Special Needs Children: Leukemia

What Is Leukemia?

Leukemia refers to cancers of the white blood cells (WBCs), which are also referred to as leukocytes. Since there are different types of white blood cells, the types of leukemia also vary.  When a child has leukemia, large numbers of abnormal white blood cells are produced in the bone marrow. As they are defective, they cannot perform their function of protecting the body against diseases. As leukemia progresses, the cancer interferes with the body's production of other types of blood cells, including red blood cells and platelets, the fact that leads to anemia (low numbers of red cells) and bleeding problems, in addition to the increased risk of infection caused by white cell abnormalities.

Types of Leukemia

In general, leukemias are classified into acute (rapidly developing) and chronic (slowly developing) forms. In children, about 98% of leukemias are acute.  Acute childhood leukemias are also divided into acute lymphocytic leukemia (ALL) and acute myelogenous leukemia (AML), depending on whether specific white blood cells called lymphyocytes, which are linked to immune defenses, are involved. Approximately 60% of children with leukemia have ALL, and about 38% have AML. Although slow-growing chronic myelogenous leukemia (CML) may also be seen in children, it is very rare. [1]

Risk to Develop Leukemia

The ALL form of the disease most commonly occurs in younger children ages 2 to 8, with a peak incidence at age 4. But it can affect all age groups. Family history is another factor. Having a first-degree relative increases one’s risk of having the disease.[2] Children who have inherited certain genetic problems or diseases- such as Down syndrome – have a higher risk of developing leukemia. Children who are receiving medical drugs to suppress their immune systems after organ transplants are also susceptible to get leukemia.  Children who have received prior radiation or chemotherapy for other types of cancer also have a higher risk for leukemia, usually within the first 8 years after treatment. In most cases, neither parents nor children have control over the factors that trigger leukemia, although current studies are investigating the possibility that some environmental factors may predispose a child to develop the disease. Most leukemias arise from non-inherited mutations (changes) in the genes of growing blood cells. Because these errors occur randomly and unpredictably, there is currently no effective way to prevent most types of leukemia. To limit the risk of prenatal radiation exposure as a trigger for leukemia (especially ALL), women who are pregnant or who suspect that they might be pregnant should always inform their doctors before undergoing tests or medical procedures that involve radiation (such as X-rays)[3].

Symptoms of Leukemia

Symptoms usually develop fairly quickly in acute leukemias. Most cases of acute leukemia are diagnosed when the person visits his or her healthcare provider after becoming ill. Symptoms develop gradually in chronic leukemias and are generally not as severe as in acute leukemias. About 20% of people with chronic leukemia do not have symptoms at the time their disease is diagnosed.

Some symptoms of leukemia are due to deficiencies of normal blood cells. Others are due to collections of leukemia cells in tissues and organs. Leukemia cells can collect in many different parts of the body, such as the testicles, brain, lymph nodes, liver, spleen, digestive tract, kidneys, lungs, eyes, and skin —in effect, virtually every tissue site.[4]

The following symptoms of leukemia are common to all types:

• Unexplained fevers
• Frequent infections
• Night sweats
• Fatigue (feeling tired or washed out)
• Weight loss
• Easy bleeding or bruising  

Collection of leukemia cells in certain parts of the body may cause the following symptoms:

 

• Headache
• Confusion
• Balance problems
• Blurred vision
• Painful swellings in the neck, under the arms, or in the groin
• Shortness of breath
• Nausea or vomiting
• Abdominal pain and/or swelling
• Testicular pain and/or swelling
• Pain in the bones or joints
• Weakness or loss of muscle control
• Seizures

It is important to emphasize that the symptoms of leukemia are nonspecific. This means that they are not unique to leukemia but are common to a number of diseases and conditions. Only a medical professional is able to distinguish leukemia from the other conditions that cause similar symptoms.

Diagnosing Leukemia

Your child's doctor will perform a physical examination to check for any signs of infection, anemia, abnormal bleeding, and swollen lymph nodes. The doctor will also feel your child's abdomen to see if there is an enlarged liver or spleen because they can become enlarged with some cancers in children. In addition the doctor will ask you about your family’s medical history.

A CBC (complete blood count) to measure the numbers of white cells, red cells, and platelets in your child's blood will be needed. A blood smear will also be examined under a microscope to check for certain specific types of abnormal blood cells that are typically seen in patients with leukemia. Blood chemistries will also be checked.

