Life during treatment

Parent and children in a hospital corridor holding balloons

Your child’s whole routine is likely to change during treatment:

  • They are likely to have regular hospital appointments, which may involve a lot of travel. 
  • They may have to stay in hospital overnight for treatment.
  • The treatment may make them feel unwell for a time and may cause changes in their appearance, such as weight loss or hair loss.
  • They may miss out their school or normal social activities and hobbies.

This is likely to have a big impact on you, your child and the rest of the family. In time you will adjust to the new normal, and there are lots of people to give you information and support. Passport – the folder you will be given at CHI Crumlin – has lots of useful information. 

Where will my child have their treatment?

Children’s Health Ireland (CHI) at Crumlin is the national referral centre in Ireland for children with cancer aged under 16. 

Depending on their cancer type, your child may be treated in other Dublin hospitals:

  • Neurosurgical services (brain surgery) at Children’s Health Ireland, Temple Street 
  • Radiotherapy at St Luke’s Radiation Oncology Network
  • Retinoblastoma services at Children’s Health Ireland, Temple Street    

Shared care
Shared care is an arrangement between CHI, Crumlin and 16 hospitals around the country. Shared care means some of your child’s care can be given at a designated centre in your local area. This can help you and your family to avoid some of the travelling to Dublin and let your child be at home as much as possible. 

Your shared care centre will have information about your child’s diagnosis and treatment plan and they will follow the ‘Supportive Care Guidelines’, which are detailed guidelines used in CHI, Crumlin 

For most children living within the Dublin catchment area (Co Dublin, Co Kildare, Co Wicklow), Crumlin Haematology & Oncology Department provides all the care for the patient. Depending on location within these counties some children will attend Drogheda, Portlaoise and Mullingar for shared care.

Example of care that can be given locally

  • Central line care
  • Blood tests
  • Transfusions
  • Treatment for side-effects. 
  • Some chemotherapy

Life in hospital 

Accommodation
If your child is staying in CHI, Crumlin they will be in a room on their own. One parent or a brother or sister over the age of 18 can stay in the room too. There is also separate parents’ accommodation available if required.

  • Parent  Accommodation Unit 
  • Cuan Aoibhinn, ‘Home from Home’
  • Ronald Mc Donald House 

There is a fee charged for staying in all parent accommodation. If you have any financial concerns please contact your medical social worker.

Entertainment
CHI at Crumlin has a playroom, teenagers’ den and a garden with an outdoor play area. Entertainment such as musicians and clowns may also happen when your child is in hospital. 

Visits
Parents can visit at any time. Visits from friends and family can be good for your child. It’s important that anyone who visits is not ill, as even coughs and colds can make your child very sick if your child’s immune system is low.

Check with the nurses about visiting times and any restrictions. 

Isolation
Your child may have to be isolated if they have an infection that is infectious or resistant to drug treatment or if they are at risk of infection, due to a very low neutrophil white blood cell count. This can be difficult for them, as they can’t mix with the other children, for example, at school or in the playroom. They will have to stay in their room.

Usually parents can still visit but the hygiene / infection control rules will be much stricter. They will be able to come out of isolation when tests show that it’s safe for them to do so. Check with the nurses about visiting and isolation restrictions.

Complementary therapies
There are facilities for complementary therapies in the unit for both you and your child. These include relaxation, aromatherapy, reflexology and Indian head massage. They can help ease some of the stress and anxiety you may be experiencing.

Explain how the hospital works

Children may be curious about how the hospital 'works'. Ask a member of staff if they can tell you about how different pieces of equipment work and about the different members of the team you and your child will meet. 

Supporting your child during treatment

Your child may be very frightened along with feeling unwell, while having to cope with the side-effects of treatment. Being away from home, family and friends can also be difficult for a child to cope with. Understandably, this can have an effect on their behaviour. 

Keeping normal discipline during this time is reassuring for your child and can help them feel more secure. Treatment may cause changes in their appearance, such as weight loss or gain, or hair loss. These changes can affect their confidence, especially for older children and teenagers.

It might be helpful to contact CanTeen the nationwide support group for young people, who have or have had cancer. These young people help each other out, encourage each other and work together to overcome their problems and difficulties.

Talking with your child 
It can be hard to know what to say and how much information to give them. Answering questions honestly is best. Some children may not ask questions, but this does not mean they do not want to know what is happening.  Some children may even wonder if they have done something wrong and if it is the reason they have cancer. 

Tips on talking with your child

  • Try to talk openly to your child about their illness and treatment. Openness and honesty encourages trust and security; secrecy can lead to isolation, fear and anxiety for your child.
  • Listening to your child is the best support you can provide. Giving space for them to talk will help them to express their feelings. Your ability to listen and respond calmly will send out the message that even though their illness is difficult, it is not too frightening to talk about.
  • Encourage younger children to draw pictures about the experience of cancer. For example, a visit to the hospital, who they met, what they saw. This can be a good way for them to express their emotions and a chance for you to talk about it together. You can encourage your teenage children to keep a diary. This may help them to express their emotions and feelings. 
  • Don’t feel you have to know the answer to every question.
  • Use clear, simple and age-appropriate language. 
  • Get advice. You can ask the doctors, nurses and medical social workers for guidance on how to talk to your child. There are also booklets available from CCLG and CLIC Sargent that can help you explain the illness and treatment .

