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A blood cancer diagnosis can be overwhelming, but organizing your child’s medical records doesn’t have to be. There are many benefits to keeping a file with all of your child’s medical records in one place, especially if they see more than one doctor or you are seeking a second opinion. We’ve put together this guide to help you get started, along with some suggestions about what to include in your child’s file, and how best to access records from your healthcare providers.
Why should you organize your child’s medical records?
Maintaining an organized file or three-ring binder of your child’s personal medical records and lab reports allows you to:
- Play an active (and more informed) role in your child’s care
- Store all your child’s test results and medical information in one place
- Refer to reports when talking with your child’s healthcare team or caregivers
- Compile information from different doctors' offices
- Track trends or changes over time (for example, levels of B12, iron, or folate can play a role in anemia)
What to include in your child’s medical file
The best way to organize medical records is to include, in chronological order, your child’s:
- Medical history
- Initial diagnosis
- Pathology reports
- Blood, marrow, imaging, and other test results
- Treatment recommendations
- Health insurance claims
- Cancer treatment dates and locations
- Specific sites and amounts of radiation therapy, if applicable
- A list of drugs or supplements used to treat your child’s cancer, including the dates your child started and stopped taking them
- A list of other therapies your child has undergone, such as blood transfusions and dosages
- A list of any side effects your child experiences
- A list of other drugs or supplements your child takes for other health reasons
Simplify the management of your child’s medical file with our Health Manager app. Use your phone to manage your child’s daily health by tracking their side effects, medication, food and hydration, questions for their doctor, grocery lists, and more. You can also set up reminders for them to take medications and to eat/drink throughout the day.
Health app
Download the Blood Cancer United Health Manager App to track your health during treatment
Manage your health by tracking your side effects, medication, food and hydration, questions for your doctor, grocery lists, and more.Available in the Apple Store and Google Play.
Requesting copies of your child’s records
You're entitled to receive a copy of your child’s medical records and health history from a doctor or a hospital. (Originals must remain in the doctor's or hospital's file.) In order to receive a copy of your child’s medical history or test results, you must submit a written request to your healthcare providers. Doctors and hospitals may charge for copies of your child’s medical reports, tests, and X-rays or scan images.
Keeping track of your child’s tests
Follow these tips to help you keep track of your child’s tests:
- Ask your child’s doctor why certain tests are being done and what to expect
- Discuss test results with your child’s doctor
- Find out if and when follow-up tests are needed
- Mark upcoming appointments on your calendar
Alec and Aden
Blood cancer survivors
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