Treatment
Your child first has chemotherapy and other treatments such as radiotherapy. This prepares their body for the healthy stem cells. Your child then has the stem cells back (transplant). These stem cells make their way to the bone marrow. Here they make the blood cells they need to recover.
Your child’s doctor might suggest a transplant if their ALL:
has features that show it is likely to come back (high risk)
has come back (relapsed ALL)
is resistant to treatment (refractory ALL)
Stem cells are very early cells made in the bone marrow. Bone marrow is a spongy material that fills the bones.
These stem cells develop into red blood cells, white blood cells and platelets.
Red blood cells contain haemoglobin which carries oxygen around the body. White blood cells are part of the immune system and help to fight infection. Platelets help to clot the blood to prevent bleeding.
Your child has a drip of new stem cells into their bloodstream after their high dose chemotherapy treatment and radiotherapy to the whole body. This type of radiotherapy is known as total body irradiation (TBI).
Your child usually has stem cells from someone else (a donor). This is known as an allogeneic transplant or allograft.
These stem cells are most commonly from:
a family member, most often a brother or sister (sibling match)
someone you and your family don’t know – a donor from the transplant register (matched unrelated donor or MUD)
We have more information about stem cell transplants. This information is written for adults with cancer, but some of the information and pictures might be helpful.
Find out who can donate stem cells or bone marrow
Your child stays in hospital for around 6 to 8 weeks while they have their transplant. This is just a guide, some children go home sooner, others take a longer time to recover. It’s impossible to predict how long it will take before they have their transplant.
To limit the risk of infection your child will be in a single room with their own bathroom throughout their transplant. Doctors might call this isolation.
You can stay with your child. Different hospitals have their own rules about who can stay or visit and when. Generally, visits from people outside the immediate family need to be kept to a minimum, to prevent anyone accidentally passing on an infection. Your team will let you and your child know exactly what you can and can’t do, and why.
Children’s stem cell transplant units are very specialised centres. The staff are experienced and skilled in looking after children having high dose treatment and being nursed on their own.
Your child will have lots of contact with the play specialists and hospital school. You can get support from your social worker, your nurse specialist or support groups for other parents and carers of children having this type of treatment.
The side effects of having a transplant are from the high dose treatment. They depend on the drugs and any other treatment your child is having such as TBI. Your child’s consultant will explain the treatment and possible side effects. Take time to think about it all and ask as many questions as you need to.
Common side effects of a stem cell transplant can be severe. They include:
an increased risk of infection
increased risk of bruising or bleeding
feeling or being sick
diarrhoea
a sore mouth
difficulty with feeding, eating and drinking
being very tired
hair loss
stress or anxiety
GvHD is a possible complication after a transplant from another person. It happens when white blood cells in the donated bone marrow or stem cells attack your child's own body cells. GvHD mainly affects the skin, gut and liver but can affect almost any part of the body. The symptoms your child has will depend on which part of the body is affected.
We have more information about GvHD. This information is written for adults with cancer, but some of the information might be helpful.
Graft versus host disease (GvHD)
Your child will have medications, and other supportive types of care, to try and prevent or minimise these side effects. The team will support you and your child while they are having treatment.
Having a stem cell transplant for relapsed or refractory ALL can cause long term side effects. Before your child starts treatment, the doctor will explain the benefits and possible problems of treatment including the long term side effects.
Ask questions about anything you don’t understand or are unsure about.
We have information on follow up and late effects of childhood ALL
It can help to understand what is going to happen when your child has a transplant. Ask if you are able to look around the unit and at a transplant isolation room before your child has treatment.
Ask as many questions as you need to. Intensive treatment for ALL is complicated. No one expects you to understand the science or the treatment plan straight away.
You could write questions down as they come up and take them to the clinic appointment with you. You might not want lots of information before the transplant starts and that’s fine too. Take things at your own pace.
