Coping with a child’s blood cancer diagnosis

Get Coping with a Childhood Cancer Diagnosis, Chapter 3

This chapter is a segment from our Caring for Kids And Adolescents with Blood Cancer workbook, which provides information for caregivers of child and adolescent patients. Caregivers may order a copy of the full workbook by calling (800) 955-4572.

Download PDF Order a printed copy

When a child is diagnosed with blood cancer, everyone in the family is affected. This holds especially true when a child has blood cancer. Different families have different ways of coping, but there are some sound strategies that anyone can employ.

Coping tips for family and friends

Open each section below to learn more.

Throughout your child's illness, you'll be focused on comforting your child and helping them navigate their treatment. You may also need to explain what's happening to your other children, answer relatives' questions, and perhaps make alternate arrangements for work and childcare. All along the way, you'll be coming to terms with your own feelings and choices.

Managing emotions

You'll likely experience a wide range of emotions from the time your child is diagnosed with blood cancer, throughout treatment, and beyond. Here are some suggestions to help you deal with those feelings:

Shock and confusion: When a doctor tells you your child has blood cancer, it's natural to lose focus on what else the doctor is saying and block out other, often complicated, information about your child's illness. Healthcare professionals understand this reaction, so don't hesitate to ask them to repeat information. To ensure that you're able to keep track of everything, take notes or record your meetings. You might also find it helpful to keep a notebook with important information as well as the business cards of the healthcare professionals you're consulting with.

Denial: Most parents would like to believe that their child's blood cancer diagnosis is a mistake. For a short period, denial about the accuracy of the diagnosis may even help you adjust to the reality. But staying in denial for too long may delay the timely beginning of treatment and isolate your child and other family members when communication is important. Getting a second opinion or requesting additional information about a doctor or medical center's credentials can be helpful, but you must do this without delay. Healthcare professionals are generally willing to help arrange this.

Hope: Hope plays an important role in the ability to cope, particularly in trying times. Talk with other parents whose children have had a similar diagnosis or treatment and have recovered. The knowledge that other children have recovered can inspire hope in knowing that your child has a good chance for recovery, too.

Fear and anxiety: Some people find it helpful to talk about their fears and anxieties. Others prefer reading about the disease and its treatment. Your child's treatment team includes professionals trained to help you gather information about all aspects of your child's illness: physical, emotional, and financial. Enlist their support—they want to help you. Relatives and friends can often be a source of strength and understanding. However, some well-meaning loved ones may deny the illness, offer homemade remedies, or disapprove of your choices. Enlist the assistance of professionals to deal with friends or relatives who aren't supportive.

Anger: You will almost certainly feel angry at times. You might feel anger and frustration at your child's doctor or the entire medical profession for the difficult treatments, your health insurance company, or the healthcare system. Maybe you're angry that your innocent child has to suffer or that your faith or God didn't protect your child from the disease. You may have no direct outlet for these angry feelings and misdirect them toward family members, co-workers, or even strangers. Talking about anger with trusted friends, relatives, and professionals is one way you can learn to accept these feelings and take constructive action when possible. Try seeking support from other parents in similar situations. When issues spark your anger, try to work with your child's treatment team to change situations or resolve problems. Physical activity, journal writing, and finding private time and space to vent feelings are all good ways to cope and manage stress and anger.

Guilt and blame: You may react to the stress of the blood cancer diagnosis by looking for a cause or for someone or something to blame. Almost all parents experience guilt. Maybe you think you passed on bad genes or did something wrong that caused the cancer. Or you blame yourself for not paying more attention to your child's symptoms and seeking a medical evaluation sooner. As hard as it is to accept, you may never know what caused your child’s blood cancer. First, acknowledge your feelings of guilt. Then, get support from healthcare professionals to gain a better understanding of your child's illness. Psychologists, social workers, and spiritual advisors may also help you come to terms with your child's blood cancer diagnosis. If friends or family members blame a family member for the blood cancer diagnosis, remind yourself and your family that no one is to blame. It's important to remember that they're trying to make sense out of the situation too, however wrong or inappropriate their reasoning.

Sadness and loss: It's normal to feel a sense of loss. You may realize that life for your child and family will never be the same. Allow yourself to feel sad. Over time, you'll find ways to adapt and gradually develop a new sense of normalcy for you and your family. However, if you feel consumed by sadness or are unable to function, seek professional help. It's important to work through your feelings so you can help your child cope and you can continue to manage other aspects of family life and work.

