What is grieving and how does it relate to my child's diagnosis?

Grieving is a normal response to a loss. The loss can include the loss of your previously healthy child, the loss of your normal daily routine, the impact of the diagnosis on other family members, and the financial impact of the diagnosis. The grieving process varies from person to person. The child with cancer, the parents, siblings, and other family members will all experience grief.

Coping with the diagnosis

Here are some practical things that you can do to help during this time:

Learn as much as possible about your child's disease

At times, ignorance or a lack of understanding is your worst enemy. Arm yourself with information to lessen frustration. Do not hesitate to ask questions about your child's disease. You may wish to keep a notebook with all the medical records and information about your child's diagnosis. Sometimes, parents can be too numb or too upset while at the hospital or healthcare provider's office with their child to remember everything the healthcare provider said. Write things down. Consider bringing another family member or close friend to the appointments. They can provide support, ask clarifying questions, and help you review everything afterward. Or talk with the healthcare provider about recording your conversations so you can review them later. 

Keep a journal of your feelings about your child's disease and its effect on your life

As time goes on, you will be able to look back and see that you are moving forward, even though at times it may not seem so. A private journal lets you express emotions that you may not want to share but are important to acknowledge.

Learn about your health insurance benefits

This way you will understand what expenses will be covered and what you may have to pay. Try to build a relationship with a specific person in your insurance company. This can be a customer support person or a benefits person. They can help you with your insurance plan. For example, they can help when you have questions about medical bills or if you need preauthorization for special procedures.

Continue doing some of your daily activities or ask for help

You will still have grocery shopping, laundry, and going through the mail to do on a daily or weekly basis. Having some of these "regular" activities will help you cope and feel more in control. But if the thought of managing day-to-day activities causes overwhelming anxiety, don't force yourself to do "normal" tasks. There is nothing normal about your current situation. Don't hesitate to change your responsibilities and ask for help. Friends and family members will often ask "Is there anything I can do to help?" Consider saying "yes" to this question. Ask them to pick up your groceries, help with the laundry or housecleaning, pick up your other children from their activities, or make dinner. "Assigning" a friend or family member something to do to help you will also help them feel like they are contributing.

Take care of your relationships

Although your main focus is on your child with cancer, try to spend time as you normally would with your other loved ones. It is healthy to have fun together, even when a child in the family has cancer. Easing stress and strengthening relationships will help all of you cope better with your child's disease.

Use support groups and other resources

Find out about supportive services available at the hospital to help you cope. These could be a social worker, case manager, financial advocate, counselor, or meetings with other families. Do not be afraid to ask for help. Each family's need for support is unique. Consider finding a support group in your local area or online. These groups allow you or your child to talk with other people going through a similar situation. Your child's healthcare team may be able to suggest a specific support group. Also ask your child's healthcare team about local resources that can help you with things like transportation or financial concerns, if needed.

Pass up emotionally draining situations

Sometimes, well-meaning friends and family members will say the worst possible thing at the time of a cancer diagnosis. They truly want to help or be supportive. But sometimes they do not know how to respond. Their words may hurt you or disappoint you, even though that was not their intention. You must realize that people will not know what your needs are unless you tell them. Sometimes, it is simply easier to be forthright and tell someone "I would just like you to sit quietly with me and keep me company" or "I need to spend some time alone right now." Do not be afraid to express your needs during this time.

Other parents or acquaintances may want to talk to you about their experiences with cancer. They may believe that they are being helpful to you, but instead may be making your situation feel even more overwhelming. It is important for you to stay away from these discussions if they are not helping you. And if you can't do so, try to politely tell the person their comments are distressing, rather than helpful. It is healthy to ask for what you need during this time.

Share what you have learned

You will have important knowledge and skills that you learn as you experience your child's illness. You could help other parents and their families by sharing your experiences in a support group or other setting.

