Supporting your children through your diagnosis and treatment

Keep routines as normal as possible, and limit the number of different caregivers spending time with the child. This will help the child feel confident that his or her needs are being met. Remember, young children often react to the changes around them, not the actual illness, because they don't understand the impact or meaning. Both younger and older children feel safer within their familiar routine.

Remember to use simple language, giving a little bit of information at a time, and use the same terms consistently when explaining what illness mommy has, what will be happening to mommy, and why mommy is in the hospital. If your family has a special word that they use for cancer, ensure that all caregivers are aware of it and use that specific word when talking to the child(ren) about what is happening. Children tend to cope best when they are well-informed and there are no surprises about what is happening. When children are told about the diagnosis and what to expect their anxiety levels are lower and family communication is improved. Keep the explanations simple and try to avoid over explaining. Giving information in small amounts over time will also allow children to process each bit, and helps them avoid feeling overwhelmed.

If mom or the family desires privacy about this diagnosis, it is appropriate to let children know that there are a number of special people they can talk to about this whenever they want, and list these people. Then you can explain that this is something you would like to keep private for now.

"Why did this happen?" is a common question children ask after being informed of mommy's diagnosis. Children's basic understanding about illness is that something causes an illness to happen, such as colds which are contagious and can be shared. A few things should be clarified from the beginning:

• "Nothing you said or did caused mommy to get sick." "Mommy is not sick because you did anything bad or wrong."
• "Cancer is not something that you can catch from mommy like a cold. Mommy cannot give this sickness to anyone."
• "We do not know why mommy got sick. Even the doctors may not be able to answer that question."

Young children often ask questions repeatedly, not to drive you crazy, but because they need to continually check in and clarify for themselves, what is happening and why. Stay consistent with your responses and answers using the familiar family terms.

It is important to regularly ask your child if they have any questions about what is happening, and remind them that if they hear different things about cancer from their friends or on TV that they should ask you about what they heard so you can clarify if it is correct or incorrect. Young children are often magical thinkers so clarification about cancer and cancer treatment needs to be an ongoing and continued routine. Children gather a great deal of misinformation from TV and from peers, so check in regularly to correct misunderstandings and misinformation.

Toys or stuffed animals can be identified as "mommy loves you" bears that are for hugging when you want a hug from mom but she is still in the hospital. Sometimes children may like to pick a special t-shirt from mom to snuggle or wear at bedtime while mom is in the hospital. Older children may prefer to pick out a photo of mom to place in their school bag or in their bedroom. All these items help a child cope and manage better through periods of separation.

Children want attention, whether it is negative or positive, from the adults around them. When family illness interrupts the normal focus on them and their needs, children may act out to ensure attention is given to them. If behaving badly is getting them attention, children will continue to behave badly because it is working for them. If parents are unable to create some daily one-on-one time with the child, have a family member or designated caregiver temporarily take over a one-on-one routine, such as bath time or story time to ensure some special attention is given to the child. Continue with normal family behaviour management strategies and rules. It is important that children are given consistent messages about acceptable and unacceptable behaviour.

If a child is able to visit mom in the hospital, it is important to explain that there may be special medicine in a bag/tube (called an I.V.) that is helping mommy feel better, or there might be special bandages/band aids where mommy has a "boo boo" or has recently had surgery. It is also a good idea to explain whether or not lying in bed for a snuggle with mommy is physically possible during the visit, which often depends on pain level and post-surgery or treatment areas that may still be healing.

Many young children are quite comfortable in the hospital and want to play with mom just like they do at home, while other children are fascinated with the actual hospital environment and equipment, and may not pay full attention to mom during the visit. This is normal, as children take in all the new and different materials, people and smells in the hospital. Older children are more aware of what takes place in a hospital and may have more questions or concerns for mom when visiting.

Some children regardless of preparation may not want to visit the hospital. Open communication and discussion is important at this time to determine if the child needs more information about what is happening, is just distracted or preoccupied with other activities, or if they need additional support and preparation from a professional child life specialist. Try not to force a child to go to the hospital when they express a desire not to go. Continue to provide information and invitations to visit, and encourage them to create art, poems or crafts for mom, and speak to her regularly over the phone.

If you are not comfortable having your child visit you in the hospital, have your partner or a family member suggest that they draw a picture for you, or go for a walk and pick a flower for you. If your children are older, encourage them to write a letter or poem.

These visits, although important, are much more relaxed and far less stressful than in-patient visits. Some appointments or visits may be long, so be sure to pack appropriate games, toys and materials for you and your children to play with while waiting. Small snacks and drinks might be needed to get though longer wait times so pack and plan accordingly. Having a fun picnic together in the waiting room or treatment room can be a positive hospital experience for everyone.

It is important to know that a parent's actions, reactions and responses to a cancer diagnosis and treatment will directly affect a child's actions, reaction and responses. A parent who is experiencing stress and anxiety about the diagnosis and treatment, or is having difficulty coping needs to take the necessary steps to ensure his or her own needs are met.

