Newly diagnosed
Introduction
If your child has been diagnosed with cancer, you are likely trying to navigate the uncertainty of what comes next and may be feeling overwhelmed, afraid and powerless.
Here, you will find practical information and advice to support you in this early stage. When you feel ready to take in more information, you’ll find it in the In Treatment section.
If your child is a patient on St John’s Ward, you will have received a yellow folder called the patient passport. This contains a wealth of information including guidelines for fevers, as well as a list of charities that support families at the back of the folder.
Life During Treatment
Your family’s routine is likely to change during treatment.
There will be regular hospital appointments and perhaps some inpatient stays, which may involve a lot of travel for the child and parent. This can mean a lot of disruption to work, siblings’ lives at home and school and social lives.
The treatment may make them feel unwell for a time and may cause changes in their appearance, such as weight loss or hair loss, which can be difficult.
Nutrition
It is common for children’s taste and tolerance for food to change during treatment. Don’t be surprised if they no longer eat foods that they previously loved. Talk to your consultant about any changes or concerns you have in relation to your child’s diet and they will provide the appropriate nutritional guidance.
It can be helpful to talk to someone who truly understands – someone who’s been there. Our Parent Peer Support Programme can connect you with another parent who has faced a childhood, adolescent or young adult cancer diagnosis and is here to listen, share, and support.
We also offer one-to-one psychological support, providing a therapeutic and compassionate space which supports children, young people and parents to process their experiences and emotions.
Infections
Children with cancer are more at risk of infections because of the disease itself and also because of the treatment. Families are advised to contact their team if your child has a temperature or is feeling unwell and you are concerned. If in any doubt, it is better to call.
To minimise risk, it is recommended to keep your child away from sources of infection, such as sick relatives or crowded places. Please don’t beat yourself up if your child develops a fever or infection – sometimes it is unavoidable and is a natural response to neutropenia.
It is important to keep your child away from measles and chickenpox in particular. This can be challenging for everyone as it may mean missing out on birthday parties and other social occasions and can leave everyone in the family feeling isolated.
Medical supplies
You may find that you suddenly have supplies like NG dressings, feed bottles and pump supplies, syringes, Hickmann dressings, tape, etc at home. It can be hard to figure out what to get and then where to put it all. Clear out some space to keep these supplies organised and do a quick check each week to identify what is running low so that you can contact the relevant supplier (public health nurse / pharmacist/ hospital) before things actually run out. This is particularly important coming up to public holidays or Christmas, when a lot of services have reduced hours.
Hospital stays
Given the number of hospital visits your child may have during the course of their treatment, it is a good idea to keep a bag ready with the essentials, such as pyjamas for both of you, wash bag and favourite games, movies, books, technology and chargers that help pass the time in hospital.
In CHI at Crumlin, the hospital shop has a parent’s club, offering a discount for patients who have an inpatient stay over one week. Parents can email parentsclub@aramark.ie to sign up.
For younger patients, if the parent is breastfeeding, they are entitled to a free meal at the hospital canteen in CHI at Crumlin. Ask your nurse for more information.
School
Missing out on school means more than missing out on classwork and homework, it’s the friends and social interaction that children and teens miss the most. For now, keep in touch with their teacher, year head or class tutor to let them know about your child’s diagnosis. Don’t worry too much about academics and schoolwork at this stage, but it may be helpful for your child to keep up to date on school news through their friends.
When you’re further into treatment, you can read more information and advice on school in the In Treatment section.
Caring for our Super Sibs
Siblings can be deeply affected by their brother or sister’s cancer diagnosis. This can be an additional worry for parents, at an already difficult time.
As parents, we often worry that telling a sibling their brother or sister has cancer will upset them too much. Or that they’re too young to understand. But children are very good at picking up when something ‘big’ is going on. It’s important to talk to them openly and honestly so they don’t imagine the worst.
Children can also feel angry and lose trust if they feel a parent isn’t being truthful with them. Talk to your child’s sibling at diagnosis. This may feel very hard but talking and explaining is always better than trying to avoid the subject – even for little children.
Answer questions as they come up. Be open and honest; this helps your sibling child to trust you. Keep siblings up to date if things change. They will also need more detailed information as they get older.
