Childhood Leukemia FAQ

Last updated January 2000

This FAQ was written by Nancy Keene, whose daughter is an eight-year survivor of high-risk ALL. Material in this FAQ was adapted from Nancy's book, Childhood Leukemia: A Guide for Families, Friends, and Caregivers, 2nd edition, copyright 1999 by O'Reilly & Associates, Inc. For book orders/information, call (800) 998-9938. This FAQ may be freely printed and distributed for noncommercial use as long as the above source is included. The information in this FAQ is meant to educate and should not be used as an alternative for professional medical care. If the information in the FAQ raises any questions or concerns, please discuss them with your child's physician. Corrections and comments regarding this FAQ should be sent to leukfaq@oreilly.com.

Index of Questions

A. General Questions

B. Implanted Catheters

C. Clinical Trials

D. Pain Management

E. Side Effects from Treatment

F. Sources of Support

Questions and Answers

A. General Questions

A.1. What is leukemia?
The word leukemia literally means "white blood." Leukemia is the term used to describe a variety of cancers that begin in the blood-forming tissues of the bone marrow, the spongy material that fills the long bones in the body and produces blood cells. In leukemia, the bone marrow makes an overabundance of diseased white cells that cannot perform their usual function of fighting infection.

When the leukemic cells begin to fill the marrow, production of healthy red cells, platelets and white cells decreases. As the number of normal cells declines, symptoms appear. Low red cell counts cause fatigue and pale skin. Low platelet counts may result in bleeding and bruising. If mature white cells are crowded out, your child will have little or no defense against infection.

A.2. Why did my child get leukemia?

Approximately 3,250 children in the United States are diagnosed with leukemia each year. The exact cause of childhood leukemia is a mystery, but certain factors are known to increase the risk of developing the disease. Children with chromosomal abnormalities such as Down's syndrome or Franconi's anemia have a higher risk of developing leukemia than the general population. Exposure to large amounts of ionizing radiation (such as that released by the Chernobyl accident in the Ukraine) and toxic chemicals (including chronic exposure to benzene) may increase susceptibility to leukemia. It is thought that a complex interaction among genetic, environmental, immunologic, and possibly viral factors predispose individuals to leukemia. The most important point for parents to remember is that at present there is no way to predict or prevent leukemia.

A.3. Where should my child be treated?

Childhood leukemias are among the most curable of all childhood cancers. To receive the best available care, it is essential that your child receive treatment at a pediatric medical facility with extensive experience treating childhood leukemias. The intense treatment for leukemia requires the skills of board-certified hematologists/oncologists, pediatric surgeons, radiation oncologists, pediatric oncology nurses, rehabilitation specialists, and pediatric social workers. These teams of trained professionals ensure that children receive state-of-the-art treatment, supportive care, and emotional support for the months or years of treatment.

A.4. What is acute lymphoblastic leukemia (ALL)?

ALL is the most common type of childhood cancer. Approximately 75 percent of the children with leukemia have ALL.

Acute lymphoblastic leukemia is a disease in which the body produces too many immature white cells called lymphocytes. Lymphocytes normally mature and become the body's infection fighters. In ALL, the lymphocytes remain immature and become too numerous. They crowd out healthy white cells (which fight infection), red cells (which carry oxygen to all parts of the body) and platelets (which stop bleeding by forming clots). ALL occurs in both adults and children, and progresses rapidly. To obtain detailed information on childhood ALL, call the Cancer Information Service at (800) 4-CANCER.

A.5. How is ALL treated?

ALL is considered to be one of the most curable forms of childhood cancer. Treatment for ALL should begin within days of diagnosis and requires aggressive supportive care. The goal of treatment is to destroy all cancer cells as quickly as possible.

The mainstay of treatment for ALL is chemotherapy—the use of various drugs to treat disease. In some cases, radiation to the brain and spinal cord is also administered. Bone marrow treatment for ALL is generally only used if the child relapses.

