Managing your child’s care
As your child goes through tests and treatment, you may find yourself overwhelmed by everything there is to manage, such as medical information, appointments and medicines for your child. These tips may help to keep you organized:
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Keep a binder or notebook of all the medical records and information about your child’s cancer. Write down everything. It will become a source of information that you rely on to recall events and conversations. Some important things to keep track of include:
- names of the healthcare team and their contact information
- dates and details of conversations, appointments, tests and procedures
- treatment visits
- medicines and information about giving medicines
- any questions you have and their answers
- details about caring for your child at home
- details of your child’s symptoms or side effects and how they were treated
Keep a list of all important contacts on paper and in your cell phone. It may be helpful to keep a list of numbers in your cell phone and on paper at home so they are always easy to phone. Examples include phone numbers for the oncologist, pharmacy, treatment centre, lab and home care services.
Keep a chart of all medicines. A chart can be helpful if you have a number of medicines to keep track of and if there is more than one person looking after your child. The chart should include the name of the drug, how much (dose), times to give the drug and how to give the drug. Some treatment centres may give you a chart, calendar or booklet to use.
Keep a journal of your child’s treatment. A daily journal or calendar is a good place to record your child’s treatment. You can track treatments, side effects, medicines, tests, surgeries and appointments. It’s helpful to have a record of each chemotherapy or radiation treatment, including the names of all drugs, doses and how they were given.
Keep copies of your child’s treatment records. This is information that your child should have and keep for the rest of their life. Check with the healthcare team about what is important to have. This may include the following:
- pathology reports from biopsies and surgeries
- reports from surgery
- discharge summaries from hospitalizations
- list of chemotherapy drugs and doses
- dose and field of radiation
- type of stem cell transplant
- any problems or complications from treatment
Expert review and references
Children's & Women's Health Centre of British Columbia. British Columbia Children's Hospital Parent Handbook. Children's & Women's Health Centre of British Columbia; 2001.
Chemotherapy. Janes-Hodder, H. & Keene, N. Childhood Cancer - A Parent's Guide to Solid Tumor Cancers. 2nd ed. O'Reilly; 2002: 15: pp 223-256.
Wilson, K . Supportive Care. Kline, N. E. (Ed.). Essentials of Pediatric Oncology Nursing: A Core Curriculum. 2nd ed. Association of Pediatric Oncology Nurses; 2004: VI: 170-190.