How does the psychology of a child with leukaemia change with age? Practical tips for families on play, school, hair loss and isolation during long treatment.
In the corridors of a children's oncology ward, drip stands and toy cars move side by side. One mother is noting down a medication time while the child in the next bed watches cartoons on a tablet and another challenges a nurse to see "who can blow up the most balloons". A leukaemia diagnosis suddenly reorganises a family's life around the hospital calendar. Treatment usually takes a long time, and throughout it the child is both a patient and still a child who is growing, playing and curious. When we talk about the psychology of a child with leukaemia, the real question is this: how can we protect childhood on such a hard journey? In this article I look at what a child may go through depending on their age, the attitudes that help families support them, and when extra support may be needed.
How Does a Leukaemia Diagnosis Change a Child's World?
A child's world is defined by their home, their family, their school, their games and their friends. With a leukaemia diagnosis, almost every part of that world changes. The hospital becomes a second home for a long time. Adults they do not know touch their body, give injections, take measurements. They cannot go to school, cannot see their friends and are sometimes separated even from their brothers and sisters.
What is more, because there are periods during treatment when immunity is low, the child may be kept away from crowds, the park and visitors. This isolation can be as hard as the illness itself. For a child, the sentence "My friend invited me to her birthday party but I can't go" is a far more concrete loss than any medical explanation about the illness.
The weeks spent at home between phases of treatment carry their own feelings, too. The child is happy to be back home, but at the same time has to live with new rules such as wearing a mask, staying away from crowds and having their temperature taken. Home is no longer the carefree place it used to be; the parents' constant alertness can rub off on the child. Explaining in advance what to expect makes these transitions easier.
Children react to these changes in different ways. Some withdraw, some get angry and some adapt surprisingly well. None of these is the "wrong" reaction.
How Does the Psychology of a Child With Leukaemia Differ by Age?
Babies and toddlers (0–3 years)
Children of this age do not understand the illness, but they feel separation, pain and disrupted routines very intensely. Their greatest need is the closeness of a familiar adult. A parent staying with them as much as possible, a blanket or toy brought from home and familiar lullabies support their sense of security. Regression in sleep and eating patterns is common during this period.
Pre-school children (3–6 years)
At this age children are prone to magical thinking. They may see the illness as a punishment for something: "Did I get ill because I hit my brother?" It is very important to tell them clearly, "This illness did not happen because of anything you did; it is nobody's fault." For children of this age, medical procedures are the biggest source of fear. Giving short, honest information just before a procedure, and saying "It might hurt a little, I'll hold your hand" instead of promises you cannot keep such as "It won't hurt", protects their trust.
School-age children (7–11 years)
School-age children want more information and ask questions: "Why is my blood ill?", "When will I go back to school?" At this age it is possible to explain in simple language what the illness is and why treatment is needed. For example: "Some of the cells in your blood that protect your body aren't working properly; the medicines are trying to put them right." During this period, falling behind at school and with friends, and looking different from others, become significant worries.
Children entering adolescence (12 years and over)
In children approaching adolescence, body image, peer acceptance and independence come to the fore. Changes in appearance such as hair loss, weight change or a puffy face can be a source of deep embarrassment. It is important to involve young people of this age in treatment decisions as far as possible and to make room for them to ask the doctor their own questions.
The Psychology of a Child With Leukaemia in Long Treatment: Common Feelings
Fear and anxiety
Procedures such as injections, blood tests and lumbar punctures can create anticipatory anxiety in a child. Some children start to cry or feel sick as they approach the hospital. This reaction is a learned fear, not the child being "spoilt".
Anger and rebellion
Children ask "Why me?" too, but they often express it through behaviour rather than words. Hitting a nurse, spitting out medicine or shouting at their parents can be the language of anger. It is important to keep boundaries while not forbidding the anger itself: "You're allowed to be angry, but no hitting the nurse. You can show how cross you are by punching the pillow."
Regression
A child who has been toilet trained starting to wet themselves again, sucking their thumb or talking like a baby are common reactions to stress. They are usually temporary and show the child's effort to take refuge in a safe place during a hard time.
Mood swings
Medicines used during certain phases of treatment can affect appetite, sleep and mood. A child suddenly becoming very irritable, tearful or constantly hungry can take the family by surprise. Always ask your treatment team whether these changes are related to the treatment; knowing what to expect reduces your anxiety.
How Should the Family Approach a Child With Leukaemia?
Give honest, age-appropriate information
Hiding the illness from a child does not protect them. Children always sense that something is wrong from adults whispering, from eyes red from crying and from changes in routine. When they are not given information, they fill the gap with their own imagination, and that is usually more frightening than the reality. I have written in detail about how you can tell a child about their illness in the article on explaining an illness to a child.
Keep routines and rules
Creating a daily routine as far as possible, even in hospital, gives a child security: washing their face in the morning, breakfast, playtime, lesson time, a bedtime story. If all the rules disappear because of the illness, the child's world becomes even more unpredictable. It is important to keep the difference between showing love and granting every wish.
Make room for play
Play is the child's way of expressing feelings and making sense of experiences. Putting a drip on a doll, playing doctors and drawing the hospital help them process what they have been through. Rather than seeing these games as "dark thoughts" and stopping them, it is more helpful to join in and watch with curiosity. I have also described what play means for a child in the article what is play therapy.
Offer choices
Illness takes away a child's sense of control. There is no choice about medical procedures, but there can be choices in small matters: "Would you like to take your medicine with orange juice or apple juice?", "Shall we sit on my lap or on the bed while they take your blood?" These small choices help the child feel less helpless.