For average-risk patients, treatment is typically divided into several phases: induction, central nervous system (CNS) prophylaxis, consolidation, delayed intensification(s), and maintenance. Induction is the most intensive part of treatment. Your child will be given three or four chemotherapy drugs (methotrexate, vincristine, prednisone, asparaginase, and sometimes daunomycin) during induction. Ninety-five percent of children who receive state-of-the-art treatment enter complete remission.

In most cases of childhood ALL, leukemic cells are not found in the cerebrospinal fluid. However, prior to using drugs and/or radiation to the CNS, the brain was a frequent relapse site. Because a blood/brain barrier exists which prevents chemotherapy from crossing into the CNS to destroy any lurking cancer cells, chemotherapy drugs are injected directly into the cerebrospinal fluid. This is called intrathecal medication. After induction, new combinations of different drugs are given to prevent the reappearance of leukemia. Maintenance therapy consists of daily low-dose chemotherapy for two to three years to kill any remaining cancer cells. This portion is less toxic and easier to tolerate than induction and consolidation.

A.6. What is acute myeloid leukemia (AML)?

Acute myeloid leukemia (AML) is cancer of the granulocytes—a type of white cell. AML accounts for approximately 15 percent of all cases of childhood leukemia. There are seven different classifications of AML based on the type of granulocyte involved.

Granulocytes normally mature and become some of the body's infection fighters. In AML, the granulocytes remain immature and become too numerous. They crowd out healthy white cells (which fight infection), red cells (which carry oxygen to all parts of the body) and platelets (which stop bleeding by forming clots). AML occurs in both adults and children, and progresses rapidly. To obtain detailed information on childhood AML, call the Cancer Information Service at (800) 4-CANCER.

A.7. How is AML treated?

The primary treatment for AML is chemotherapy, frequently followed by bone marrow or stem cell transplantation in first or second remission. Radiation of the brain is used if the cancer has spread to the brain, or, in some cases, to prevent the growth of cancer in the brain. Biological therapies are used in some clinical trials to shorten the length of time when white counts are low (neutropenia).

The treatment for children just diagnosed with AML begins with induction in which several different drugs are used to destroy as many cancer cells as possible to achieve remission. Postremission therapy follows induction and consists of two parts: postremission consolidation and postremission intensification. Your child may receive either one or both of these portions of treatment. The purpose of postremission treatment is to use different drugs to kill any remaining cancer cells.  Bone marrow or stem cell transplantation (BMT/SCT) are being used increasingly to treat children with AML in first remission. High-dose chemotherapy, with or without total body radiation, is used to destroy the child's bone marrow and any remaining cancer cells. Healthy, matched marrow is taken from another person, usually a family member, and is dripped into the patient's blood intravenously. The new marrow migrates to the bones and replaces the destroyed marrow. This is called an allogeneic transplant. Nearly 60 percent of children with AML with matched donors who undergo a BMT in first remission experience remissions in excess of three years without severe graft-versus-host disease.

Another method sometimes used for children without a matched, or closely matched, donor is called autologous BMT. In this type of transplant, marrow is removed from the child, may be treated chemically to remove all leukemia cells, and frozen. After the child's own diseased marrow has been destroyed, the frozen marrow is thawed and returned to the patient intravenously. The data so far indicate that this is no better than conventional chemotherapy and is inferior to matched allogeneic bone marrow transplantation. The role of unrelated (from non-family members) BMTs or cord blood BMTs in treating childhood AML in first remission has not yet been established and is currently being studied. It is often used to treat AML in second remission or AML that occurs as a second cancer.

A.8. What is chronic myelogenous leukemia (CML)?

