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These resources provide key information about 3 of the deadliest childhood cancers.

National Cancer Institute (NCI)

Childhood Cancers Information

Cancer.net

Oncologist-approved cancer information from the American Society of Clinical Oncology (ASCO)

OncoLink

Comprehensive childhood cancer information

Learn more about these 3 deadly childhood cancers

Neuroblastoma | Brain and other CNS tumors | Sarcomas

Neuroblastoma

Neuroblastoma, a cancer of the nerve cells, occurs in 1 out of every 100,000 children.

Neuroblastoma most often occurs in the adrenal glands (above the kidneys) in infants and children 5 years of age and younger.  It can spread to other areas, such as the lymph nodes, liver, bones, and bone marrow, if it is left untreated.

The cause of neuroblastoma is unknown.

Often, neuroblastoma has already spread at the time of diagnosis.  This is because the first symptoms are very general, including loss of appetite and tiredness.  Depending on location of the tumor, later stage symptoms can include:

  • Swollen or distended abdomen, constipation or diarrhea, breathlessness or difficulty in swallowing, and high blood pressure and an increased heart rate

In order to diagnose neuroblastoma, a biopsy, or sample of the tumor, must be taken.  The sample will be examined to determine whether the cells are neuroblastoma.  A urine test may also be able to determine whether neuroblastoma is present.  Additional tests might include:

  • X-ray
  • Computerized tomography (CT) scan
  • Magnetic resonance imaging (MRI) scan
  • Bone marrow and blood tests
  • Meta-iodo-benzyl guanidine (MIBG) scan
  • MIBG is a substance that is in neuroblastoma cells
To learn more about Neuroblastoma, visit:

Brain and other CNS tumors

Brain and other CNS tumors are the most common pediatric solid tumors and can appear at any age.

Sometimes these tumors can occur when there are genetic risk factors.  Otherwise, the exact cause is not necessarily known.

Symptoms of brain and other CNS tumors — which can be difficult to distinguish from symptoms of other conditions — often include:

  • Headache, vomiting, and irritability

Additional symptoms can include:

  • Vision problems, speech problems, alertness and concentration problems, clumsiness, difficulty with coordination, trouble walking, and seizures

Signs of brain and other CNS tumors can include:

  • Fontanelles, or depressions in the head, and change in head size

Regular well visits are an important way of identifying the signs and symptoms of brain and other CNS tumors.  This is especially in infants or very young children in whom it may be difficult to recognize typical symptoms.

Brain and other CNS tumors are diagnosed using some or all of the following tests:

  • Magnetic resonance imaging (MRI) scan
  • Computerized tomography (CT) scan
  • X-ray
  • Blood tests
  • Electroencephalogram (EEG)
To learn more about Brain and other CNS tumors, visit:

Sarcomas

Ewing’s sarcoma

Ewing’s sarcoma is a cancerous bone tumor that occurs in children and young adults.  It most commonly appears in the limbs (arms and legs), pelvis, or chest.  However, it can appear anywhere in the body, such as in the soft tissue near bones.

Ewing’s sarcoma most often emerges during puberty, when there is rapid bone growth, though it can happen anytime during childhood.
More common symptoms include:

  • Bone pain where the tumor is present, swelling near the tumor, and tenderness to the touch

Other signs and symptoms can include:

  • Fever and a bone break after a minor fall or accident

In order to diagnose Ewing’s sarcoma, the following tests may be performed:

  • X-ray of the bone where pain is present
  • X-ray of the chest
  • Computerized tomography (CT) scan
  • Magnetic resonance imaging (MRI) scan
  • Bone scan (scintigraphy)
  • Biopsy

Osteosarcoma

Osteosarcoma, the most common cancerous bone tumor in children, begins at the ends of the bones.  This is where new bone tissue develops.  Osteosarcoma most often emerges in the bones of the thigh, upper arm, and shin.  However, it can occur in any part of the body.

Osteosarcoma commonly develops during puberty (average age, 15 years) when there is rapid growth.

In rare cases, osteosarcoma is a genetic condition.  In general, however, its cause is unknown.

The most common symptom is bone pain where the tumor is present.  At first, the pain may be inconsistent.  Though over time, the pain may eventually be consistent and severe.

