My child is having a transplant

Introduction

Some parents and guardians are thankful that a potential cure is finally an option for their child. Others feel overwhelmed as they try to understand lots of new and complex information.

It can be a very challenging and emotional time for everyone involved. It’s essential that you get the support and help you need so that you can support your child and, importantly, yourself every step of the way.

Being informed

If your child is under the age of 16, you will have to give consent for the transplant to go ahead. Your child’s medical team will talk you through all the possible options and answer any questions you have.

Don’t be afraid to ask questions more than once if you haven’t fully understood. It’s a stressful time for you and the team will understand. Take time to think about the questions that are important to you. Our meeting your consultant page has some suggestions you might find useful.

In the weeks and months after the transplant, your family will be supported by a clinical nurse specialist (CNS) or a transplant co-ordinator. They will check everything is going OK and answer any questions you have.

Our Recovery section also gives information about what to expect during this time, and where to get more help when you need it.

Preparing for transplant

Many parents find being prepared for their child’s transplant helps them cope.

If possible, try to visit the hospital ward in advance. Get familiar with the surroundings and hospital staff if you can. It might be a good idea to take your child along too, if you think it could help them feel calmer.

Check how often you can visit, and the arrangements for staying overnight.

Education

Talk to your child’s teacher or head teacher on a regular basis to keep them updated on your child’s condition. They’ll need to know:

• how much time off your child is likely to have
• the support the school needs to provide when they return.

Your child is entitled to continue their education when they’re in hospital. So, when your child’s fit and well enough, their school or local council will provide the support needed for this to happen.

If you have any concerns about this, talk to someone at the school. They should put plans in place.

Helping your child to understand

Having a stem cell transplant and a hospital stay can be difficult and stressful for children of all ages. They could be anxious about the unknown, the future, and staying in an unfamiliar hospital.

So, if you can:

• Take time to explain what’s going to happen. (Hopefully, the information in our Understanding stem cell transplants section has helped you to understand the process better.)
• Try to not overload them with too much at once.
• Encourage them to ask questions so you can fill in the gaps.

Infection control rules are important post-transplant. But your child might find them hard to understand and follow. Or they might not want to!

If this becomes a problem, try making it silly or fun – a more child-friendly experience. At the end of the day, you know your child better than anyone else. You know what makes them happy and how they are likely to respond.

It’s important to involve any brothers and sisters too. Check if they’ve got any questions, as they might lack the confidence to say they don’t understand. Or they could be feeling left out if the family’s attention is all on their sibling and their treatment.

Our activity books for children help explain stem cell transplants to children. You can find more advice on speaking to children about cancer on the Macmillan website.

Looking after yourself

Your child will understandably be nervous and even frightened about what they are going through.

They will look to you for support and reassurance that nobody else can give them.

So, you need to make sure you’re looking after yourself both physically and mentally during this time.

After all, this is probably the hardest thing you’ve ever had to go through too.

Asking for help

Try to get a support network in place. This could include your family, friends, or anyone you can trust to help you when you need it.

Think about who you can talk to about your situation and how you are coping. Do you know someone who can take your mind off things for a bit? There’s no need to feel guilty about forgetting your stresses for a little while. It’s OK for you to have a laugh, or a good chat about something else.

To avoid being stuck for words when people offer to help, maybe think of some ideas in advance. These suggestions might be useful:

• Childcare – can they look after your other children while you’re at the hospital?
• Pets – would they mind popping in to feed your pets, or take them for a walk?
• Batch cooking – could they cook some meals to go in your freezer? Sometimes you haven’t got the time or energy to cook.
• Housework – can they help you keep your house clean? This will help reduce the risk of spreading infections.

Support for you

In person

You’re entitled to free emotional, practical and financial support from purpose-built cancer centres, like those provided by Maggie’s and Macmillan. This is because you’re looking after someone undergoing cancer treatment. Your hospital or local charities may also run support groups you can attend, too.

Online

You can discuss a wide range of topics with other transplant recipients and their carers on our Patients and Families Forum. There’s also a page for parents of children with cancer on the Macmillan forum.

Talking therapy

If you need to talk to a trained therapist about anything, you can find one with help from your GP or child’s medical team.

Anthony Nolan also offers a free Telephone Emotional Support that is available for you or anyone over 18 in your family.

Employment support

Depending on where you work, you may get a period of paid leave to help look after your child as they recover. Ask your HR department how they can support you during this time.

You may also be able to take unpaid carer’s leave and parental leave. These are rights that do not depend on who employs you, though you need to check if you’re eligible.

You may also be eligible for certain government benefits, like Carer’s Allowance. For more information, please see our Financial support page. Or visit the Citizens Advice website.