CML is rare in children, accounting for less than five percent of all childhood leukemias. This disease is most common in adults, but occasionally is diagnosed in older boys and girls. It is characterized by a very large spleen, a high white count of mostly neutrophils and other types of granulocytes, and a high platelet count. Other symptoms of CML are fatigue, weakness, headaches, irritability, fevers, night sweats, and weight loss. Some patients have no symptoms, and the cancer is diagnosed after a routine blood test done for other reasons. There is no severe anemia or tendency to bleed.

In over 90 percent of patients with CML, analysis of the cells of the bone marrow shows a genetic abnormality called the Philadelphia chromosome. This chromosome contains a "translocation" or swap of genetic material involving chromosomes 9 and 22, abbreviated as t(9;22).

Despite its name, CML can progress rapidly, but it generally has:

• A chronic phase (less than 5 percent blasts in the peripheral blood or bone marrow), which can last several years.

• An accelerated phase (greater than 5 percent but less than 30 percent blasts in the peripheral blood or bone marrow).

• A blastic phase (greater than 30 percent blasts in the peripheral blood or bone marrow). When more than 30 percent blasts are present and the child or teen has fever, fatigue, and enlarged spleen, it is called blast crisis.

A.9. How is CML treated?

The goal of initial treatment is to lower the white count and reduce the size of the spleen. This is accomplished by taking oral medications, usually either hydroxyurea or busulphan (also called Myleran). Medicines such as hydroxyurea, busulfan, and the biologic agent interferon alpha may be used to delay disease progression. The average length of the chronic phase of CML is three years, although some patients have remained in this phase for up to ten years.

If the spleen does not shrink after treatment with drugs or radiation, surgical removal may be required.

Although chemotherapy and interferon alpha slow the progress of CML, the best hope for cure is bone marrow transplantation. The highest cure rates occur when the patient is transplanted during the chronic phase with marrow from an identical twin, HLA-identical family member, or HLA-identical non-family donor.

A.10. What is chronic myelomonocytic leukemia (also called juvenile CML)?

Chronic myelomonocytic leukemia (CMML, also called juvenile CML) usually strikes children under five years of age. The symptoms are similar to that of the acute leukemias: pale skin, bruising, fatigue, headaches, sweating, and recurrent infection. Also usually present are enlarged lymph nodes, an enlarged spleen and liver, and a low platelet count. Unlike CML, CMML does not have a chronic phase. Once diagnosed, progressive deterioration usually occurs.

Because chemotherapy is not generally a successful treatment for juvenile CML, bone marrow or stem cell transplantation is the best hope for cure. However, chemotherapy is sometimes used to get the disease under control while preparing for transplant.

A.11. What is a blast?

Blast is a short name for an immature white blood cell such as lymphoblast, myeloblast, or monoblast. Normally, less than five percent of the cells contained in healthy bone marrow at any one time are blasts. Normal blasts mature into healthy, functioning white cells, and are not usually found in the bloodstream. Leukemic blasts remain immature, multiply continuously, provide no defense against infection, and may be present in large numbers in the blood stream.

A.12. What is remission?

Complete remission occurs when all signs and symptoms of leukemia disappear and abnormal cells are no longer found in the blood, bone marrow, and cerebrospinal fluid. The normal number of healthy blasts (5 percent or less—see A.8 above) will be present in the bone marrow.

A.13. Why doesn't treatment end when my child enters remission?

When all signs and symptoms of cancer are gone and abnormal cells cannot be found in the blood or bone marrow, the child enters remission. This can occur as early as one week after treatment begins. The child must then undergo months or years of additional treatment. Early clinical trials have shown that children who stop treatment after entering remission soon relapse (the cancer returns). This occurs because there are some cancer cells remaining despite the intensive treatment and apparent remission. It is important to complete treatment to ensure the best chance for a cure of the disease.

A.14. How can I get the newest information on treatment options?

