In Treatment
Introduction
When a child or teen is diagnosed with cancer, life changes in an instant. While treatment paths and durations will vary, commonly, this experience often brings with it a wide range of emotional, physical, and practical challenges for most families. As a parent, you may find yourself juggling hospital visits, managing side effects, supporting siblings, and trying to maintain a sense of normality amidst uncertainty.
Your own identity has probably changed significantly since treatment began. You may have gone from working or being a stay-at-home parent, to now being a carer and feeling like a nurse, rather than just a parent.
This page is here to support you, offering tailored information and resources to help.
Looking after yourself
Self-care is probably the last thing on your mind at the moment, but we have put it first for a reason. Parents are the foundation of the family and we know that if we (and you) look after parents, we are ultimately looking after your family too.
It can feel almost impossible to do this when your family is in crisis, but it’s important to try to find ways to look after your own physical and mental health.
Ask for help if you need it. People are often willing to help but unsure how they can best support you. Think about small things that fill your cup and avoid things that drain your energy. Maybe a regular walk with a friend would help, or someone to drop in a meal or getting out for an hour by yourself for a coffee.
If you are going through this as a couple, it’s very easy to forget about your relationship and each other as you focus on your children. Try to make time for each other. If a friend or family member is able to mind the kids for an hour, prioritise going for a lunch or dinner or even a swim or walk together – whatever works for you.
Sometimes, the most comforting support comes from someone who truly understands and has walked a similar path. Through our Parent Peer Support Programme, we can connect you with another parent who has experienced a childhood, adolescent or young adult cancer diagnosis. They’re here to listen with empathy, share their experiences and signpost to any supports that might be helpful.
We also offer one-to-one psychological support – a safe and nurturing space for children, young people and parents to gently explore their emotions, make sense of their experiences, and feel supported every step of the way.
All of our supports are available to families at every stage of this experience but some may be more suitable for different stages so you’ll find more information in the Finished Treatment section if you are nearing that stage.
Julie Wren Complementary Therapy Service
The Complementary Therapy Service on St. John’s Ward in CHI at Crumlin provides a range of holistic complementary therapies to patients and their parents/guardians when in hospital, including massage, reflexology, Indian head massage, baby massage and aromatherapy.
Children In Hospital Ireland Volunteers
If you are in hospital with your child and need a short break or need to step out for a moment, make a phone call or speak to the medical team, Children in Hospital Ireland volunteers are available to stay with your child and keep them entertained. You can request support online.
Asking for help
Your family and friends may have lots of questions, and that’s completely understandable. Some parents find it helpful to set up a WhatsApp group (or similar) with close family and friends. This can make it easier to share updates without having to repeat information individually.
A group chat can also be a useful way to ask for help with practical tasks or childcare. Sharing your needs with the group allows people to decide how they can best support you, without you having to approach each person separately.
Supports for your child and siblings
Being in treatment, whether it is for a few months or two years, can be challenging for everyone in the family. Regular hospital appointments, inpatient stays and a lot of travel and time away from home cause disruption from the normal routine. You and your child (depending on their age) are probably now well versed in the new medical language that is part of this experience.
The child or young person who is sick may be feeling unwell and dealing with the side effects from treatment and steroids. While they, and their siblings, may also be feeling isolated and worried or even angry and jealous.
Emotional Supports
We support children, young people and siblings emotionally during treatment in a number of ways, including:
Beads of Courage®
Play therapy or psychotherapy for children, teens and siblings
One-to-one psychological support for teens, young adults and siblings
We also refurbish inpatient and treatment rooms in paediatric hospitals, helping to create a comfortable and friendly environment for families, as well as creating spaces and inpatient rooms for adolescents and young adults, who are being treated in adult hospitals
Steroids
Steroids are often necessary as part of treatment but the side effects can be very challenging to manage, for the patient themselves and for the rest of the family.
We don’t have any magic fixes to offer, just understanding. It may help to connect with a parent peer supporter who will also have experience and can empathise and may have some tips to share.
Keep a notebook
Keeping a physical diary or shared online document can be useful, especially if handing over care duties to another parent, family member or friend. It can be as simple or as detailed as you want – some useful topics to keep note of are:
- Consultant / specialist names and expertise
- Medication and schedules
- Date and time of any symptoms or changes in condition
- Questions each parent has for the medical team (in case one is not present when the team comes around). You can also add answers here to refer back to.
Blood Bikes
This is a wonderful service which will (subject to availability) collect blood samples from your house and deliver them into the hospital for you.
School
One of the most difficult aspects of missing school is the social impact – being away from friends, missing out on sport and activities, and losing that daily connection to normal life.
Pre-school and childcare
If your child or their sibling is attending creche, ECCE or childcare and availing of the National Childcare Scheme (NCS) subsidy, there is an Absence/ Under-Attendance Exemption available.
