and his or her specific type of tumor. While the general guidelines listed here and in other similar literature are important, they are just that: general. Only your child’s oncology team can determine your child’s key prognosis factors and the implications of those prognosis for late effects and long-term survivorship.

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: Kaydence

Posted on April 9, 2019 by American Childhood Cancer Organization

Meet Kaydence…

A donkey-loving 6-year-old diagnosed with Acute Lymphoblastic Leukemia.49203532_336420513753405_4458034366571872256_n

In the summer of 2018, Kaydence began bruising easily and looked exhausted. Her mother, Tarah noticed her color was off and on the night of July 4, 2018, she had a gut feeling that something was wrong. After getting labs done, the ER doctor came in and said, “I’m going to be honest – I don’t have good news. She’s got leukemia and if you waited another day – it would have been too late.” At the time of diagnosis, Tarah was eight and a half months pregnant with baby number five. A port was placed the next day.

Induction therapy started quickly after diagnosis and on July 17, 2018, Tarah was in the hospital delivering her fifth child when she received a phone call from her husband.   He rushed Kaydence to the emergency room with a fever. Three hours later, Tarah received a call saying, “This is childlife. Dad had to step away for a minute. What do you know?” In disbelief, Tarah’s mind started spinning. “What do you mean, what do I know?”

Tarah was immediately wheeled down to the emergency room to see her daughter lifeless on the table surrounded by doctors. “Kaydence had to be resuscitated for 15 minutes,” said the doctors. Kaydence’s intestines and stomach had ruptured and the doctors feared she wouldn’t make it through the night. Kaydence survived the night and was stable enough for a CT scan but not 0-7surgery. After reading the scans, doctors determined that her intestines and stomach were severely damaged but no holes were present saying that she might actually recover. They spent 10 days on life support in the intensive care unit.

Kaydence has persevered through many challenges during her treatment for ALL. In October 2018, after a poor response to the normal chemotherapy treatment, her family decided to proceed with CAR-T therapy. During the infusion, Kaydence had a very rare anaphylactic reaction to the preservative in the cells. She also experienced tumor lysis with lymphodepleting chemotherapy before infusions.

She’s had to re-learn how to stand, walk, use her hands and fingers, potty train and use words. She was on dialysis because of poor kidney function and she’s beat septic shock and e. Coli. Miraculously, even though Kaydence underwent 15 minutes of CPR, she showed no signs of brain damage or evidence of her ever needing CPR. Her ribs were not broken and her heart was not damaged.0-11

As of March 15, 2019, Kaydence said that her bone marrow is MRD-negative and she has since started school! She is continuing to paint and craft and enjoy her family.

More about Acute Lymphoblastic Leukemia

Acute lymphocytic leukemia (ALL) is a type of cancer of the blood and bone marrow — the spongy tissue inside bones where blood cells are made.

The word “acute” in acute lymphocytic leukemia comes from the fact that the disease progresses rapidly and creates immature blood cells, rather than mature ones. The word “lymphocytic” in acute lymphocytic leukemia refers to the white blood cells called lymphocytes, which ALL affects. Acute lymphocytic leukemia is also known as acute lymphoblastic leukemia.

Acute lymphocytic leukemia is the most common type of cancer in children, and treatments result in a good chance for a cure. Acute lymphocytic leukemia can also occur in adults, though the chance of a cure is greatly reduced.
Read more.

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:

ACCESS Global Initiative to Improve Availability of Childhood Cancer Medication

Posted on April 2, 2019 by American Childhood Cancer Organization

ACCO’s CEO, Ruth Hoffman and Access to Childhood Cancer Essentials (ACCESS) co-founder AvramLocal-Patient-Access
Denburg worked on a global initiative that is improving the availability of cancer related medications for children.

“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.

In January, a partnership with Teva Pharmaceutical Industries Ltd. led to emergency provisions of 13 cancer medicines included on the World Health Organization’s Essential Medicine List – more than 17,000 vials – to children with cancer in Ethiopia.

The request came as an urgent plea to Ruth Hoffman from parents of children with cancer being treated at Black Lion Hospital in Addis Ababa, Ethiopia. “We are so grateful to our colleagues at TEVA and to Giancarlo Francese, Head of Teva Access who quickly responded to this crisis situation,” said Ruth.