The National Cancer Institute develops physician data queries (PDQ) that are up-dated frequently by the top experts in oncology. These free bulletins explain the disease, state-of-the-art treatments, and ongoing clinical trials. There are two versions available: one for patients that uses simple language and contains no statistics, and one for professionals that is technical, thorough, contains statistics, and includes citations to the scientific literature. To obtain the PDQ for your child's disease, contact the NCI. By phone, call (800) 4-CANCER and ask for the PDQ for pediatric ALL, AML, or CML (chronic myelogenous leukemia). You will have to ask for the professional PDQ specifically; otherwise they will just send the patient version.

If you have been told any statistics on your child's survival chances or have read the statistics contained in the professional version of the PDQ's, consider reading a balanced and humane essay on how to interpret them. Stephen Jay Gould, an evolutionary biologist and wonderful writer, is a long term-survivor of a rare and deadly cancer. He explains how to interpret statistics and use them for your benefit in The Median Isn't the Message.

B. Implanted Catheters

B.1. What are implanted catheters?

Implanted catheters are tubes put into the body during a short surgery to allow entry into the large veins without starting an IV. They prevent both the pain and fear caused by repeated intravenous sticks and possible tissue damage by leakage of corrosive chemotherapy into tissue around the IV site. The possible complications from using implanted catheters are infection, clots, and kinks in the catheter.

There are two main types of catheters: external and subcutaneous port. An external catheter is a long flexible tube with one end in the right atrium of the heart and the other end outside the skin of the chest. There are several types of external catheters commonly used in children, including the Broviac and Groshong, but the one most widely used is the Hickman. The subcutaneous catheter differs from the external in that it is completely under the skin and needs to be stuck with a needle ("accessed") to be used. There are many types of subcutaneous ports on the market, but the one most widely used in children is the Port-a-cath.

B.2. What is a Hickman catheter?

A Hickman catheter is a long flexible tube with one end in the right atrium of the heart and the other end outside the skin of the chest. Chemotherapy drugs, transfusions, and IV fluids are put into the end of the tube hanging outside the body, so the child has no needle pokes, pain, or fear. Blood samples can also be drawn from the catheter.

B.3. What is a Port-a-cath?

A Port-a-cath is one type of subcutaneous (under the skin) catheter. The Port-a-cath differs from the Hickman in that it is completely under the skin. A small metal chamber with a rubber top is implanted under the skin of the right chest. A catheter threads from the chamber (also called portal) under the skin, into a vein near the collarbone, and then to the heart. Whenever the catheter is needed to draw blood or for a transfusion, a needle is inserted by a nurse through the skin and into the rubber top of the portal.

B.4. Which, if any, catheter will be best for my child?

There is no right or wrong choice for each unique child. Consider the table below, talk to the other families on the oncology floor, discuss the options with the nursing staff, then decide.

C. Clinical Trials

C.1. What is a clinical trial?

A clinical trial is a research study that uses humans to answer specific scientific questions. A trial can test a promising new treatment, improve the results or reduce the toxicity of known treatments, or fine-tune existing treatments. Seventy-five percent of children with cancer are enrolled in clinical trials throughout their cancer experience.

The enormous improvements in treating childhood leukemia in the last few decades are the direct result of clinical trials. They offer the most up-to-date treatment available. To find out about ongoing clinical trials, call (800) 4-CANCER or visit the NCI web site.

C.2. What is a protocol?

A protocol is a recipe for treating cancer. Just like a recipe for baking a cake, it has ingredients that go in at certain times and in certain ways in order for the recipe to have the best chance for success. The protocol document lists the drugs, dosages, and tests for each segment of treatment. If your child is enrolled in a clinical trial, the protocol will outline the treatment for each arm. For instance, the first page of the protocol for the child with intermediate-risk ALL might list the following for the induction period: two bone marrow aspirations, four doses of vincristine, nine doses of asparaginase, two intrathecal doses of methotrexate, and twenty-seven oral doses of dexamethasone. It will state the dates and dosages for each chemotherapy drug and procedure.

The protocol is only a guide, however. It almost always has to be modified in response to each child's blood counts and individual reactions. The doses for some children are continually adjusted throughout their treatment for leukemia.

