Helping Your Child Cope
Helping Siblings Cope
Coping Strategies for Parents
Treatment
Survivorship
About Leukemia
About Lymphoma
About Myelodysplastic Syndromes
About Juvenile Myelomonocytic Leukemia
Facts and Statistics
We're Here to Help
Free Publications
The Blood Cancer Resource Directory Families face uncertainty when they are told that their child has leukemia, lymphoma or a myelodysplastic syndrome (MDS). It is a time filled with new people and situations, worries and change. It may help to learn that, because of new and better therapies, cancer survival rates for children have improved significantly during the last several decades. Physicians, nurses and researchers continue to search for the causes of childhood leukemia, lymphoma and MDS to develop better treatments, and to tailor therapies to decrease the toxic effects of therapy. Return to top Helping Your Child Cope Children, regardless of age, are usually aware when their health is causing concern for their parents. Your child may experience a variety of emotions in quick succession. Feelings such as anger, guilt, fear, anxiety and sadness are all common reactions. Click here for some ideas to help your child cope with the initial diagnosis. At times, parents want to shield their child from information about the illness and treatment. However, providing your child with age-appropriate information will help him or her to build trust in both you and the treatment team, and to feel comfortable talking about fears and concerns. Read more... Return to top Helping Siblings CopeSiblings of the child with leukemia, lymphoma or MDS are also affected by the cancer experience. And although sibling reactions of some kind are inevitable, you can help by making sure that they receive your attention. It is important for siblings to have the opportunity to talk about how the experience is affecting them and other members of the family. For some ideas about helping siblings to cope, please click here. Return to top Coping Strategies for ParentsThroughout your child's illness, you will need to find ways to comfort your child and help him or her to cooperate with treatment. You may also need to explain what is happening to your other children, answer relatives' questions and perhaps make alternate arrangements for work and child care. All along the way, you will be coming to terms with your own feelings and choices. None of this is easy. For some suggestions to help manage some of the feelings, emotions and reactions
that you may experience, please click here. Return to top TreatmentChildren with leukemia, lymphoma or MDS may face long periods of treatment. The type and length of therapies that your child receives to treat his or her illness depends on several factors, including - The type of leukemia, lymphoma or myelodysplastic syndrome
- Cytogenetic risk factors (genetic changes in the cancerous cells)
- The child's age and overall health.
After treatment, most children can expect to have full and productive lives. Many survivors return to school, attend college, enter the workforce, marry and become parents. Return to top | |
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Survivorship
Treatments for childhood cancer continue to evolve, in part because of the risk of long-term effects of cancer therapy. To minimize the risk
- The lowest effective doses of drugs and radiation are used to treat cancer and
- Research is underway to understand
- Why some survivors develop treatment related long term effects
- How long-term effects of therapy effect quality of life.
Anna T. Meadows, M.D., an oncologist, Children's Hospital of Philadelphia, is leading the LLS's initiative to fund research to discover and eliminate the causes of cancer treatment's late effects.
Special Healthcare Needs. Childhood cancer survivors have special long-term health care needs. Regular medical follow-up is encouraged to
- Enable doctors to assess the full effect of therapy
- Detect and treat disease recurrence
- Identify and manage long-term or late effects.
Survivors need physical examinations yearly or more often. Regular examinations include screening for cancer and for long-term and late effects of treatment.
It is important to know that
- Survivorship programs that focus on life after cancer are at several major hospitals around the country.
- Some treatment centers have follow-up clinics that provide a multidisciplinary approach to monitoring and supporting cancer survivors.
- Some follow-up clinics specialize in pediatric cancer survivors.
- Survivors do not necessarily need a cancer specialist for routine checkups and screening, but they do need to see doctors who understand their previous treatment and its risks.
- Coordination between specialists and primary care physicians is essential to provide the best care.
The Children's Oncology Group has established Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers
(www.survivorshipguidelines.org).
The National Comprehensive Cancer Network (NCCN) has incorporated limited
recommendations for surveillance and management of common issues facing survivors into their treatment guidelines (www.nccn.org).
Two sources for lists of survivor follow-up clinics are:
The Survivors-follow up clinics list from the Ped-Onc Resource Center, a Web site for parents, friends, and families of children who have or had childhood cancer.
The National Center for Cancer Survivorship (NCCS) Resource Guide. Select "Long-Term Survival Clinics" from the "Cancer-Related Information" drop down menu and select "Any" or the state you want to search. For best results, search in only these two categories and select "Any" for the other categories.
For more information about specific programs see Resources for Children and Families in The Blood Cancer Resource Directory.
About Leukemia
Leukemia is the general name for four different types of blood cancers. Read more...
Signs and symptoms, Diagnosis and Treatment for...
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About Lymphoma
Lymphoma is the general name for a group of cancers that originate in the lymphatic system. Hodgkin lymphoma and non-Hodgkin lymphoma are the two main types of lymphoma. Read more...
Signs and symptoms, diagnosis, treatment and more for...
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About Myelodysplastic Syndromes
Myelodysplastic syndromes (MDS) is a term that is used to describe a group of cancers characterized by abnormal blood cell formation. This disease accounts for less than 5 percent of all blood cancers in children younger than 14 years. Symptoms of MDS may include fatigue, infection and unexplained bleeding, but about 20 percent of patients have no symptoms.
MDS, which can evolve to acute myelogenous leukemia, is made up of several subtypes. Refractory cytopenia (RC) is the most common MDS subtype in children. About half of all children with MDS have the RC subtype. A careful clinical assessment is needed before an RC diagnosis can be made.
For more information on childhood MDS, including treatment information, please visit the Childhood MDS section of the MDS page.
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About Juvenile Myelomonocytic Leukemia
Juvenile Myelomonocytic Leukemia (JMML) is an uncommon blood cancer that is classified by the World Health Organization (WHO) as a "mixed myelodysplastic/myeloproliferative disease."
JMML accounts for about 1.5 percent of childhood leukemia cases. It affects mostly infants or children younger than 6 years. Symptoms of JMML may include paleness, fever, rash, enlarged liver, enlarged spleen, enlarged lymph nodes, developmental delays, decreased appetite, irritability and dry cough.
For more information on JMML, including treatment information, please visit the JMML page and read, print or order the free LLS fact sheet Chronic Myelomonocytic Leukemia and Juvenile Myelomonocytic Leukemia.
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Facts and Statistics
Incidence rates by age differ for each of the leukemias. The leukemias represented 27 percent of all cancers occurring among children younger than 20 years from 2000-2004. Read more...
The incidence of Hodgkin lymphoma among people under 20 years of age was 1.1 per 100,000 people in 2004. Read more...
In the United States, about 10,400 children under the age of 15 are expected to be diagnosed with cancer in 2007. Read more...
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We're Here to Help
The Leukemia & Lymphoma Society (LLS) is here to help you with information as well as national and community services. LLS provides financial support, teleconferences and free publications for children, parents and educators.
If you would like to speak to an information specialist, please contact the Information Resource Center (IRC). The IRC is staffed with social workers and health educators who offer callers up-to-date, accurate disease-related information.
The LLS network of chapters is located throughout the United States and Canada. Click here to locate a chapter in your area.
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Individuals and organizations can order free publications, including:
 Stem Cell Transplant Coloring Book
Download PDF Order Online | 
Pictures of My Journey Download PDF Order Online |
 Coping With Childhood Leukemia and Lymphoma
Download PDF
Order Online |  Learning & Living With Cancer
Download PDF Order Online |
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The Blood Cancer Resource Directory
Click here for other helpful resources.
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