Hearing that your child needs a stem cell transplant can make you feel a wide 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 every step of the way. Understandably, some people forget about their own needs during this time, but your mental and physical wellbeing need looking after too.
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 free as a complete set, which includes a guide for parents, from our booklets page.
You can also download them here:
‘We were just so relieved that something could be done.’
Steph’s son Harry had a transplant in 2005
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 an extremely 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 for this.
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 ok and answer any queries you have.
‘We didn’t know what a transplant was. We didn’t know whether to be happy or sad, worried or excited.’
Lee’s daughter Rebecca had a transplant in 2011
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. However if you have any concerns, talk to someone at the school so that plans can be put in place.
Having a stem cell transplant and staying in hospital can be a very difficult and stressful situation for children of all ages. They will 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 on our website and our booklets have 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 to engage with them about it – 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 could be feeling left out if the family’s attention is focused on their sibling and their treatment.
Our illustrated storybook Lucy and the good soldiers helps to explains stem cell transplants to children. More advice on speaking to children about cancer is also available on the NHS and Macmillan website.
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.
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:
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 undergoing 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. It’s advisable to 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 Managing your finances page or visit the Citizen's Advice website.
Information published: 29/10/20
Next review due: 26/11/21