D. Pain management

D.1. Are there ways to prevent pain and fear when my child has medical procedures?

Yes, there are. The goal of pediatric pain management should be to minimize suffering while performing a successful procedure. The two methods used to achieve this goal are psychological (using the mind) and pharmacological (using drugs).

D.2. How can the mind be used to lessen fear and pain during procedures?

Other methods that can be successfully used to prepare children for procedures are hypnosis (needs to be taught by a professional), imagery (requires practice to be effective), and distraction. Hypnosis is a well-documented method for reducing discomfort during painful procedures. If performed by a qualified health care professional (psychologist, physician, nurse, social worker, or child life specialist), hypnosis can help your child control painful sensations, release anxiety, and diminish pain. The professional helps guide children or teens into an altered state of consciousness that helps to focus or narrow attention.  Imagery is a way to deliberately create a mental image of sights, sounds, tastes, smells, and feelings. It is an active process that helps children or teens feel as if they are actually entering the imagined place. Focusing on pleasant images allows the child to shift attention from the pain. It can also allow the child to actually alter the experience of pain, which simultaneously gives the child control and diminishes pain. Ask if the hospital has someone to teach your child this very effective technique.   Distraction can be used successfully with all age groups, but it should never be used as a substitute for preparation. Babies can be distracted by colorful, moving objects. Parents can help distract preschoolers by showing picture books or videos, telling stories, singing songs, or blowing bubbles. Many youngsters are comforted by hugging a favorite stuffed animal. School-age children can watch videos or TV, or listen to music. Several institutions use interactive videos to help distract older children or teens. Other adjunctive therapies that are used successfully to help deal with medical treatments are relaxation, biofeedback, massage, and acupuncture. Ask the hospital's child life specialist, psychologist, or nurse to discuss and practice different methods of pain management with you and your child. An excellent guide on how to teach children simple yet effective techniques such as guided imagery, deep breathing, and meditation is Stress-Proofing Your Child: Mind-Body Exercises to Enhance Your Child's Health by Sheldon and Sheila Lewis (Bantam Books, 1996).

D.3. What drugs can be used to help during procedures?

Some pediatric oncology clinics offer sedation or anesthesia for painful procedures; others do not. Sometimes anesthesia is offered only for infants and overwhelmingly anxious children. If your child is distressed by painful procedures, it is important to be a strong advocate for relief.

Two topical anesthetics are widely used for pediatric procedures. EMLA cream, available by prescription, is put on the skin one to two hours prior to painful procedures such as spinal taps, bone marrow aspirations, port accesses, and finger sticks. Ethyl chloride spray is used immediately before the procedure to anesthetize the surface skin.

Other drugs for sedation and/or general anesthesia are given intravenously. These drugs include:

• Valium or versed plus morphine or fentanyl. Valium and versed are sedatives which are used with pain relievers such as morphine or fentanyl. These drugs can be given in the clinic, but due to the possibility of slowed breathing, expert monitoring is required and emergency equipment should be present. The combination of a sedative and a pain reliever will result in your child being awake but sedated. The child may move or cry, but will not remember the procedure.
  

• Propofol. A milky-colored liquid given by IV, propofol has a rapid onset with a rapid recovery. Administration and monitoring by an anesthesiologist (doctor who specializes in giving anesthetics) are required. Propofol, a general anesthetic, will cause your child to lose consciousness. At low doses, propofol prevents memory of the procedure, but may not relieve all pain, so it is often used with EMLA or lidocaine.
  

• Ketamine. Ketamine needs expert monitoring. It has a much longer recovery time than the drugs listed above, and upon awaking, up to 30 percent of children may become confused and/or hallucinate. For these reasons, ketamine is no longer in wide use for pediatric sedation procedures.

Discuss with your oncologist and anesthesiologist which method will work best for your child.