Below is a list of tips for patients, parents, and siblings that may help each person cope with their emotions, depending on the age of the child with cancer and the age of the siblings:

Babies and very young children (birth to 3 years of age)

For patients:

• Holding

• Touching

• Rocking

• Playing soft music

• Hugging

• Cuddling

• Distracting with toys or colorful objects

• Creating a cheerful hospital room

• Having siblings visit

• Keeping their regular schedule for sleeping and feeding

For siblings:

• Providing cuddling

• Hugging frequently

• Arranging visits to ill brother or sister

• Keeping them near parents, if possible

• Using relatives, friends, or a daycare center to maintain their usual daily routine

• Having one parent spend time with them daily

• Recording lullabies, stories, messages when parent cannot be at home

• Offering reassurance often to toddlers that mommy or daddy will soon be back

Toddlers, preschool (3 to 5 years of age)

For patients:

• Giving very simple and repeated explanations for what is happening

• Providing comfort when child is upset or fearful

• Checking on child's understanding of what is happening

• Offering choices when possible

• Teaching acceptable expression of angry feelings

• Maintaining a normal daily schedule for feeding and sleeping

• Giving simple explanation for parent's distress, sadness, or crying

For siblings:

• Giving a simple explanation that brother or sister is sick, and that people are helping

• Offering comfort and reassurance about parent's absence

• Arranging for reliable daily care and maintaining usual routines

• Having one parent see child daily, if possible

• Remaining alert to changes in behavior

• Reassuring child about parent's distress or sadness

School-aged children (6 to 12 years of age)

For patients:

• Offering repeated reassurance that your child is not responsible for the cancer

• Teaching that sadness, anger, and guilt are normal feelings

• Letting your child keep feelings private, if that is preferred

• Suggesting personal recording of thoughts and feelings through writing or drawing

• Arranging for physical activity, when possible

• Providing explanations your child can understand about diagnosis and treatment, and including your child, when appropriate, in discussions about diagnosis and treatment

• Answering all questions honestly and in understandable language, including, "Am I going to die?" (talk with cancer care team about how to answer)

• Listening for unasked questions

• Facilitating communication with siblings, friends, and classmates, if desired

• Arranging contact with other patients to see how they have dealt with diagnosis

For siblings:

• Teaching about normal feelings of fear, anxiety, sadness, or anger

• Encouraging sibling to communicate feelings; suggesting sibling write, telephone, or send drawings or recorded messages to patient

• Providing understandable information about diagnosis and treatment

• Answering all questions honestly, including, "Will they die?"

• Listening for unasked questions, especially about personal health

• Offering repeated reassurance that sibling is not responsible for causing the cancer

• Informing teachers and coaches of family situation

• Arranging for school and other activities to continue on schedule

• Supporting siblings having fun, despite brother's or sister's illness

• Planning for daily availability of a parent

• Explaining that parents' distress, sadness, or crying is okay

Teens (13 to 18 years of age and older)

For patients:

• Giving information on normal emotional reactions to a cancer diagnosis

• Encouraging expression of feelings to someone: parents, family, or staff

• Tolerating any reluctance to communicate thoughts and feelings

• Encouraging journaling

• Providing repeated reassurance that they are not responsible for causing the cancer

• Being included in all discussions with parents about diagnosis and treatment planning

• Being encouraged to ask questions (parents should listen for unasked questions)

• Addressing spiritual concerns about "Why me?"

• Permitting private time for interaction with team professionals

• Offering assurance that parents and family members will be able to manage crisis

• Encouraging sharing news of diagnosis with peers and classmates

• Arranging for visits of siblings and friends

• Facilitating contact with other adolescent patients, if desired

For siblings:

• Involving adolescent in events around diagnosis

• Reassuring that cancer is not contagious

• Offering assurance that nothing they did or said caused the cancer

• Providing detailed information on diagnosis and treatment plan

• Answering all questions honestly

• Arranging access to treatment team, if desired

• Discussing spiritual issues related to diagnosis

• Encouraging expression of feelings

• Arranging for management of daily life at home

• Providing assurance that family will be able to handle crisis

• Informing teachers and coaches of family situation

• Encouraging usual involvement in school and other activities

• Asking relative or friend to take a special interest in each adolescent sibling

The various members of the cancer team can assist your family, as needed. The seriousness of a cancer diagnosis and the difficulties of treatment cannot be ignored.