My child is too young to understand why he needs treatment. He does not want to come to the hospital. What can I do?

It can be hard if a small child objects to having a treatment that they find needless and unpleasant. Loving firmness is the best approach here. Your child must have the treatment, so avoid getting involved in long arguments. Instead, be firm, very encouraging and loving. Bring your child's favourite teddy or toy, soother or prized blanket to the hospital to help comfort them. Talk to the play specialist for more ideas and support.

Getting support during treatment

Your hospital team will be there to support you. They can answer any questions you might have and refer your child onto to helpful services, so don’t be afraid to ask for help or to get in touch with the hospital if you’re worried about anything or you’re finding it hard to cope.  We have information on other places where you can get support.  

Schooling

Schooling when your child is in hospital

It’s a good idea to stay in touch with your child’s teachers if they are missing classes, so that he or she can keep up with schoolwork as much as possible. 

CHI at Crumlin has a schoolroom, with lessons during term time. Children can take exams in hospital, if needed. The teaching staff at the hospital will contact your child’s teachers to make sure they can continue their schooling whenever they feel well enough.

Should my child go into school during treatment?

When treatment allows, going back to school is a very good idea, even just for a few hours or half days. Being at school can give them some normality away from hospital, build their confidence and let them keep in contact with their friends and have some fun. Some children, especially teenagers, may have some worries about going back to school. This may be because of temporary or permanent changes in their appearance. Or they may worry that they will have missed a lot of schoolwork, or that being away will have affected their relationships with their friends .

Some cancer support centres offer counselling to younger people. Call our Support Line on 1800 200 700 for information. 

For children over 12 who have a had a cancer diagnosis, CanTeen has activities and support groups, which can help them build their confidence and socialise with people who can understand how they’re feeling.

Talking to the school about your child's illness

When your child is able to return to school, give teachers full information about their condition. Contact with infectious illnesses such as chickenpox and measles can be especially dangerous if their immune system is low. It can also be helpful for the school  to let parents of classmates know about possible risks to your child’s health. For example, the principal could write a short letter to other parents warning them about how illnesses such as chicken pox and measles could affect your child.

If your child isn’t able to go to school due to their illness when they’re at home, you can apply for a grant from the Department of Education to pay for them to be taught at home. Ask the medical social worker about this.

Home schooling

If your child isn't able to go into school, you can apply for a grant from the Department of Education to pay for them to be taught at home. Ask the medical social worker about this. 

Barretstown can arrange for someone to visit your child’s school to help their classmates understand cancer better.

Life at home during treatment

Going home from hospital

Your hospital team will organise some of the things you will need at home and let you know about your local Shared Care hospital and other supports and services in your area. They will also prepare you for any medication or care you need to give at home. You will have a plan for when your child needs to attend the hospital and/or the local shared care hospital for check-ups or treatment.

Keeping some normality

It’s good to try and keep your child’s familiar routine as much as possible. Though it’s easier said than done, try not to let the illness take over. The best gift you can give a seriously ill child is a normal, predictable environment and a loving family. In general, children feel more secure when the normal home rules continue to apply. Many parents find it helpful to ask family, friends and neighbours not to give too many gifts to their child and not to forget brothers and sisters when they’re giving gifts and attention.

Play and socialising

If your child has been given permission from the hospital to mix with other children, then encourage them to do so. They need the company of children their own age. Your child will benefit from the give-and-take of social contact and the feeling that they are like other children. Play can boost a sick child’s morale and self-esteem.

Family outings are still important. Avoid bringing your child to very crowded areas and check with your medical team if you have any worries. If you wish to bring your child to the cinema, shops, church, avoid busy times.
If you’re child isn’t able to get out much, arrange some form of activity for them during the day. Toys, playing cards, board games, jigsaws and video games, art and books can help to pass the time. Sending texts and emailing friends will keep older children busy.

You might like to sign them up for a residential camp, such as Barretstown. This is a specially designed camp for children with serious illnesses and their families, based in Ballymore Eustace in Co Kildare. It offers a range of adventurous and challenging activities, free of charge, which are supported behind the scenes by health professionals. Ask your child’s specialist nurse or medical social worker for more details.
 

Staying safe

You child is likely to be more at risk of infection during their treatment. Common illnesses can make them very sick. The hospital will advise you about safety precautions such as handwashing, avoiding crowds and food safety. You can see more about preventing infection here.

Medical care at home

You may feel nervous about giving medical care to your child. For example, you may have to care for their central line, feeding tube or give chemotherapy tablets at home. You may also worry about coping with side-effects. Your medical team will give you lots of support and information before you go home, and you will have telephone numbers to call if you have any questions or worries . 

Diet

It’s important that your child eats as well as possible during their treatment. Eating well can help them to cope better with their treatment, fight infection and recover after treatment. 

Cancer and its treatment can make it harder for children to eat well. For example, they may feel sick, lose their appetite, find it hard to swallow or find food tastes strange. Most children with cancer will have difficulty with eating or drinking at some point. Tell your medical team if your child is having any problems – they can refer you to a dietitian, who can help you.

If you have a medical card, your local pharmacist can only dispense a week’s supply of medication from a hospital prescription. So you will need to bring the hospital prescription to your GP so that they can write a new one for you.

For more information

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1800 200 700

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