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.

Read more about Teva’s donation and ACCESS below.

Teva’s article about ACCESS’ donation: https://tevapharm.com/featuredstories/Moving_at_light_speed.aspx

Read the full press release here: https://www.acco.org/blog/accessinitiativetomedicine/

Learn more about ACCESS: https://accessentials.org/

 

Spinal Cord Tumors in Children: Treatment Options

Posted on April 1, 2019 by American Childhood Cancer Organization

Spinal Cord Tumors

Together, the brain and the spinal cord make up the central nervous system (CNS), which is responsible for controlling nearly all of our bodily functions. We often think of the spinal cord as the “back bone”, or the collection of vertebrae that we can feel running up the back. In fact, these vertebrae serve to protect the spinal cord, a delicate column of nerve tissues responsible for carrying critical informational signals between the brain and the body.

Spinal Cord Tumors in Children Treatment OptionsWhen classifying childhood cancers and discussing important statistics, tumors of the brain and tumors of the spinal cord are often lumped together as one broad grouping (although, of course, when diagnosing childhood cancer, each tumor is specified as a more specific “type”). And in general, treatment options for both spinal cord tumors and brain tumors are the same, usually consisting of some combination of

  • Surgery;
  • Radiation therapy; and/or
  • Chemotherapy

However, generally speaking, spinal cord tumors are often significantly more difficult to treat with surgery; therefore, for many (but not all) patients, radiation therapy and/or chemotherapy will play a larger role in the treatment of spinal cord tumors than it does for some of the more common types of brain tumors.

Radiation Treatment for Spinal Cord Tumors

Because of their location in the spinal cord, and how they grow and interact with the delicate nerves of the spinal cord, spinal cord tumors are—in general—more difficult to treat with surgery alone. In some cases, the tumor cannot be removed entirely, although surgery may be used to remove as much of the tumor as possible. In other cases, the location of the tumor makes it impossible to access the tumor safely; in other words, surgically removing the tumor may cause too much damage to the healthy tissue of the spinal cord.

Unfortunately, radiation therapy affects healthy tissue as well as tumorous tissue, although not as quickly. Therefore, every radiation therapy treatment is designed to maximize damage to the tumor—enough to destroy as many cancerous cells as possible and (hopefully) prevent the tumor from re-growing—while minimizing potential damage to healthy tissue. However, the short- and long-term side effects of radiation therapy are potentially dangerous, and therefore the risk of radiation therapy as a treatment tool must be weighed against the benefits it offers in the fight against childhood cancer. In general, as the risk of long-term side effects is higher in younger children, radiation therapy is usually not recommended for children under 3 except as a last resort. Your child’s oncology team will help you understand the risks and benefits of radiation therapy as a potential treatment option, to ensure that you are educated in the best treatment options for your child.

Treatment Options for Some Common Types of Spinal Cord Tumors

We will present some of the most common types of spinal cord tumors and their “recommended” treatment options here; however, it is important to remember that every child and every diagnosis is unique. Your child’s oncology team will develop an appropriate treatment specifically for your child.

  • Astrocytomas of the spinal cord: generally cannot be removed entirely with surgery. Surgery may be used to remove some of the tumor, followed by radiation therapy; some cases may require only radiation therapy.
  • Meningiomas: usually can be treated solely with surgery.
  • Ependymomas: generally can be removed through surgery, may be followed by with radiation therapy.
  • Choroid plexus tumors: benign papillomas are usually treated with surgery. Choroid plexus carcinomas are malignant, and while surgery can remove the tumor entirely, most oncologists will recommend following surgery with radiation therapy and/or chemotherapy.
  • Craniopharyngiomas: because these tumors usually grow very close to the pituitary gland, the optic nerves, and blood vessels critical to the brain, they are difficult to reach surgically. Surgery may be used to “debulk” the tumor (remove most of it); radiation therapy is the most common approach.
  • Germ cell tumors: surgery may be used to diagnose the type of germ cell tumor (germinoma, teratomas, and yolk sac tumors are the most common types), but can rarely remove it. Radiation therapy or a combination of radiation therapy and chemotherapy is the most common treatment approach.