In order to qualify for the subsidy, children must attend all hours they are claiming. However, if a child receives a cancer diagnosis, they or their sibling may be eligible for the exemption and retain the subsidy. Siblings may not be able to attend their creche, ECCE or childcare as regularly as usual, depending on how their sibling is doing and what family arrangements are in place.
If your child or their brother or sister is in creche, ECCE or childcare and you get the National Childcare Scheme (NCS) subsidy, there is an exemption that you may not be aware of.
Normally, your child must attend all the hours you are claiming for, in order to keep the subsidy. But if your child is diagnosed with cancer, the exemption means:
- Your child can keep their subsidy even if they cannot attend all their hours.
- Their brothers or sisters can also keep their subsidy if they miss a lot of days or hours because of changes in family routine.
Contact the NCS Support Centre on 01 906 8530 for information and guidance on how to apply and visit the NCS website for relevant forms.
Primary school
For primary school children, it can be helpful to keep in touch with their teacher so that they can keep up to date on the news from school, and some schoolwork if they feel up to it.
When your child is able to return to school, it may be on a part-time basis to start off. Talk to the principal or class teacher about how your child is doing, any side effects that they may be experiencing, such as nausea, and put accommodations in place as needed.
Secondary school
For teens, keeping up with friends through gaming, texting or social media, will be a vital outlet. If they are keen to keep up to date with school, you can make a plan with their year head or class tutor to have work sent to them.
At this stage, keeping in touch with school in whatever way they can manage is important from a social perspective. The academics will follow in time but keeping up with the news from friends and peers is so important.
When your child is ready to return to school, talk to the year head or class tutor so that you can work together on any accommodations that your child might need. They may only be able to attend part-time at first, building up slowly as their energy allows.
Accommodations could include no homework and not being asked about homework, locker placement, access to accessible toilets or even a lift, depending on your child’s needs. Make sure that you have one point of contact for the school and that they are able to communicate any agreed accommodations to other teachers.
Institute of Education
If your child is in an exam year, they may feel up to sitting one or two exams so that they feel part of their peer group and take part in that shared experience. Childhood Cancer Ireland has developed a partnership with the Institute of Education so that students who have / had cancer can access free part-time courses and grinds.
More information for teenagers
For teens and young adults, you’ll find more information on education in the I am an Adolescent or Young Adult section you may find some helpful information on previous webinars we have held on this topic.
Our Lady’s Hospital School
Our Lady’s Hospital School in CHI at Crumlin provides for the education of children and adolescents who are attending hospital. Principal Fergal McNamara was a guest on our podcast and spoke about why school life is so important. Listen here.
Patients’ attendance at the hospital school will be recorded and reported to their own school. Teaching is available at the bedside or in the school room, depending on what is appropriate for the patient.
Barretstown
Barretstown runs a school education programme, which can help your child or sibling’s classmates to better understand childhood cancer.
Whether primary or secondary school, remember to ask the principal to send a letter to all parents asking them to advise the school if any family member is affected by measles or chickenpox, as your child will need to remain out of school for a period of time in this case.
Home tuition
The Department of Education provides home tuition for children and young people with a childhood or adolescent cancer diagnosis who are unable to attend school on medical grounds. This may be of interest if your child’s treatment means that they are missing significant periods of school.
Family events
Childhood cancer can be a lonely experience. Trying to avoid infections means missing out on get togethers, parties and other social occasions. Childhood Cancer Ireland holds different family events throughout the year. If your child is well enough and you’re able to attend, it’s an opportunity to meet other families and build a community of others with a shared experience.
Financial assistance
Having a child with cancer also brings additional costs, such as travel, accommodation, food and car parking, to name a few. Along with a diagnosis, many families face a sudden loss of income as one parent stops working to care for their child and attend hospital appointments and any in-patient stays. On top of that, arranging care for siblings or other family members can add further stress and logistical difficulties, which can be overwhelming.
You may have already availed of the financial assistance grants available. If not, you’ll find information in the Newly Diagnosed section.
Childhood Cancer Ireland’s Financial Advice Service can help you navigate your way through the assistance that is available during treatment or to figure out what financial products (such as insurance) you may have yourself that could help.
You may also be able to claim some tax relief for additional health care expenses for a child.
Webinars
We hold expert-led webinars on a range of topics, including education and parenting while your child is in treatment. You’ll find a full list of previous recordings and upcoming webinars here.
Having your voice heard
Through our advocacy work we give a voice to the quietest people in the room – children with cancer.
We ensure that survivorship and the long-term impacts of a cancer diagnosis and treatment, which may impact both physical health and emotional wellbeing, are recognised and supported in both policy and practice.
The annual CAYAS Conference (Childhood, Adolescent and Young Adult Cancers & Survivorship) highlights the lived experience of parents, families, patients, and survivors by providing them with a platform to collaborate and connect with medical experts, healthcare researchers, and others.
If you would like to get involved in advocacy in any way, or to share your experience, contact us.