Doubts about religious and spiritual beliefs: Your child's illness may seem unfair. The seeming injustice can lead you to question your views on the meaning, purpose, and value of life or your spiritual beliefs and relationship with God. You may feel empty, cynical, or discouraged. Explore these feelings with a counselor or a spiritual advisor.

Working with a co-parent or primary caregiver

If you share caretaking responsibilities with a co-parent or other caregiver, each may react in different ways after the initial diagnosis. Every person is an individual with their own way of expressing emotions. There is no right way to feel or react. Respect each other’s coping styles to avoid blame and criticism.

Both you and your co-parent can be involved in your child’s treatment. Discuss responsibilities and expectations early and discuss how your roles may change. Caring for a sick child is mentally and physically challenging and exhausting. By sharing responsibilities, you are allowing each other time to rest and recuperate. If only one parent takes on the bulk of the responsibilities related to the child’s care, that parent may start to feel resentment toward the co-parent or feel that there is a widening gap in their relationship.

You and your co-parent may disagree at times about how to approach your child’s treatment and care. Resolving these types of disagreements might be difficult, but it is important to do so in the interest of supporting your child. Resolving differences should not be thought of as a win-or-lose situation but as a collaborative means to provide the best care for your child. Do not discuss or argue about your child or issues related totheir illness in front of them. Try to present a united front.

As treatment progresses, check in with your co-parent and ask how they are feeling. Always keep the lines of communication open. If you find yourself struggling with your relationship, reach out to members of the healthcare team for a referral to a family therapist.

Separated or divorced parents or caregivers

Separation or divorce is often difficult for families. The blood cancer diagnosis may put added strain on already difficult relationships. Nonetheless, it is very important to focus on what is best for your child. Set aside personal issues and work together so that both of you are making sure that your child is getting the best possible care. Consider the following suggestions as they can be helpful:

Give the healthcare team a copy of any divorce decree, custody, or visitation rights to add to your child’s medical record.
When possible, meet together with members of the healthcare team so that you can both ask questions and avoid confusion about appointments or treatment plans. Ask for two copies of all materials so that you each have one. To care for your child, you both need to be well-informed on the diagnosis, treatment plan, and potential side effects.
Allow stepparents to be involved. If your child is spending time in both households, stepparents may be caring for your child too. They will need to be knowledgeable about important medical information, such as how to give medications and which signs and/or symptoms require a trip to the emergency room.
If your child spends time in two households, it may be helpful to keep a notebook that travels with your child from house to house. The notebook can contain notes about medication, side effects, or other important information for the adult who is caring for the child at any given time.
If the divorce or separation occurred recently, your children may need additional support to cope. Ask members of the healthcare team (for example, a social worker or child-life specialist) for guidance.

Regardless of age, children are usually aware when their health causes their parents concern. Your child may experience a variety of emotions, such as anger, guilt, fear, anxiety, and sadness, all in quick succession.

After a blood cancer diagnosis, your child will need to cope with many changes. Challenges include 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. 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. To help your child to adjust and to accept these changes, try to maintain a supportive, yet matter-of-fact attitude.

It will help your child to cope with their illness if you:

Provide structure. Children crave structure. It makes their environment feel more predictable and, thus, more secure. It can also increase the sense that their parents and people they trust are in control of the situation. Make their daily lives consistent whenever possible. For example, plan a regular routine that you will follow during your time together in the hospital or clinic.
Allow your child to make choices when possible (for example, let them choose which movie to watch, or what snack to eat). This can help your child with their feelings of loss of control.
Acknowledge and praise your child when they do difficult things. Praise is the best way to reinforce your child’s good behavior.
Use touch to provide comfort. Hold or rock your child. Even if your child does not understand your words, the sound and tone of your voice can still be comforting, too.
Use the same consequences for bad or inappropriate behavior as you did before your child was diagnosed with cancer. Consistency will maintain structure and normalcy.
Show that you respect your child’s feelings of anger, worry, sadness, or fear. Give your child appropriate outlets for expressing these feelings, such as drawing or keeping a journal.
Keep your child busy with activities during treatment to take their mind off difficult and unpleasant experiences
Help your child to stay connected with friends from home and school with phone calls, video chats, emails, texts, or visits, if possible
Look for support groups for children with cancer in your area or online. Talking to other children who are going through a similar experience can be very helpful for your child.
Ask for professional assistance from the healthcare team for your child if they are having an especially difficult time adjusting to the cancer diagnosis and its treatment

Teenaged cancer patients often face challenges specific to their age. Keep the following topics in mind to help your teenager cope:

Independence: A blood cancer diagnosis may feel like a setback in your teenager’s search for independence. Your teenager may need to rely on you more during treatment, which can lead to feelings of frustration. Respect your teenager’s privacy and allow them the opportunities to do things alone when it is safe and appropriate to do so.

