Caring for Yourself

As you may have already experienced, when your child has leukemia, providing physical and emotional care may be your first priority. But finding time for yourself, even for only a few hours a week, can help you feel less overwhelmed and better able to provide the support your child and other family members need. Caring for yourself is a crucial part of caring for your family.

Replenish Your Energy

Try to make time in your life for some of the things you used to like doing before your child got sick. Exercising, enjoying a hobby, taking a walk, or spending time with your partner can help you replenish your emotional and physical energy. Don’t feel guilty about making time for yourself -- it is truly one of the most important things you can do for your family’s emotional health.

Turn to Friends and Family

Spouses, other family members, and friends can provide support both by staying with your child occasionally and by taking care of day-to-day responsibilities. Don’t be afraid to ask for help with shopping, cooking, running errands, laundry, yard work, and countless other chores that pile up when you are caring for your child. You may want to make a list of things that need to be done, or ask a close friend or family member to be the contact person that coordinates assigning tasks to others who offer to help.

Also turn to friends and family for emotional support. Sharing your feelings with a good listener -- whether it’s a family member, close friend, professional counselor, or clergy member -- is an important part of healthy coping.

Find a Support Group

Support groups for parents of children with cancer can be a valuable source of emotional support as well as practical information. Many people find that simply talking to people who have had similar experiences can reduce the isolation they feel in dealing with a situation that few parents can really understand.

Support groups may be available at your child’s medical center, or the treatment team may be able to recommend one. If you live in a less populated area, there are many online discussion groups that connect families dealing with childhood cancer. Please visit the Resources section of this site for a listing of sources of support.

Create a Network

Home healthcare agencies, respite programs, social workers, and professional counselors can provide practical support and help you work through emotional issues. Talk to your child’s treatment team about finding support in your community.

If finances and questions about health insurance coverage for treatment are a concern, the Clolar Direct Response Program may be able to help. Learn more about this program.

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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.