Keep school and friendships going
During long treatment, it is important that the link with school is not broken. Hospital school, home tuition or video calls with classmates preserve the child's sense that "I'm still a pupil, I'm still part of my class". Drawings and letters sent by classmates often become the most treasured things in the hospital room.
Prepare together for changes in appearance
For many children, hair loss is the most visible and most talked-about part of treatment. Explaining in advance, calmly, that it may happen prevents the child from being caught off guard. Some children want to decide for themselves to have their hair cut short or to choose a hat or a bandana; others prefer to go around without anything. Whichever it is, it matters that the decision belongs to the child. Letting grandparents and visitors know in advance, so that they do not react with shock, protects the way the child sees themselves in the mirror. After checking with your doctor, you can also explain to the child that their hair will grow back over time once treatment ends.
Don't forget the siblings
During long treatment, it is inevitable that the family's attention turns to the ill child. Siblings may feel jealousy, guilt, fear and loneliness. They too need regular time and an age-appropriate explanation of what is happening. I have written about this in detail in the article on the sibling of an ill child.
What Should and Shouldn't Be Said?
The sentences below are fictional examples.
Sentences you may want to avoid saying to the child:
- "If you cry, the doctor will get cross." (It forbids the feeling and makes the healthcare team seem frightening.)
- "If you're strong, you'll get better quickly." (On days when they feel bad, it can make the child feel guilty.)
- "Look, the boy in the next room never cries." (Comparison belittles the child's feelings.)
- "It won't hurt at all." (When it does hurt, the child's trust in you is shaken.)
Sentences you might try:
- "It's completely normal to be scared. I'm here, and I won't let go of your hand."
- "You've had a really tiring day. What would help you feel a bit better?"
- "When your hair falls out you might look different, but you'll still be you."
- "If anything worries you, you can always ask me, and whatever I don't know we'll ask the doctor together."
Leukaemia affects a child's body; but love, play and a consistent routine go on protecting their childhood.
The Parents' Own Burden
Being the parent of a child with leukaemia means months of exhaustion. The parent who stays in hospital as the child's companion lives with sleeplessness, loneliness and a constant state of alert. The parent at home is torn between the other children, work and the household. In many families in Turkey the burden of staying with the child in hospital falls on the mother; the father having to carry on working can cause the couple to drift apart. Families who come to a centre in a big city for treatment carry the extra burden of being far from home and relatives, staying in rented flats or in patient guesthouses.
When parents suppress their own feelings, it can lead to burnout in the long run. Spouses taking turns at the bedside, asking grandparents for help and creating some time for oneself, however short, are not luxuries but needs. The psychology of a child with leukaemia is also closely linked to the parent's state of mind; a rested, supported parent can offer the child a calmer kind of closeness.
When Should You Seek Professional Support?
During long treatment, fluctuating feelings are to be expected. However, in the following situations it may help to get support from a child mental health professional:
- The child withdrawing for weeks and losing all interest in play
- Very intense and increasing panic before medical procedures
- Frequent nightmares and constant expressions of fear
- Aggression or anger clearly disrupting daily routines
- Intense anxiety about the illness continuing even after treatment ends
- A parent being unable to sleep for long periods, crying constantly or feeling they have collapsed
If there is a marked deterioration in the mood of the child or a parent, an assessment by a psychiatrist may also be needed. This assessment should be planned together with the paediatric oncology team running the treatment.
How Is a Child With Leukaemia Supported in Therapy?
Many children's oncology centres have support teams made up of a psychologist, a social worker and a child development specialist. You can ask your treatment team whether this is available at your hospital.
When working with children, the main tool is play. In child-centred play therapy, the child expresses their fears, their anger and their hospital experience through toys in a safe setting. The therapist accompanies the child in their world without directing them. With older children, drawing, stories and simple cognitive behavioural techniques can be used: relaxation exercises before procedures, noticing frightening thoughts and meeting them with more realistic ones.
Sessions with parents are also an important part of the process. Working with the parent's own anxiety, guilt and tiredness can help them accompany their child more calmly. In child and play therapy, parent sessions can also take place online when leaving home is difficult during treatment.
Frequently Asked Questions
Should I tell my child with leukaemia the name of their illness?
Generally yes, in language suited to their age. Knowing the name of the illness helps the child make sense of what they hear in hospital and reduces the feeling that "there is a secret". You can plan the language you will use together with the psychologist or child development specialist on the treatment team.
My child has become very spoilt during treatment. Is this normal?
It is very understandable for families to relax the rules during long periods of illness. However, removing boundaries altogether can make a child more unsettled. Keeping basic age-appropriate rules while continuing to show love and affection gives the child security.
Will my child go straight back to how they were when treatment ends?
The end of treatment is an important milestone, but psychological adjustment can take time. Going back to school, rebuilding friendships and anxiety around check-ups can bring new challenges. It helps to let your child move at their own pace and to seek support if needed.
What should I tell my child when another child on the ward dies?
Children can form close bonds with their friends on the ward and will certainly notice a loss. It is important to give an honest, short, age-appropriate explanation, to allow time for their questions, and to answer the question "Will the same thing happen with my illness?" based on what your doctor has told you. You can ask the psychologist on the treatment team for support with this conversation.
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Eda Erkan Alapala
Klinik Psikolog. İstanbul Kent Üniversitesi Klinik Psikoloji Tezli Yüksek Lisans mezunu; bilişsel davranışçı terapi, çocuk merkezli oyun terapisi ve çocuk-ergen psikoterapisi alanlarında eğitimlerini tamamlamıştır.
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