Key things you should know for a child with leukaemia

You play an important role in supporting children with leukaemia at home. The family will have all the contact details for their cancer care team, who may well have contacted you directly to provide an aspect of care in the home.  

Here are some core elements of advice.  

  • Children have direct access back to their Principal Treatment Centre (PTC) or Paediatric Oncology Shared Care Unit (POSCU) 24 hours a day and seven days a week if they become unwell. 
  • Children with cancer are at risk of life-threatening infection (sepsis) during treatment. Parents or carers are must phone their treatment centre immediately if their child has a temperature above 38oC, or if they are unwell in any way. 
    There are also other side effects that need a rapid response. 
    The Triage Tool Kit for Children's Cancer Services is a national validated assessment tool that can help you assess symptoms and advise when onward referral is needed. 
  • Viral infections can be fatal in immunocompromised children. Please refer to page 5 of the GP Factsheet: Care and Treatment for guidance on viral infections.  
  • Children and young people receiving long term therapy may be at risk of an unusual type of pneumonia called pneumocystis (Carinii) jiroveci pneumonia (PJP). This infection is due to an organism which may be present in most people’s lungs. In patients who are on immunosuppressive drugs long term, the infection may be activated. This infection is characterised by fever, tachypnoea (fast breathing) and a dry cough. Some chemotherapy regimens may increase the risk of developing PJP. Children with leukaemia will be on a low dose cotrimoxazole (an antibiotic) two or three days a week, throughout their treatment, to help prevent it occurring. 
  • Decisions around vaccination during treatment and revaccination following completion of treatment, will be made by the child’s consultant based on the treatment the child has received and the relevant CCLG guideline. Please refer to Page 6 of the GP Factsheet: Care and Treatment for guidance on vaccinations. 
  • Children with leukaemia on treatment must not receive any non-steroidal anti-inflammatory drugs (NSAIDs), e.g. ibuprofen, diclofenac, unless discussed with their haematology medical team. 
  • Children with a central venous access device in situ should not be given paracetamol as this may mask a temperature. Oral morphine should be used as first line analgesia
  • They must not receive any rectal medication or have a rectal examination. 
  • All children and young people with leukaemia up to the age of 25 are invited to join current relevant the national leukaemia clinical trial.  
    There are a range of clinical trials relevant to Acute Lymphoblastic Leukaemia (ALL) including children with Down Syndrome, infant ALL, Acute Myeloid Leukaemia, Relapse, etc. 
    Participation is completely voluntary and will be discussed in detail by the medical and nursing team. Families who opt not to enter the trial will be offered ‘National Standard of Care’ treatment based on the findings from the previous clinical trial.
  • Families will have a treatment schedule and or flowsheets to show where they are in treatment.
  • Treatment may be multi-modal depending on the diagnosis and treatment plan. It could include any or all the following;
    • Surgery (for central line insertions), plus minor theatre procedures for intrathecal treatment.
    • Chemotherapy and / or immunotherapy (also known as Systemic Ant-Cancer Therapies – SACT)
    • Radiotherapy – which could be photon (locally) or proton (at one of the two national centres in London or Manchester)
    • Haematopoietic Stem Cell Transplant
  • Treatment may be stratified into risk groups according to criteria in the trial, such as age, white cell count at diagnosis, genetics, and response to treatment.
  • ALL treatment lasts around two years for girls and three years for boys. Whereas AML treatment is shorter.
  • All patients should have access to a named clinical nurse specialist or key worker who is contactable via their PTC or POSCU – please contact them with any queries you may have.
  • The treatment for common ALL, after the initial phase of treatment, is given on an outpatient basis. 
  • We anticipate and hope that children and young people will be well enough to attend school or nursery and participate in most normal activities throughout the majority of their treatment.

Page last updated: March 2026