Coping with childhood acute lymphoblastic leukaemia (ALL)
It is extremely distressing to find out that your child has leukaemia. It can raise many different emotions. It is very normal to feel angry, sad, upset and shocked. It is such a lot to take in. You are likely to worry about whether they will get the right treatment, what will happen, and how you will all cope.
If you have other children most parents and grandparents worry about them as well. Practical help and support is something people nearly always need. This might be help with shopping or with looking after other children in the family.
It is essential that parents and other close family also have support. It doesn’t show weakness to ask for help. Talking to friends and other members of the family can help you deal with your feelings.
Specialist nurses and social workers at the hospital can offer support too. Some centres can also offer more formal psychosocial help and complementary therapies to parents. Ask your child’s clinical nurse specialist if they can let you know what’s available.
Organisations that can help
Cancer Research UK
Cancer Research UK has an online forum called CancerChat. Here you’re able to chat to other people, including parents, who are affected by cancer.
For support and information, you can call the Cancer Research UK information nurses on freephone 0808 800 4040, from 9am to 5pm, Monday to Friday. They are happy to help. They can give advice about who can help you and what kind of support is available.
Blood Cancer UK
Blood Cancer UK sponsors research into blood cancers such as leukaemia, lymphoma and myeloma. They also provide patient information booklets and leaflets that you can download or order from their website. They have information on different types of children’s blood cancers. There is also an online community you may like to join.
The Children’s Cancer and Leukaemia Group (CCLG)
The Children's Cancer and Leukaemia Group (CCLG) produces booklets for parents and brothers and sisters of children with cancer that you may find helpful. You can download these from their website.
Young Lives vs Cancer
Young Lives vs Cancer (previously called 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.
Maggie’s
Maggie’s is a national charity with centres across the UK. They offer care and support to people affected by cancer. Each centre is beside an NHS cancer hospital and is run by specialist staff. If you’re not near a centre, you can access support and information on their website.
Future Fertility Programme Oxford
The Future Fertility Programme is run by a team of doctors, researchers and tissue bank specialists. They are part of Oxford University Hospitals (OUH).
They aim to help children and young people at risk of infertility due to illness or treatment.
Other sources of help
Some organisations can put you in touch with a cancer support group. We have information about books, leaflets and other resources about cancer treatment.