Other signs and symptoms include:

  • Swelling and limitation of motion, warmth and redness near swelling, limping, pain upon lifting arms, and a bone fracture seemingly without cause

To diagnose osteosarcoma, the following tests may be performed:

  • X-ray
  • Computerized tomography (CT) scan
  • Magnetic resonance imaging (MRI) scan
  • Biopsy
    • This should be completed by an orthopedist with cancer surgery experience, so that the procedure does not affect future operations
  • Bone scan
  • CT scan of the lungs
  • Blood tests 

Rhabdomyosarcoma

Rhabdomyosarcoma is a type of soft tissue cancer that is most often diagnosed in children under 6 years of age, but it can occur at anytime during childhood.  It most commonly begins in these areas of the body:

  • Head and neck, extremities, arms, elbows, legs, knees, thighs, feet, shoulders, trunk, abdominal wall, breast, chest wall, bones of the eye socket or optic nerves, pelvis, and gastrointestinal tract

Children who are exposed to chemicals and chemical pollution or who have fathers that smoke cigarettes experience a higher incidence of this type of cancer.

Rhabdomyosarcoma can occur in children with a genetic predisposition to Li-Fraumeni syndrome.

In general, symptoms are related to the area of the body where the tumor is present.  This can include numbness, pain, protrusion, or impairment of the affected part of the body.

Rhabdomyosarcoma may be diagnosed with the following tests:

  • Biopsy
  • Computerized tomography (CT) scan
  • Ultrasound
  • Magnetic resonance imaging (MRI) scan
  • Blood and bone marrow tests
To learn more about Sarcomas, visit:

Empowerment

Empowerment

SKC is focused solely on bringing promising therapies to children who need it. However, based on our own experiences, we want to share with you some helpful ways to empower yourself through education, support, and management of your child's care.

Take an active role in finding the best care for your child

Learning everything you can about immediate care.

To arrest the development of cancer, there are standard "up-front" protocols at almost every children’s hospital or cancer center in the U.S. These up-front treatments usually combine several rounds of chemotherapy and potentially surgery to remove a solid tumor.

To learn more about standard up-front treatments,  www.curesearch.org/customize.aspx.

Relying on the guidance of a specialist.

In many cases, a pediatric oncologist will manage the medical care of your child. It is helpful to build a good relationship with this physician and potentially other specialists where your child is being treated. You may want to work with them directly to manage the care of your child. You’ll probably be asking a lot of questions, following up on treatment plans, and communicating openly about every consideration in the therapeutic plan for your child.

Being both the Manager and Caregiver of your child.

You’ll encounter many supportive and guiding people on this journey. However, as a parent, you will most likely be the one who has the greatest sense of urgency and interest invested in your child. This may mean that, beyond being a parent, your efforts will become a full-time job; you’ll take on the role of both Manager and Caregiver in the quest to secure the best care for your child.

Building a vast Network of Care.

Your network can include a variety of people whom you can rely on for guidance and support.

To see the list of all centers in the U.S. who treat children with cancer, www.curesearch.org/resources/cog.aspx

Pediatric Oncologists

You may wish to seek out the pediatric oncologists who specialize in your child’s specific type of pediatric cancer (there are 11 types of pediatric cancer). Or you may feel more comfortable relying on the team of doctors at the center where your child is receiving care.

Parent - in person

Other parents can be a vital addition to your Network of Care. It’s likely you’ll encounter other parents every day at your own cancer center. They can be one of the best sources of information, as well as support.

Parents - online

You can extend your Network of Care even further by establishing relationships with other parents online. A website where you can do this is a special list-serve that provides a centralized place for parents to interact.

To sign-up for this list-serve, www.acor.org/mailing.html

Staying organized and keeping good records.

Your records can provide you with information that is invaluable to your child’s care.

Here are some suggested ways to stay organized:

  • Use a large 3-ring binder to hold printouts of daily reports, copies of scans, copies of your child’s treatment protocol(s), and research that you have done on potential therapeutic options
  • Keep a daily diary of miscellaneous notes and observations that are relevant to your child’s daily care

Aiming to get your child into remission.

After the upfront treatment is concluded, the journey can take numerous paths. Here are some of the potential outcomes:

  • Refractory means the cancer may have diminished but has stopped responding to the current treatment and may not diminish any further with that treatment
  • Remission also referred to as No Evidence of Disease (NED) means that the treatment has eliminated all or almost all of the cancer
  • Relapse or Recurrence is a return of the cancer after being in remission

An important thing parents can do as a Manager and Caregiver is to become empowered. As parents one of our most important jobs in life is to work hard to provide the best possible outcomes for our children.

Empowerment

SKC is focused solely on bringing promising therapies to children who need it. However, based on our own experiences, we want to share with you some helpful ways to empower yourself through education, support, and management of your child's care.