Since most children with leukemia are treated for years, many children build up a tolerance for sedatives and pain relievers. Often, over time, doses may need to be increased or drugs changed. If your child remembers the procedure, advocate for a change in drug and/or dosage. It is reasonable to request an anesthesiologist to be present to ensure adequate pain relief and to deal expertly with any complication that may arise.

E. Side Effects

E.1. Will my child lose her hair?

Hair loss is quite variable for children being treated for leukemia. Some only lose part of their hair, some have hair that thins out and looks wispy, others quickly lose every hair on their heads. Losing hair symbolizes cancer and announces to the world your child’s condition. It also dramatically changes children’s appearance and is sometimes hard for children and parents to accept. Some parent suggestions for coping with hair loss are:

• When hair is thin or breaking , use a brush with soft bristles.

• When hair is thin, use a mild shampoo specifically designed for over treated or damaged hair.

• A flannel pillowcase or receiving blanket placed on the pillow at night will help collect the hair that is falling out.

• Allow your child to choose a collection of hats, scarves, or cotton turbans to wear. These are tax-deductible medical expenses, and might be covered by insurance.

• Advocate that school-age children be permitted to wear hats or other head coverings to school, if that is their desire.

• Separate your feelings about the baldness from your child’s feelings. Let it be OK to be bald.

E.2. Are there ways to prevent nausea and vomiting?

There are some very effective medications available that prevent nausea and vomiting. Two of the most commonly used drugs for children are ondansetron (Zofran) and Kytril. Advocate for the appropriate use of these agents for your child.

The effects of anti-cancer drugs vary from person to person and dose to dose. A drug that makes one child violently ill often has no effect on other children. Some drugs produce no nausea until several doses have been given, while others cause vomiting after a single dose. Because the effects of chemotherapy are so wildly variable, each child’s treatment must be tailored to his individual needs. There is no relationship between the amount of nausea and the effectiveness of the medicine.

The following are suggestions for helping children cope with nausea and vomiting:

• Smells can trigger nausea. Try not to cook after your child has had chemotherapy. Always have your child stay in a well ventilated room, with the windows open if possible.

• If your child is nauseated by smells, use a covered cup with a straw for liquids and place a small fan on the table to blow the smells of the food away from your child.

• Serve dry foods such as toast, pretzels, or crackers whenever your child feels nauseated.

• Avoid giving sweet, fried, or very spicy food. Instead, serve bland foods such as potatoes, cottage cheese, soup, or toast.

• Have the child keep her head elevated after eating. Lying flat can induce nausea.

• Your child should wear loose clothing because it is both more comfortable and easier to remove if soiled.

• Use distractions such as TV, videos, music, games, or reading aloud to divert attentions from nausea.

E.3. Low blood counts: what is an ANC?

ANC stands for absolute neutrophil count. Neutrophils are a type of white cell that fights infection. Generally, an ANC over 1000 provides the child enough protective neutrophils to fight off exposure to infection due to bacteria and fungi. With an ANC this high, you can allow your child to attend all normal functions such as school, athletics, and parties. However, it is wise to keep close track of the pattern of the rise and fall of your child's ANC. If you know that the ANC is 1000, but is on the way down, it will affect your decision on what activities are appropriate (see question E.4. below for futher guidelines).

A detailed explanation of blood counts and what they mean–including how to calculate your child's ANC from her blood count lab report–is contained in Blood Counts Explained.

E.4. How can I protect my child from infections?

The following are general guidelines for children with low ANCs:

ANC 500-1000:

Keep your child away from large groups of people.

ANC 200-500:

Keep your child at home. Visitors should be healthy and should wash their hands.

ANC 0-200:

Keep your child at home. It is better to allow no visitors, as your child is very susceptible to infection.

Additional tips on infection prevention:

• Insist on frequent thorough hand washing for every member of the family. Use antibacterial soap and warm water, lather well, and rub all portions of the hands. Children and parents need to wash before preparing food, before eating, after playing outdoors, and after using the bathroom.