Fertility: Some blood cancer treatments can affect fertility. Fertility preservation, such as egg or sperm banking, usually needs to be done before treatment begins. Ask members of the healthcare team to help with this sensitive discussion. Additionally, some blood cancer treatments can interrupt the menstrual cycle. If your child is going through puberty and has already started menstruation, ask members of the healthcare team how the menstrual cycle may be affected and what to expect. Explain possible changes to your child.

Peers: Teenagers often have active social lives. Not being able to participate in as many social activities as before their blood cancer diagnosis may be difficult for your teenager. Your teenager may also be very sensitive to changes in appearance, such as hair loss and weight changes. Encourage your teenager to stay in contact with friends as much as possible. Allow them to participate in activities that are medically safe.

Dating and sexuality: Your teenager’s social life may include dating. All teenagers need to know how to practice safe sex. Even if you think your teenager is not sexually active, make sure they understand the risks associated with having sex while receiving blood cancer treatment. Ask members of the healthcare team for help with this discussion. Teenagers may wish to talk to members of the healthcare team alone so that they feel comfortable sharing information and asking questions. They need to know that if they are sexually active, they must:

Use some form of birth control. Pregnancy during cancer treatment can be unsafe for both the pregnant person and the baby.
Use condoms, or another barrier method, to protect against sexually transmitted infections (STIs). Cancer treatment can compromise the immune system putting the person at higher risk for infection. Oral contraception, such as birth control pills, and implants, such as an intrauterine device (IUD), do not protect against STIs.
Ask the healthcare team if it is safe to have sex. There may be times that sex is unsafe for people undergoing cancer treatment. For example, if patients are at risk for bleeding issues due to a low platelet count, they may need to refrain from sex until platelet numbers improve.

Tobacco, drugs, and alcohol: Talk to your teenager about tobacco, drug, and alcohol use, even if you believe they do not use them. It may be dangerous to consume alcohol or do recreational drugs while taking certain medications or receiving certain blood cancer treatments. If your teenager uses any tobacco products, ask members of the healthcare team for smoking, “vaping,” and/or tobacco cessation resources. Encourage your teenager to be honest with the healthcare team about any drug or alcohol use. Your teenager may wish to talk to the healthcare team about these sensitive topics privately.

Future plans: Your teenager may have already been making plans for the future, such as applying for college, internships, or jobs. Blood cancer treatment may interrupt these plans. Talk to a social worker, child-life specialist, or guidance counselor to find ways for your teenager to continue working toward their goals, as treatment allows.

Helping siblings cope

When a child is diagnosed with blood cancer, everyone in the family is affected by the experience, including the child's siblings. They can feel angry, anxious, lonely, or sad. They may even feel guilty for being healthy or for resenting the attention their sibling is getting. You can help your children cope with a sibling’s diagnosis in some of the following ways:

Give them the chance to talk about how the experience is affecting them
Be open and willing to answer questions about their brother’s or sister’s cancer and treatment
Reassure younger siblings that they cannot “catch” cancer from their brother or sister
Explain that their brother or sister didn’t do anything that caused the cancer
Warn siblings that the diagnosed sibling may have less energy or lose their hair
Explain that other concerned family members and friends may ask them about their sibling’s diagnosis. Talk about appropriate responses.
Remember that siblings still have their own problems, unrelated to a cancer diagnosis. Their problems are real and require your attention.
Provide consistent, fair discipline to all your children, even though it may be more difficult right now
Allow older siblings to help with their younger sibling’s care in age-appropriate ways, such as reading a bedtime story
Let all your children know that you love them and are proud of them

Keep a routine and share Information

Siblings need to continue to go to school and participate in their usual activities as much as possible. However, disruptions to their routine are inevitable, and they may feel lost or overlooked. Here are some suggestions for keeping them from feeling overlooked or ignored:

Let siblings know when a hospitalization or long clinic day is anticipated
Let siblings know where they'll be staying (if not at home) and who will be staying with them. Explain any other arrangements that have been made to provide for their care if the family routine has changed.
When possible, let siblings have a say in where they would like to go after school and whom they'd like to care for them when you're not available
Arrange for siblings to visit the hospital when possible and spend time with their diagnosed sibling playing board games or watching TV together
If you can, introduce siblings to the treatment team, who can help give medical information and reinforce that the siblings are special too
Arrange for special "alone time" with each sibling