Take an active role in finding the best care for your child

Support

SKC understands that families with childhood cancer will face many challenges and obstacles.  It is important to be connected to others who are going through the same experience — both for empowerment as a Manager of your child’s care and for support.  Financial and logistical support are also important to many families.  Fortunately, there are many organizations that exist to provide support by offering services ranging from financial assistance to appearance and survivorship concerns.  

Searching the Internet is an amazing way to find information on current and potential future therapies.  Knowing more about these therapies will not only enlighten you, it will aid your discussions with your child’s pediatric oncologist.

As the Internet is an ever-changing resource, SKC cannot guarantee the content standards of the following sites.  All of the links on the SKC website are provided for informational purposes only.  SKC does not endorse any of the services or opinions of the organizations and bears no responsibility for the accuracy, legality, or content of the external websites or their subsequent links.

Support and Services

  • CaringBridge

    Create a free personal blog for your child to update your community of family and friends and provide a place for them to reach out to you.

  • The ACOR list-serve

    An online community for parents of children with cancer to discuss therapeutic options, ideas, encouragement, and support. There is a separate list-serve for the different types of childhood cancer.

  • CancerCare

    National organization that provides free, professional support services to anyone affected by cancer. Financial Assistance is also offered.

  • Friends of Karen

    Provides direct financial assistance with expenses that families cannot afford due to the loss of income as a result of their child’s illness.

  • Ronald McDonald House

    Provides a home away from home for families of sick children receiving treatment at nearby hospitals. Families are requested to make a donation from $5 to $25 per day, depending on the chapter.

  • Michael's Way

    Aims to help families of childhood cancer cope with expenses that occur as a result of the child’s illness.

  • A Mother's Kiss

    Provides emotional and financial support to families within New York's Metro area and Long Island.

  • United Healthcare Children's Foundation

    Helps children by providing a medical grant that is to be used for medical services not covered or not completely covered by commercial health benefit plans.

  • Air Charity Network (ACN)

    Matches patients with medical needs to free flights and other travel resources.

  • Angel Flight

    Helps arrange free flights to people with medical needs.

  • Corporate Angel Network

    Helps families arrange free flights to treatment centers by using the empty seats on corporate aircrafts flying on routine business.

  • LifeLine Pilots

    Facilitates transportation for on-going medical treatments, diagnosis and follow-up care through pilot donation of flight expenses and time.

  • The Hole in the Wall Gang Camp

    A camp started by Paul Newman that provides year-round activities for campers and other seriously ill children and their siblings at Camp and in their own communities.

  • Camp Sunshine

    A beautiful retreat available at no-cost for children with cancer and their families.

  • Planet Cancer

    An online social networking community that connects young adults with cancer.

  • American Brain Tumor Association (ABTA)

    Provides information and support to brain tumor patients and their families. Features a caregiver section on their website.

  • HOSTanELF

    Provides elves at holiday time for children undergoing cancer treatment, while at the same time donating money to find a cure for childhood cancer.

  • Flashes of Hope

    Provides families with free uplifting portraits of their children who are battling life-threatening illnesses. Pictures are taken by award-winning photographers.

  • Songs of Love

    Offers free personalized songs for children and teens that are facing medical or emotional hardships.

  • Know Cancer

    Know Cancer is dedicated to connecting, educating, and empowering all people affected by the many forms of cancer.

  • Red Dog Foundation

    Red Dog Foundation helps families of pediatric cancer patients  with out of pocket expenses they incur, specifically parking fees they face daily while bringing the child for treatment or visiting a child in a NYC hospital.

  • Francis Pope Memorial Foundation

    Providing love, hope and support to families of children with cancer, facing unthinkable circumstances, so they can focus on their child's recovery.

  • Candlelighters

    For more than 20 years, Candlelighters has supported the needs of families facing childhood cancer, providing emotional, educational and practical support to families of children with cancer.

Clinical Trials for Therapy

Quick Links

Support Links

  • References:  1.  Johns Hopkins Medicine. The Scout. Available at: http://www.jhscout.org//types/neuroblastoma.cfm. 2.   Johns Hopkins Medicine. The Scout. Available at: http://www.jhscout.org//types/brainspinaltumors.cfm. 3.  Johns Hopkins Medicine. The Scout. Available at: http://www.jhscout.org//types/ewingssarcoma.cfm. 4.  Johns Hopkins Medicine. The Scout. Available at: http://www.jhscout.org//types/osteogenicsarcoma.cfm. 5.  Johns Hopkins Medicine. The Scout. Available at: http://www.jhscout.org//types/rhabdomyosarcoma.cfm.