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:

Keeping track of medical information

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.

Your child's healthcare team

Each member of your child's healthcare team has expertise in a specific area. Along with treating your child, they will also provide information, help to explain things and answer any questions that you or your child may have.

Working with the healthcare team

It is very important that parents and the doctor and other members of the healthcare team establish and maintain a relationship based on trust and communication.

Treatment planning

There are several treatment methods for childhood cancer. Each type of cancer may be treated differently depending on the most effective treatment for that type of cancer.

Palliative care

Pediatric palliative care takes care of the physical, emotional, spiritual and social needs of children and their families who are living with a serious or life-threatening illness such as cancer.

Giving medicines at home

When you have to give your child medicine at home, be sure to ask the pharmacist or another healthcare team member to tell you all about the medicine.

When to call the doctor

Parents should call the doctor whenever they are worried or the child seems sick.

Coping with tests and treatment

Diagnosing and treating cancer usually involves different medical procedures and tests. Children react to tests and treatment in different ways depending on their age, developmental stage and personality.

Pain in children

Some types of childhood cancer or their treatments may cause pain, but having cancer doesn’t necessarily mean having pain. Pain can keep some children with cancer from doing the things they enjoy and being active. It can cause problems with sleeping and eating and interfere with healing.

Medical disclaimer

The information that the Canadian Cancer Society provides does not replace your relationship with your doctor. The information is for your general use, so be sure to talk to a qualified healthcare professional before making medical decisions or if you have questions about your health.

We do our best to make sure that the information we provide is accurate and reliable but cannot guarantee that it is error-free or complete.

The Canadian Cancer Society is not responsible for the quality of the information or services provided by other organizations and mentioned on, nor do we endorse any service, product, treatment or therapy.

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