You may also need to think about childcare for siblings while you are in hospital or at appointments. Ask family or friends to help if possible. Often people are only too happy to help with a specific task like looking after children, taking them to school or an activity or cooking a meal.
Help with practical tasks
Hand in Hand is a national charity that provides practical and emotional support services to families affected by childhood cancer. This includes household cleaning services, laundry, and family meals during the child’s active treatment.
Work and finances
Looking after a sick child can cause financial challenges, especially if a parent needs to take a step back from work. Travel, accommodation and having to organise the care of families around medical appointments, can add further pressure.
Talk to your employer and let them know about your child’s diagnosis. Don’t worry if you don’t have all the answers straight away. When you know your child’s treatment plan, you can talk to your employer again and see what supports may be available, such as carers leave, parental leave or sabbatical leave. Some companies are in a position to offer special paid /compassionate leave in extenuating circumstances.
If you have life insurance, check to see if it provides serious illness protection for your child or income protection – see below for help with this.
Financial assistance
As a first port of call, you can speak to the medical social worker who can provide guidance on the supports and grants available to you such as:
- The Irish Cancer Society’ Children’s fund grant
- Cliona’s Foundation financial aid grants
- Aoibheann’s Pink Tie financial aid grants
- The Travel 2 Care Grant – administered by the Irish Cancer Society and funded by the National Cancer Control Programme
- Gavin Glynn Foundation’s treatment abroad financial assistance grants
You can also avail of Childhood Cancer Ireland’s Financial Advice Service, which 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.
Tax relief
Revenue has information on what and how to claim relief for additional health expenses. Additional health care expenses for a child. Keep receipts for relevant expenses in one place so that you can revisit this claims process when time and head space permits.
Parent Accommodation & Services
CHI at Crumlin
In CHI at Crumlin, one parent is permitted to stay with their child while in hospital. There is parents’ accommodation on the second floor of the hospital with bathroom and shower facilities available, as well as common areas and kitchens to prepare snacks. Milk, bread and other basic provisions are supplied. Takeaway food is delivered from local outlets such as Dominos, Subway etc.
These rooms are available to parents/ guardians only. Children/ siblings of the sick child (unless being breastfed) are not allowed access to this unit. Talk to staff regarding current room rates.
Ronald McDonald House
The Ronald McDonald Charity operates two houses. One is on the grounds of the hospital and the at 45 St. Mary’s Drive, Crumlin. The house on the grounds of the hospital has 16 en-suite rooms with TV, laundry facilities (for a small charge) and fully equipped kitchens. Towels and bed linen are provided.
The house also has free Wi-Fi, a fully equipped playroom, sitting room with library and other relaxation areas. The second House is a smaller building with four en-suite bedrooms and a communal kitchen/ dining and recreation area. It also has a garden and parking.
The accommodation is available to families who reside outside the greater Dublin area. There are lengthy waiting lists to access this “home from home” so it’s highly recommended that parents contact the Ronald McDonald team at the earliest opportunity to request a room or be added to a waiting list.
Phone (01) 4560436 or email ronaldhouse@rmhc.ie
The Louis Fitzgerald Hotel
The hotel The Louis Fitzgerald Hotel offers reduced rate rooms to families attending the hospital. This must be arranged through Parent Accommodation.
Phone: 01 4096622
Aoibheann’s Pink Tie
Aoibheann’s Pink Tie offers hotel accommodation to parents and children undergoing treatment for childhood cancer. If you would like further information on how you can avail of this service please contact linda@aoibheannspinktie.ie or phone 01 2401332 / 086 3533897.
Car Parking
Car parking at CHI at Crumlin is very limited and, between the hours of 9am to 4pm, there is a high demand for car parking spaces. Parents/guardians of inpatients who stay more than 10 days at a time, qualify for a reduced car park rate. Please ask your child’s nurse for an application form. Reduced car park rate is €36 for the first week and €10 per week thereafter.
Families can avail of the public car park in Iveagh Grounds, Crumlin Road, Dublin 12, a 10-minute walk from the hospital, at a cost of €2 per day. This car park is not operated by the hospital and is used by the general public.
If you are at another hospital, ask about reduced parking rates.