Caring for Your Family

Having a sibling with leukemia can take an enormous toll on children, as you may already know. Brothers and sisters may feel conflicting emotions of sadness and fear for their sibling, mixed with jealousy, resentment, and anger if they think their own needs are being ignored. Helping them understand the situation and talk about their feelings may reduce their anxiety and help them cope with their very powerful emotions.

Talk About Leukemia

Explain leukemia and its treatment honestly, in words your children or teens can understand. Make sure siblings understand that leukemia is not contagious, and that nothing they -- or anyone else -- did could have caused or prevented it. Also be sure they realize that leukemia and its treatment are not punishments. School-aged children may want help in figuring out how to answer questions their classmates ask them, or how to respond to unkind comments others may make.

Do your best not to get upset when your children or teens ask questions or talk about their feelings. If they feel they can’t discuss the leukemia without upsetting you, they may keep their concerns to themselves, which may increase their anxiety. Talking about your own feelings can be a good way to encourage them to do the same. Reassure them that it is normal to feel some anger and resentment, and that it is important for them to let you know when something upsets them.

Spend Time with Siblings

Although you need to spend extra time with your sick child during treatment, try to set aside some time every week to do something with each of your other children. Make sure they know that they are cherished members of the family, and that you miss them when you are unable to spend time with them. Encourage them to take part in outside activities, and make time to notice and praise what they’re doing.

Involving siblings in their brother or sister’s care can also be beneficial. Bringing older siblings along to the clinic or hospital gives them a chance to see for themselves what treatment is like; the reality may not be as bad as they imagined. The sick child may be very comforted by the presence of a sibling, which in turn allows the sibling to know that he or she is helping.

Ask Family and Friends for Support

Having a close relationship with an adult other than a parent can help siblings of sick children feel special and cared for. When you can’t spend time with your other children, ask an aunt, uncle, or family friend to invite them for dinner, take them to movies, or just provide companionship. Of course, family and friends can also help with everyday responsibilities like driving siblings to and from after school activities or helping with homework.

Talk to Teachers or Clergy

Make sure your children’s teachers know what is going on at home. Teachers or clergy can be alert to any behavior changes that might indicate that a child or teen needs more help coping with the stress of having a sibling with leukemia. These adults may also be a source of support for your other children.

Read Books That May Offer Emotional Support

A number of books are available that address the challenges faced by families living with cancer. The listing below is just a sample:

• Childhood Leukemia: A Guide for Families, Friends and Caregivers (3rd Edition); by Nancy Keene
• Walking with a Shadow: Surviving Childhood Leukemia; by Nanci A. Sullivan
• The Cure of Childhood Leukemia: Into the Age of Miracles; by John, M.D. Laszlo
• Emotional aspects of childhood leukemia: A handbook for parents; by Patricia Deasy-Spinetta
• Christopher's Journey: One Family's Struggle with Childhood Cancer; by Maribeth R. Ditmars
• Living With Childhood Cancer: A Practical Guide to Help Families Cope; by Leigh A. Woznick, Carol D. Goodheart
• Fighting Chance: Journeys Through Childhood Cancer; by Harry Connolly, et al
• Childhood Leukemia: A Guide for Families, Friends and Caregivers (3rd Edition); by Nancy Keene
• Living With Childhood Cancer: A Practical Guide to Help Families Cope; by Leigh A. Woznick
• You and Leukemia: A Day at a Time; by Lynn S. Baker, Charles G. Roland, Gerald S. Gilchrist
• Kathy's Hats: A Story of Hope; by Trudy B. Krisher, Nadine Bernard Westcott (Illustrator)
• What About Me?: When Brothers and Sisters Get Sick; by Allan Peterkin
• Why, Charlie Brown, Why?: A Story About What Happens When a Friend Is Very Ill; by Charles M. Schulz

Find Support Groups for Siblings

Many of the organizations that run support groups for parents also offer similar groups for siblings of different ages. These groups can be very valuable in helping children and teens realize that they are not alone, and that others in their situation experience the same difficult emotions. Many siblings say that support groups are one of the few places where they feel safe to talk about all of their feelings.

If there are no support groups in your area, online support groups for children and teens are also available which parents might consider or monitor. Please visit the Resources section of this site for more information.

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How Clolar is Used

Clolar is a type of medication to treat children, ages 1 to 21 with a type of leukemia called relapsed or refractory acute lymphoblastic leukemia (ALL), after at least 2 other treatment attempts have failed. Clolar can reduce the number of leukemia cells in the blood. At this time we do not know if Clolar will help a child with ALL live longer or cure him or her of the cancer.

Important Safety Information for Patients

Serious side effects

Clolar can cause serious side effects that include:

• Systemic inflammatory response syndrome (SIRS)/capillary leak syndrome (CLS). Signs include fast breathing, fast heartbeat, low blood pressure, and difficulty breathing. These signs should be reported to the physician right away, as SIRS and CLS can be life-threatening if not treated right way. If your child experiences clinically significant signs of SIRS or CLS, your physician should stop Clolar immediately and consider giving your child steroids, diuretics, and albumin. When your child has stabilized, Clolar can be continued, usually at a lower dose.
• Bone marrow suppression and infection. Clolar can stop your child’s bone marrow from making enough red blood cells, white blood cells, and platelets. Serious side effects can result from this, and include severe infection (sepsis), bleeding, and anemia.
• Effects on pregnancy and breastfeeding. Females should not become pregnant or breastfeed during treatment with Clolar because Clolar may harm the baby.

Other side effects

The most common side effects with Clolar are stomach problems (including vomiting, diarrhea, and nausea), and effects on blood cells (including low red and white blood cells count, low platelet count, fever, and infection). A fast heartbeat has been noted in some patients taking Clolar. Clolar can also affect the liver and kidneys. For these reasons, your child’s healthcare professional will do blood tests to monitor his or her blood cells, kidney function, and liver function.

Treatment with Clolar quickly reduces the number of leukemia cells in your child’s blood. For this reason, your doctor should monitor your child for signs and symptoms of tumor lysis syndrome (TLS), as well as signs and symptoms of cytokine release, which can develop into SIRS, CLS, and organ problems. Your doctor is encouraged to give continuous IV fluids throughout the five days of Clolar treatment to reduce certain side effects. Your doctor may also prescribe allopurinol to reduce the build-up of uric acid that occurs with TLS. Your doctor should stop the Clolar treatment if your child develops low blood pressure for any reason during the five days of treatment.

Please speak with your healthcare professional if you have questions about Clolar. Also, please see full prescribing information.