Your child might have a stem cell or bone marrow transplant as part of their treatment for acute lymphoblastic leukaemia (ALL).
A transplant allows your child to have high doses of chemotherapy and other treatments such as radiotherapy to the whole body. This intensive treatment has a good chance of destroying the leukaemia cells. But it also destroys your child’s healthy stem cells in their bone marrow too.
What are stem cells?
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. These are most commonly from:
- a family member, most often a brother or sister
- someone you and your family don’t know – a donor from the transplant register
A transplant from any donor is called an allogeneic transplant.
What happens when your child has donor stem cells
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 or bone marrow 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. 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 or bone marrow transplant can be severe. They include:
- an increased risk of infection
- increased risk of bruising or bleeding
- feeling or being sick
- a sore mouth
- problems with feeding or eating and drinking
- being very tired
- hair loss
- stress or anxiety
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 or 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.
Tips and support
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 straightaway.
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 or bone marrow 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 healthcare assistant or student nurse on the ward to sit with or play with your child, while you take this time for yourself.
Organisations that can help
Children’s cancer and leukaemia group (CCLG)
CCLG provide information about childhood bone marrow or stem cell transplants.
CLIC Sargent can offer help and support for parents who have a child recently diagnosed, or living with childhood cancer. They can also help you access financial support.
Anthony Nolan provides information for parents of children having a stem cell or bone marrow transplant. There is a video on their website which has tips from parents who have been through the transplant journey with their child.
Talking to your child
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.
Telling other people
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, taking pictures and writing or making 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.