A child is constantly watching and taking their cues for how to respond to a situation, interaction or diagnosis directly from their parent's actions, interactions and responses. If a parent is demonstrating anxiety and upset, the child will often respond with anxiety and upset too. Please ensure that you seek out the support you need to assist you in reducing your own stress about yours/or your partner's cancer diagnosis and treatment, and take the necessary steps to ensure you find appropriate support for your coping and stress-reduction needs. Some helpful stress and anxiety reducing strategies are deep breathing, yoga, meditation, exercise, listening to music, participating in a favourite hobby or activity, talking to a counselor or therapist and in some cases medication may be necessary to assist you with stress and anxiety.

Be aware that phone conversations and any whispered discussions about you/or your partner's cancer diagnosis with family, friends or other adults are also being watched and/or listened to by your child.

Every parent and child is different, so naturally there are different reactions from both parents and children to hair loss and other changes in appearance due to cancer treatment.

Explaining possible changes in appearance before treatment starts allows children a chance to ask questions and process possible outcomes. Some simple explanations about hair loss are:

“The medicine mommy needs to take to help me get better is very strong. Mommy's hair may fall out but it will grow back after I finish treatment".

“I may look different on the outside now, but on the inside I am still the same mommy. I still love you just as much as I always have".

“My hair has fallen out because of the medicine I need to take. You might see mommy wearing different hats, scarves or special hair called a wig to cover my head while my hair is gone”

Children react in many different ways when hair loss occurs following chemotherapy. Some express feelings of worry, while others may be initially scared or embarrassed by the physical change. Still there are other children that find their mothers hair loss quite funny, and may joke about it. Some children report that they do not really care about the hair loss at all and are not worried about it, they just want their mom to get better. All these responses are normal.

Some children may express a desire that mom wear a wig or hat when they bring their friends over, or when their mom picks them up at school. Although mom may feel quite confident and positive about her hair loss, even choosing to shave her hair off before chemo begins, some children may want some time to adapt to the change in appearance before "going public" with mom's hair loss to their peers. Other moms may not want to see anyone when their hair falls out and would rather remain private during the chemotherapy stage. Talk to your child(ren) openly about how they feel and how mommy feels about hair loss, and discuss wigs, hats and scarves and public and private times.

Children need to be told that mom might not have as much energy, or be able to do all the usual things she does because the medicine and treatment can make her tired and/or cause her some pain or discomfort. Start by explaining that these are normal side effects and that mom won't always feel this way but that it will take some time for mom to feel better. Some helpful statements are:

"I would really like to do the things we usually do together, but right now I can't/don't have the energy to do so. Let's think of some activities we can do while you sit with me in bed!"

"The medicine mommy is taking is very strong. The medicine helps me get better, but while it does that it makes me feel tired/sore/sick".

From a very early age children may associate a cancer diagnosis with the threat of dying. Parents may underestimate their child's need for information and try to protect them by choosing to avoid discussing emotionally charged topics. Avoiding questions about death and not talking about this connection does not protect children from potential anxiety and fears. Talking about death may feel uncomfortable or strange, but is necessary to ensure your children understand what death is and how and if your illness will affect your life and theirs.

Faced with the news of mommy's cancer, many children will wonder "Will you die?" They may ask you immediately, or wait many months from the initial diagnosis before asking. The response and the information you give will be shaped both by your personal feelings and beliefs about death and dying, and your child's age or developmental level of understanding. You will need to be able to articulate your own beliefs about death, and your children will need the topic to be open for discussion so that they can ask questions freely without feeling embarrassed, guilty or fearful.

Some helpful responses to questions about death include:

• “Some people do die from having cancer, but a lot of people also get better and live to be old."
• “The doctors and nurses are doing everything that they can do to help mommy get better. The doctor thinks that mommy will be fine. Lots of people who get the cancer that mommy has, live for a long time. I will tell you if anything changes."
• "Right now the doctors say that mommy is doing fine, the medicine is working and making mommy better. If anything changes and the medicine stops working I will tell you."

Always use the word "die" and/or "death" when discussing and explaining death and dying to your children. Gentle substitute words, metaphors and phrases may seem nicer and easier to say but they can cause a great deal of confusion and upset. For example, death as a deep sleep can cause children to fear sleep, or be afraid mom has died when she is sleeping. Tell your child what you expect to happen in the next few weeks and/or months to ensure they do not think that death could happen at any moment. Let your child know that it is normal to cry, be grumpy, or fearful when people around them are sad and worried.

It is also important to remember that children may have a distorted sense of what "death" actually means, since many cartoons and movies include story lines where characters come back from death. News and television programs may also portray death as something violent. So ensure you talk about the differences between real death and TV/movie deaths.

Finding natural examples of death and the life cycle in nature can help children understand death as a natural part of the life cycle. Look outside or around your house for examples of death. This may include a dead flower, insect, bird or squirrel. Point it out and explain to your child that the flower/insect/bird/squirrel is dead, and that means they are no longer alive. They cannot move, eat, breath or grow anymore. They are dead.

Seek professional assistance if you feel you need support or assistance from a doctor or medical team member when speaking to your child about death.