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.
The Children and Young People's Cancer Association (CCLG)
The Children and Young People's Cancer Association (CCLG) (previously called the Children's Cancer and Leukaemia Group) work to coordinate national and international clinical trials. They also provide information about cancer for children, young people and their families.
Phone: 0333 050 7654
Email: info@cclg.org.uk
Blood Cancer UK
Blood Cancer UK funds research into leukaemia, lymphoma and myeloma. It also provides patient information booklets and leaflets that you can download or order from their website.
Support line: 0808 2080 888
Email address: support@bloodcancer.org.uk
Young Lives vs Cancer
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
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.
You can join a support group, take part in weekly sessions like relaxation and stress management, or learn about nutrition and health. You can also visit just to have a cup of tea and a friendly chat.
Phone: 0300 123 1801
Email: enquiries@maggies.org
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.