Then, depending on the results of your child's physical exam and preliminary blood tests, your child may need the following:

• a bone marrow biopsy and aspiration, in which marrow samples are removed from the body (usually from the back of the hip) for testing
• a lymph node biopsy, in which lymph nodes are removed and examined under a microscope to look for abnormal cells
• a lumbar puncture (spinal tap), where a sample of spinal fluid is removed from the lower back and examined for evidence of abnormal cells. This will show whether the leukemia has spread to the central nervous system (brain and spinal cord).

Bone marrow or lymph node samples will be examined and additional testing will be done to determine the specific type of leukemia. In addition to these basic lab tests, cell evaluations are also generally done, including genetic studies to distinguish between specific types of leukemia, as well as certain features of the leukemia cells. Children will receive anesthesia or sedative medications for any painful procedures.[5]

Treatment of Leukemia

Certain features of a child's leukemia, such as age and initial white blood cell count, are used in determining the intensity of treatment needed to achieve the best chance for cure. Although all children with ALL are treated with chemotherapy, the dosages and drug combinations may differ.

To decrease the chance that leukemia will invade the child's central nervous system, patients receive intrathecal chemotherapy, the administration of cancer-killing drugs into the cerebrospinal fluid around the brain and spinal cord. Radiation treatments, which use high-energy rays to shrink tumors and keep cancer cells from growing, may be used in addition to intrathecal chemotherapy for certain high-risk patients. Children then require continued close monitoring by a pediatric oncologist, a specialist in childhood cancer.

After treatment begins, the goal is remission of the leukemia (when there is no longer evidence of cancer cells in the body). Once remission has occurred, maintenance chemotherapy is usually used to keep the child in remission. Maintenance chemotherapy is given in cycles over a period of 2 to 3 years to keep the cancer from reoccurring. Leukemia will almost always relapse (reoccur) if this additional chemotherapy isn't given. Sometimes the cancer will return in spite of maintenance chemotherapy, and other forms of chemotherapy will then be necessary.

Sometimes a bone marrow transplant may be necessary in addition to – or instead of – chemotherapy, depending on the type of leukemia a child has. During a bone marrow transplant, healthy bone marrow is introduced into a child's body.

Intensive leukemia chemotherapy has certain side effects, including hair loss, nausea and vomiting in the short term, and potential health problems down the line. As your child is treated for leukemia, your child's cancer treatment team will monitor the child closely for those side effects.

But with the proper treatment, the outlook for kids who are diagnosed with leukemia is quite good. Some forms of childhood leukemia have a remission rate of up to 90%; all children then require regular maintenance chemotherapy and other treatment to continue to be cancer-free. Overall cure rates differ depending on the specific features of a child's disease. Most childhood leukemias have very high remission rates. And the majority of children can be cured – meaning that they are in permanent remission – of the disease.

Emotional Aspects about Leukemia

Knowing that your child has cancer is not easy at all.  Parents often experience a mixture of shock, confusion, denial, anger, fear, anxiety, hope, guilt, sadness and grief.  It can sometimes lead to an increased or a decreased belief in God and the meaning of life.  After the first shock is over, parents should try to meet the new demands set by the situation of their child’s illness.  Important decisions regarding medical and financial issues have to be taken.  The stress of a seriously ill child often poses a strain on the marital relationship.  There will be years of illness, treatment and post-treatment maintenance in addition to many stressful situations that have to be skillfully handled.  This demands a lot of physical, emotional and psychological energy from the parents.  The presence of good friends, grand-parents or relatives can make things easier, as they provide a lot of support.  It is also important not to ignore the needs of the child’s brothers and sisters so that they wouldn’t develop negative feelings towards the sick child.  Moreover, despite the fact that the child with leukemia would need a lot of attention from the parents, he/she should not be overly pampered in order for him/her not to feel lost and confused.  Rules should not be ignored.

“When Mandy was diagnosed with leukemia, her parents talked with her healthcare team. They were encouraged to set some limits for Mandy, as they did before she got ill. Mandy's mother and father set clear rules for the household. They expected Mandy to follow these rules, as much as she was physically able. To maintain standards of discipline, Mandy's mom asked herself, "What would I have done in this situation before Mandy had cancer?" Setting limits in the home was reassuring to Mandy and offered normalcy in her world, which had changed dramatically when she was diagnosed. Mandy got the message that she was expected to follow the rules. Mandy felt that her parents expected her to get well, grow up and continue to be a responsible member of the family.”[6]

Parents should inform the sick child about his/situation using age-appropriate terms in order to maintain the trust between them. It also gives the child the opportunity to be aware of and address his/her perceptions about what is happening and why. This helps decrease some of the child's fears. Energy that would be wasted maintaining deception can be applied to the real problems of living with a life-threatening illness[7].

For more information on how to emotionally cope with childhood leukemia, please visit
http://www.leukemia-lymphoma.org