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: Emma D.

Posted on March 31, 2019 by American Childhood Cancer Organization

E3077447-974F-41AA-9D38-38DA6F967CA5Meet Emma…

A PBR-loving, supergirl cancer warrior currently fighting stage IV medulloblastoma. She enjoys arts and crafts of all kinds, cooking, playing games and making jewelry. She also loves circuit boards, making slime and loves to paint.  She is a huge P!nk fan and was lucky enough to see her live last weekend!FullSizeRender

In 2017, Emma was a straight-A student heading into sixth grade. As a 5th grader, she  received ‘Student of the Month’ seven times. She was recognized for helping classmates, was on the honor roll, and a member of the student council. She was even a member of the robotics team for a year. Emma’s mother, Megan, said she was called several times throughout the school year because Emma was late for class. It turns out “she took too long hugging her former teachers and other students in the hall and was late,” recalls Megan.

In May 2018, Emma began dropping weight. She started vomiting occasionally but nothing too alarming. She was increasingly lethargic, had no appetite and headaches had started. After one episode of violent vomiting, Megan took Emma to the doctor but without a pattern, the doctor thought it was puberty. After swimming one day, Emma told her mother she was exhausted, which was out of character.48195660_1906290866346933_341537946861568000_o

Megan received a call that weekend from Emma’s dad after Emma was found vomiting in her bed. Emma was taken to the emergency room twice in the same day. On the second trip to the ER, a CT was ordered and ten minutes later Emma and her mother were given the news of her Medulloblastoma cancer diagnosis. “We were just in shock. We are still in shock. I have three friends with kids who have brain tumors. Two have died, Emma thought she was dying,” remembers Megan.

D177C210-DAD7-421E-932E-97F4E1308367In the span of ten minutes, Emma’s life changed forever. Megan said that the doctor said, “we see a mass, she is being flown to Oklahoma City.” It took a few minutes before I could catch my breath. I held Emma’s hand and I told her straight up. “Emma, the doctors say they see a tumor and we have to fly to Oklahoma City for another doctor to look at you.” Emma said, “Momma, I will be your angel, and when it is time for you to come, I will come get you.” Heartbreaking.

Emma was transferred to OKC and admitted to the PICU where a shunt was placed and39878975_1857360391239981_8600342818176630784_n an MRI was performed two days later. The next day, the tumor was removed during her craniotomy. After a preliminary diagnosis of medulloblastoma that was believed to be cancerous, it was confirmed two days later.  Treatment has consisted of a port placement, 30 proton therapy treatments, lumbar puncture, chemotherapy, MRI’s of the spine and head under general anesthesia, bone targeted therapies (BTT), bilateral tubes, and multiple hospitalizations. Since Emma’s tumor is so rare, she is currently in a trial where she gets 25% less chemo and proton therapy doses. She’s the only one participating in this study because of the rarity of the tumor.  Her results will help to change the way cancer is treated.

Getting through treatment has been hard on Emma. When she started treatment she was an outgoing sixth grader. Since losing her hair she’s become withdrawn from other children. Despite her difficulties she continues to work diligently on her school assignments and doing Epic Charter School.

Screen Shot 2019-03-29 at 2.24.44 PMAs a result of her diagnosis, Emma suffers from anxiety and depression, decreased fine motor skills and complete left sided deafness.  However, Megan says, “She has finally embraced beauty and that it comes in lots of different ways. She is funny and spirited – and yet will lay in my lap and cry often at night.” Emma can be described as ornery, witty and a quick thinker – and her mom wouldn’t have it any other way.

 

More about Medulloblastoma

Medulloblastoma is a cancerous (malignant) brain tumor that starts in the lower back part of the brain, called the cerebellum. The cerebellum is involved in muscle coordination, balance and movement.

Medulloblastoma tends to spread through cerebrospinal fluid (CSF) — the fluid that surrounds and protects your brain and spinal cord — to other areas around the brain and spinal cord. This tumor rarely spreads to other areas of the body.

For more information on Medulloblastoma please visit: https://www.acco.org/brain-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: