The approaching death of a child is likely to be the most difficult time in any parent’s life. Children are supposed to outlive their parents, not the other way around…

Dealing with your child’s cancer is all-consuming; it drains you and the rest of your family – of strength, of vitality, of joy, of finances, and leaves one feeling helpless and hopeless much of the time.

Many parents feel that, even though they have already been given the prognosis and know that their child is dying, to acknowledge it means that they are giving up… Other families feel that they need to get their affairs in order…

Everyone is different and copes in their own way – there is really no right or wrong way to cope with the impending death of a child – you just need to cope in whichever way feels right for you and your family, no matter what anyone else may think or say.

It is often believed that difficult times can bring a family together and make the family unit stronger, but hardships can also create divisions. This sometimes happens if one parent has been more involved in their child’s care, which could mean that they are further along with the various stages of understanding and preparation than the other parent.

Dealing with the trauma of a child with an incurable disease is difficult, and individuals can go through various stages of disbelief, anger, understanding, acceptance and preparation. It is individual though, and does not always occur in the manner that we would expect.

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How Can I Prepare Myself?

Previous personal experiences of death may have been very different from the enormity of losing a child, but they could also help you to recognise ways you coped before that may help you now.

It is important that you try to see things not only from your point of view, but also from the perspective of your child, their siblings, and your spouse. There may come a time when you will be left alone with your thoughts, and many parents in this position have found it helpful to talk or write about their feelings, and have said that planning what to do and say gave them some purpose and direction.

While your child is still undergoing treatment, a day-to-day existence is all that many parents can cope with,but this can change as circumstances change. When the time comes that treatment is stopped and the doctors inform you that there is nothing more that they can do, it can become a momentous struggle to just get through each hour.

Some parents find that suddenly everything is very different and their values change; all that is important is that they are able to give their dying child love and comfort.  Other parents experience nightmares and dreams about their child’s death; whether they are strong enough, and whether they will manage to cope- these feelings could be your subconscious, rehearsing and preparing you for what lies ahead.

Even though doctors may have told you that it is near the end, it is extremely difficult for them to predict exactly how much time your child has left on this mortal plane, and for many it seems as though there is not enough time to say all that needs to be said. It is only when a child is within days or hours of death that the amount of time left becomes clearer and can be predicted more precisely; it is often difficult for many parents to believe their child is really going to die up until this point.

At this stage, parents are in an impossible position; the desire to make everything perfect is so strong that this in itself can cause worries and extra pressure for the family. Added to this, the desire of the parent(s) to make everything perfect for their Little Fighter can leave them feeling guilty and torn in many directions about not being able to meet everybody’s needs.

This can also place extreme pressure on relationships; some parents find it useful to seek professional help at this stage; others find it difficult to ask for help. Outsiders cannot always know when is the right time to offer help, so if you feel as if you are drowning, do ask for whatever help you think you may benefit from. Conversely, if you are offered help and feel that it is not the right time, it’s OK to say no – saying no now does not mean that you will never need help, so you can always ask later when you do need it.

When a child dies, it simply does not make any logical sense. We do not expect to outlive our children. It is not the normal way of things. Suddenly, all the promise of that young life has gone. The sadness and grief can be overwhelming and it can feel as if nobody understands your pain and you are isolated in your own private world of agony.

It is not natural for parents to outlive their children. Nothing can erase the anguish and distress that parents experience caring for a child with advanced cancer.

The following suggestions may help you cope:

  • Talk with your spouse, family members, or friends about your feelings and fears. It is normal to experience emotions such as anger, guilt, and frustration.
  • Seek support from a professional grief counselor, or attend a support group with other parents of children with advanced cancer.
  • Take advantage of offers of help from family and friends to ease your physical and emotional exhaustion.
  • Ask the medical staff to explain symptoms that occur close to death, such as skin and breathing changes. Knowing what to expect will help you feel more prepared.
  • Consider making funeral arrangements and any other plans in advance. By planning ahead, you can spend more relaxed time with your child at the end of life and avoid making decisions in a crisis.
  • Spend time with your child, and tell him or her how much you love them. Some parents, children, and other family members find it helpful to look through photo albums and share stories and memories of times spent together.
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How to Meet Your Child’s Needs

Many parents often feel powerless caring for a child with advanced cancer, but there are various steps that you can take to help meet your child’s psychosocial and physical needs. As your child’s cancer progresses, these needs will change.

Here are some tips to help your child experience the fullness of childhood for as long as possible:

  • Give your child time to play and engage in other age-appropriate activities, such as watching television, reading, doing arts & crafts, or exploring the outdoors (when possible)
  • Encourage your child to continue attending school for as long as possible, even if he or she cannot attend full time. If it is not possible for them to attend school for a long time, ask their teacher to allow classmates to write letters, draw pictures, or make videos.
  • Encourage your child to maintain friendships and other meaningful relationships.
  • Help your child to continue setting goals. Short-term goals such as learning to read or taking a special trip can help children gain a sense of achievement and give meaning to their lives.
  • Continue setting limits on your child’s behaviour and practice normal parenting as far as possible; without limits, your child can feel overwhelmed and out of control.
  • Advocate for your Little Fighter to ensure that pain and other symptoms are quickly treated.

As your child’s cancer progresses and death approaches, he or she will have additional needs.

Consider taking these steps during that time:

  • Give your child as much privacy and independence as possible.
  • Encourage your child’s end-of-life wishes. These may include giving away special belongings, writing letters to friends, or going on a special adventure. There are various organisations that help children fulfill their wishes before the end of life.
  • A nice project to undertake with your child at this time is the creation of a Life Box or Memory Box. You can take any kind of box or small suitcase and decorate it with your child and encourage them to put their favourite memories in it such as photos, favourite small toys, old cards, letters, artwork etc.
  • Give your child time to say good-bye to family, friends, teachers, and other special people. This can be done in person, with letters, or through a parent.
  • Make caregivers and medical staff aware of your child’s ongoing physical needs, especially the need for pain management.
  • Talk to your child about the physical symptoms and changes he or she can expect as his or her cancer progresses, but avoid scaring them. Remind your child that the doctors and nurses will help make the symptoms better. That way, he or she can feel as good as possible. Knowing what to expect will ease anxiety and fear.
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Preparing Your Other Children

Trying to imagine what the whole experience has been like for your other children can be painful. The siblings of a child who has been ill for an extended period of time can feel very left out. Allowing them to explore their feelings, and providing them an opportunity to talk with someone about their feelings can be of enormous help.

If a great deal of your time is spent with your ill child, make sure there is someone around for your other child or children, who they trust and can talk to. This will help them to still feel important and part of what is going on. Even if most of your time is spent with your ill child, any time that you can spend with your other children will be very precious to them and will also help them to feel valued and loved.

One 14-year-old girl said “I was glad that mum talked to me, I felt I was going crazy, didn’t know if I was right, what I was thinking”. She sat down with her mother and they talked through what had happened to her sister. After their conversation, the girl felt all the family were able to talk more freely.

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How Can I Help My Other Children To Talk?

If your Little Fighter’s sibling does not want to talk to you, remember that it might just be because it is not the right time, the right place or the right person. Not wanting to talk about difficult issues at any one time should not stop you from talking about the subject altogether. They may want to talk about it later.

You can try to get the conversation going by asking them how much they understand about what is happening to their sibling, what they think is going to happen, and what they fear. Taking these questions one step at a time can gradually bring about a necessary conversation. Always be prepared to go at their pace and stop when you or they have had enough. You can always say, “We can talk about this later if you like.”

Memory Boxes or Life Boxes can be a good way of opening up conversations, as can doing activity workbooks such as “When someone has a very serious illness” or “Muddles, Puddles and Sunshine.” Making scrapbooks can also help to open up conversations in a non-threatening way.

“I made my own box about my brother. He knew I was doing it, and we’d laugh, ‘cos he made one up about me as well, so we were both doing it. We talked about what things we enjoyed, what made us laugh and why things were special to us. After he died, it took me ages before I could look in my box. I saw that he had put in a tiny model of a rocket. That was special as he told me he’d go off on a rocket. That’s how I’d know he was gone.”

12-year-old brother of a 10-year-old boy

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How Will My Other Children React if Told Their Sibling is Going to Die?

Children are all different and will therefore react differently to this type of news. Some children may act as if they heard nothing at all, which may seem unfeeling, but it is a natural reaction to shock. One mother reported that her son said and did nothing – he just turned around, went outside and continued kicking his soccer ball as if nothing was wrong; this upset her a bit and she followed him outside to speak to him about his lack of reaction then noticed he was kicking the ball with tears streaming down his face…

Other children may burst into uncontrollable sobs, and some may get very angry. Some siblings may already have kind of worked it out for themselves and are relieved to know for certain.

Any and all of the above reactions are natural, as is the fact that this behaviour can change with lightning speed and  they could become suddenly aggressive or difficult, then just as quickly become clingy or grown up.

It is important to remember a child shows different emotions to different people at different times. Most children behave normally most of the time, with periods of sadness, being clingy or aggressive or angry behaviour.