Caring for a child newly diagnosed with blood cancer

Being told by a doctor that your child has cancer is devastating. Today, however, most childhood blood cancer patients can expect to have full and productive lives. Thanks to new and improved therapies, survival rates for childhood blood cancer have improved significantly over the past several decades. 

Doctors, nurses, and researchers continue to search for the causes of childhood blood cancers to develop even better treatments and tailor therapies to decrease toxic side effects. 

Social workers, psychologists, psychiatrists, and other health professionals are also working to understand how to help children and families manage cancer and its treatment while maintaining a good quality of life.

What does caring for a child with blood cancer look like? 

As a parent or caregiver, you already provide for your child in many ways, but caring for a child with cancer brings new challenges. You will be spending a lot of time with your child at medical appointments and working closely with the members of your child’s healthcare team to ensure your child is getting the best possible care. 

Depending on the treatment plan, your child may need to stay at the hospital overnight (or even for weeks) to receive treatment. You may have to deal with an emergency situation, such as a medical crisis requiring a trip to the emergency room. After your child’s cancer treatment is completed, you will need to be vigilant about follow-up care and watch for long-term and late effects of treatment. You will also have to help your child when they return to school. 

In addition to caring for a child who has cancer, you may have other children, as well as other family members, who also need your time and support. 

Equally importantly, you need to look after yourself during this difficult time.

Caregiving strategies 

Sometimes you may feel overwhelmed, but the following suggestions can help you to be at your best to help your child: 

• Ask for help and accept help from your co-parent, friends, and family. Talk to members of your child’s healthcare team about difficulties you encounter—there may be resources available to help you. Remember, you are not alone.
• Take care of yourself. You can better care for your child if you are healthy and well.
• Learn as much as you can about caring for a child with cancer. Ask the healthcare team where you can find trusted information. You can also contact an Blood Cancer United Information Specialist who can provide you with the latest, most accurate disease-related information. 

Your child’s experience  

After a cancer diagnosis, your child will need to cope with many changes, including being in an unfamiliar environment, meeting and trusting healthcare professionals, and undergoing procedures that may be uncomfortable.  

Your child may feel a loss of control over their world. The extent of your child’s distress depends on your child’s age and personality. To help your child to adjust and to accept these changes, try to maintain a supportive, yet matter-of-fact attitude. 

Learn more about talking to a child about a blood cancer diagnosis.

Possible behavioral changes 

Children who have serious illnesses are likely to show changes in behavior. Recognize that your child will continue to grow and develop throughout the course of cancer treatment. When your child is coping with the cancer diagnosis, the illness, and its treatment, you may notice some of the following behaviors:  

• Children who tended to be moody and have tantrums prior to their illness may become moodier and/or throw more tantrums
• Children who are particularly prone to worrying may need extra reassurance
• Children who tended to be withdrawn prior to their illness may become more withdrawn
• Some children may regress to an earlier stage of development. For example, your child may want to sleep with a stuffed animal that they have not paid attention to for some time.
• Children may have difficulty sleeping as a result of anxiety and fear around medical procedures or their illness
• Some children may want to have closer contact with a parent than they have had in some time
• Some older children may seek privacy and have difficulty dealing with parental concerns and monitoring related to their illness
• Some children may seem to mature emotionally and/or intellectually sooner than their peers. They may ask a lot of questions and want to be very involved with their own care and medical decisions.