My child is having a transplant

Introduction

After hearing your child needs a stem cell transplant, you might feel a range of emotions, from fear to relief.

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.

We've produced three activity books for children who are having a stem cell transplant, to help them understand the processes, words and feelings they may encounter. They're available for free as a complete set, which includes a guide for parents, from our booklets page.

You can also download them here:

• Going to hospital for my stem cell transplant activity book (PDF 870KB)
• Having my stem cell transplant activity book (PDF 820KB)
• Coming home after my stem cell transplant activity book (PDF 890KB)
• Helping your child through their stem cell transplant (PDF 440KB)

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 that you might find useful.

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

The Anthony Nolan Recovery section also provide information about what to expect during this time, and where to get more help when you need it.

Preparing for transplant

Many parents find that being prepared for the approaching transplant helps them to cope with the situation.

If possible, try to visit the hospital ward beforehand to familiarise yourself with the surroundings and hospital staff. It might be a good idea to take your child along too, if you think it could settle their nerves. You should also check how often you can visit and the arrangements for staying overnight.

Talk to your child’s teacher or head teacher regularly to update them about the situation. They need to be made aware of the time off your child is likely to have, and the support the school will need to provide when they return.

When your child is in hospital they are entitled to continue their education. When they are fit and well enough, your child’s school or local council will provide the support needed to do this. If you have any concerns about this, talk to someone at the school so that plans can be put in place.

Helping your child to understand

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

Take time to explain to them 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, and encourage them to ask questions so you can fill in the gaps.

For whatever reason, your child may not want to follow the rules surrounding infection control, or understand how important they are post-transplant. If this becomes a problem, try making it a child-friendly experience that’s silly or fun. At the end of the day, you know your child better than anyone else, what makes them happy and how they are likely to respond.

It’s important to involve any brothers and sisters too, and see if they have any questions. They might not have the confidence to say they don’t understand, or they could be feeling left out if the family’s attention is focused on their sibling and their treatment.

Our activity books for children (above) help to explain stem cell transplants to children. More advice on speaking to children about cancer is also available 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 of friends and family in place to help you when you need it. Make sure there are people you can talk to about your situation and how you are coping, or who can take your mind off things for a bit. Don’t feel guilty about laughing and forgetting about your stresses for a short time.

If people offer to help but you don’t know what to say, these suggestions might come in useful:

• Childcare – If you have other children who need looking after while you’re at the hospital.
• Pets – Ask if they wouldn’t mind popping in to feed your pets or taking them for a walk.
• Batch cooking – Having a freezer full of prepared meals comes in handy when you don’t have time or energy to cook. 
• Housework – Making sure your house is clean can help reduce the risk of spreading infections.

Support for you

In person – Purpose-built cancer centres, like those provided by Maggie’s and Macmillan, offer free emotional, practical and financial support to people looking after someone going through cancer treatment. Your hospital or local charities may run support groups that 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. The Macmillan forum also has a page dedicated to parents of children with cancer.

Talking therapy – If you decide you need to talk to a trained therapist about anything, you can access them through your GP or child’s medical team.

Financial - Depending on where you work, you may be able to have a period of paid leave to help look after your child as they recover. Talk to someone in your HR department to see how they can support you during this time.

You may also be able to access certain benefits provided by the government such as Carer’s Allowance. For more information please see our Help with your finances page or visit the Citizens Advice website.