There is lots of help and support for you and your family. Being with your child while they are having treatment in hospital for an extended amount of time can be very hard both emotionally and physically for all the family. It’s normal to be anxious and worry about what is happening or might happen in the future. Emotional and psychological support is available in most children’s stem cell transplant units. This support is for children, sibling donors and parents.
Try and have time out for yourself. This can feel difficult for many reasons, including not wanting to leave your child alone in hospital. It’s important that you have some rest too and you look after yourself. You might want to start by taking a 20 minute trip to the hospital canteen for a cup of tea. You could ask a play specialist, healthcare assistant or student nurse on the ward to sit with or play with your child, while you take this time for yourself.
The Children and Young People's Cancer Association (CCLG) work to coordinate national and international clinical trials. They were previously called the Children's Cancer and Leukaemia Group. They also provide information about cancer for children, young people and their families.
Phone: 0333 050 7654 Email: info@cclg.org.uk
The Children and Young People's Cancer Association website
Young Lives vs Cancer is a charity that provides clinical, practical, financial and emotional support for children and young people and their families who are affected by cancer. You can chat to the social care team through their live chat Monday to Friday 10am to 4pm. Or you can email or phone them.
Phone: 0300 330 0803 Monday to Friday 9am to 5pm
Email: getsupport@younglivesvscancer.org.uk
Find out about Young Lives vs Cancer on their website
Anthony Nolan runs one of the largest bone marrow donor databases in the world. It has regional centres which are listed on its website. It also provides information about being a stem cell or bone marrow donor.
It is looking for people in good health aged 16–30 to join the stem cell register. In particular, they need more people from minority ethnic communities to sign up.
General enquiries: 0303 303 0303, open Monday to Friday 9am to 5pm
Email: patientinfo@anthonynolan.org
Learn more at the Anthony Nolan website
Many people are unsure about how to explain to their child about their transplant if they are old enough to understand. You could start by asking them what they think is happening. They might have had lots of treatment for leukaemia already and have picked up more than you realise.
An honest idea of what is happening and what might happen can make it feel less frightening to them.
The Children’s Cancer and Leukaemia Group (CCLG) have produced two books that can help:
Ben’s Stem Cell Transplant - a colourful illustrated story book for young children preparing for a stem cell transplant
Jess’s Bone Marrow Donation - follows the story of Jess, who is donating her bone marrow to help her brother, Ben
These books may also be helpful to explain transplant treatment to your other children.
Find out more and order the books here
How much you tell other family members or friends about your child’s treatment is up to you. The hospital staff are not able to share any medical information with other family and friends without your permission.
Updating lots of different people can be tiring. You might feel frustrated or upset going over the same information. Or you might worry about upsetting those you are telling. It can help to give the information out once to one person. They can then tell the others for you.
Other families have found updating a blog or a private group on social media helpful. This way you can give the update when is best for you. You also only have to do it once. You can get your child involved in this. They can take pictures, write or make videos about their own experiences if it’s appropriate.
Some families find it hard to talk to one another about cancer. They may be frightened about the emotions this could bring up. Or your friends and relatives may not want to talk to you about your child’s cancer because they worry that you won't be able to cope with talking about your situation. They may not want to upset you. This can make you worry even more, as well as strain your relationships. But it is important to know that even if your family aren't talking about your child’s illness, they are probably constantly thinking about it and wanting to find ways to help.
Last reviewed: 06 Jan 2025
Next review due: 06 Jan 2028
It can be more difficult to treat relapsed or refractory acute lymphoblastic leukaemia (ALL). But there are treatments available.
It is extremely distressing to find out that your child has leukaemia. Find out about what you can do to help you and your family cope when your child is diagnosed with acute lymphoblastic leukaemia (ALL).
Researchers are looking into new treatments for acute lymphoblastic leukaemia as well as ways to reduce the side effects treatment can cause in children and young people. Find out what research is going on.
Find out about childhood acute lymphoblastic leukaemia, how it is diagnosed and treated, and resources and organisations that can help you cope.
Find out about what to expect when your child is first diagnosed.
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Search our clinical trials database for all cancer trials and studies recruiting in the UK.
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