• Make sure that all medical personnel at the hospital or doctor's office wash their hands before touching your child.

• When your child's ANC is low, make arrangements with your pediatrician to use a back entrance to the office to avoid exposure to sick kids in the waiting room. It sometimes helps to make appointments for early morning so that your child can be seen in a room that hasn't had several sick kids in it.

• Do not use a humidifier as the stagnant water can become a reservoir for contamination.

• Apply a sunscreen whenever your child plays outdoors. Children taking methotrexate are sun sensitive, and a bad sunburn can easily become a site for infection.

• Siblings should not be vaccinated with the live polio virus (OPV). They should get the killed virus (IPV).

• Call the doctor if any of the following symptoms appear: fever above 101°F., chills, cough, shortness of breath, sore throat, severe diarrhea, bloody urine or stool, or pain and burning while urinating.

F. Sources of Support

F.1. Where can I get emotional support?

There are numerous ways to find emotional support to help the family weather the storms of cancer treatment. First check to see if your child's hospital has a clinical social worker or psychologist on staff to help families. Your hospital may also have a child life program that can immensely help both children and parents learn about, and prepare for difficult or painful procedures. In addition, many institutions have parent support groups in which parents can share practical information learned through personal experience, provide emotional support, give hope for the future, and truly listen. One mother described the ability of her group to "give voice to my feelings when I just don't have any words."

There are a number of organizations and groups that can help with emotional support, including:

Candlelighters Childhood Cancer Foundation
(800) 366-CCCF
Email: info@candlelighters.org

Candlelighters Childhood Cancer Foundation Canada
(800) 363-1062 (Canada only) or (416) 489-6440
Email: staff@candlelighters.ca

Ped-Onc Mailing List, an online support group for parents of children with cancer.
Email: listserv@medinfo.org

To subscribe, leave the subject line blank and in the body of the message type: subscribe PED-ONC [your] first name last name (if you have a signature, delete it).

Helpful Organizations and Groups lists additional resources for emotional support.

F.2. Where can I find financial help?

If you are having difficulty paying your hospital bills, call your social worker or billing liaison to set up an appointment to discuss the hospital's policy on financial assistance. Many hospitals write off some or all of the cost of care if the patient is uninsured or underinsured.

SSI (supplemental security income) is a program administered by Social Security. Recipients must be blind, ill, or disabled, with a low family income. Children with cancer qualify as disabled for this program. To find out if your child qualifies, look in the phone book under "U.S. Government" for the "Social Security Administration." Ask to speak to someone about eligibility for SSI. In cases of hardship, the caseworker will take your application over the phone and tell you if you qualify.

Medicaid is administered by state governments and rules on eligibility vary. Call your local or county social service department to obtain the number for the Medicaid office in your area. In addition to paying some or all medical bills, Medicaid sometimes also pays transportation and prescription costs. Ask for a detailed list of benefits available in your state.

There are numerous service organizations that help families in need. They provide all kinds of help: transportation, wigs, wheelchairs, and food. Some organizations that may exist in your community are: American Legion; Elks Club; fraternal organizations such as the Masons, Jaycees, Kiwanis club, Knights of Columbus, Lions, Rotary; United Way; Veterans of Foreign Wars; and churches of all denominations. In addition, local philanthropic organizations exist in many communities. To locate them, call your local Health Department, speak to the social worker, and ask for help.

Many drug companies have programs to provide free medicines (including chemotherapy) to needy patients. Eligibility requirements vary, but most are available to those not covered by public or private insurance programs. Ask your physician to request, on letterhead, a free copy of the Directory of Pharmaceutical Indigent Programs from:

Directory of Pharmaceutical Patient Assistance Programs.
Toll free hot line: (800) PMA-INFO

The Leukemia Society of America also has a financial aid program. (800) 955-4LSA