Give them the chance to talk about how the experience is affecting them
Be open and willing to answer questions about their brother’s or sister’s cancer and treatment
Reassure younger siblings that they cannot “catch” cancer from their brother or sister
Explain that their brother or sister didn’t do anything that caused the cancer
Warn siblings that the diagnosed sibling may have less energy or lose their hair
Explain that other concerned family members and friends may ask them about their sibling’s diagnosis. Talk about appropriate responses.
Remember that siblings still have their own problems, unrelated to a cancer diagnosis. Their problems are real and require your attention.
Provide consistent, fair discipline to all your children, even though it may be more difficult right now
Allow older siblings to help with their younger sibling’s care in age-appropriate ways, such as reading a bedtime story
Let all your children know that you love them and are proud of them

Keep a routine and share Information

Let siblings know when a hospitalization or long clinic day is anticipated
Let siblings know where they'll be staying (if not at home) and who will be staying with them. Explain any other arrangements that have been made to provide for their care if the family routine has changed.
When possible, let siblings have a say in where they would like to go after school and whom they'd like to care for them when you're not available
Arrange for siblings to visit the hospital when possible and spend time with their diagnosed sibling playing board games or watching TV together
If you can, introduce siblings to the treatment team, who can help give medical information and reinforce that the siblings are special too
Arrange for special "alone time" with each sibling

Cancer and cancer treatment can isolate a child. Your child may not be able to attend school, participate in recreational activities, or see friends regularly during treatment. Finding ways for your child to stay in touch with friends of their own age is very important. Staying in touch with their friends provides a sense of normalcy for your child so that they can still have fun and feel connected.

Depending on the age of your child and your child’s friends, you may need to work with the friends’ parents to clear up any misunderstandings their children have about your child’s blood cancer diagnosis. (For example, you cannot “catch” cancer, and no one did anything wrong to cause the cancer.) It may also be good to let friends know that your child may have less energy or may look different (for example, hair loss from chemotherapy). You will want to stress that, despite these changes, your child is still the same person.

The following suggestions can help you to keep your child connected to their friends:

Encourage your child to call, video chat, text, or email friends. Your child can also write letters or draw pictures. If your child is a teenager, allow them to talk to friends privately.
When your child is feeling up to seeing friends, arrange time to play and plan safe activities for your child and their friends. Keep in mind that the friends’ parents may not realize the precautions you need to take for your child’s well-being. Ask the visiting friend’s parent if their child is sick or has been sick recently before you set up a time to play.
If your child’s friend is sick, wait until the friend is feeling better before arranging a time to play. Your child’s immune system may be compromised from treatment, and they should not be exposed to illness.
Ask members of the healthcare team for further guidance on precautions you should take around your child or when spending time with other children
If your child needs to stay in the hospital for treatment, friends may be able to visit your child in the hospital, if approved by the treatment team. Plan these visits in advance so they do not interfere with treatment, procedures, or nap times.
If your child is staying in the hospital for treatment, ask if the hospital has a playroom. Your child can meet and play with other children who are also going through treatment.

Ask others for help

Consider asking others in your family or community to help:

Ask family, friends, or neighbors to help get children to their usual activities
Let each of your children's teachers, nurses, and guidance counselors know what's happening. (Don't assume they communicate with each other.)
Identify, with your child’s help, a "safe" person at school to talk with when they're feeling scared or sad. Request a hall pass so they can leave class to talk with that person when they need to.
Ask your hospital's social worker or psychologist or your school psychologist whether your community offers programs for siblings of children with cancer

Download our Caring for Kids and Adolescents with Blood Cancer, a free workbook written for the caregiver of a minor child (up to age 18) that includes information about caring for your child, treatment options, school, nutrition, financial, and legal issues, and more. This workbook also includes a set of worksheets and activities and includes a tote, journal, pen, and pill organizer. Caregivers may order a copy of the full workbook by calling (800) 955-4572.

Henry blood cancer survivor

It’s Childhood Cancer Awareness Month.

And kids deserve better. Help us transform treatment and care for kids with blood cancer.

Learn more

Get free, one-on-one support

Call, email, or chat with a member of our highly trained support team.

Blood Cancer United resources

Find free, specialized guidance and information for every type of blood cancer, request financial support, find emotional support, and connect with other members of the blood cancer community.