Childhood Cancer

Think of yourself as someone with two sets of books—the hospital’s and your own. If the hospital misplaces lab results, you will still have your copies. If your child’s chart becomes a foot thick, you will have a system that makes it easy to spot trends and retrieve dosage information. Even in this age of electronic medical records, doctor’s notes and lab results can be misfiled or lost at the hospital.

If you want to keep detailed records, you can record:

• Dates of hospitalizations

• Dates of all medical appointments and the names of the doctors seen

• Dates and results of all lab work

• Dates of treatments, including drugs given and dose

• Side effects from drugs

• Dates and types of any procedures done

• Your child’s sleeping patterns, appetite, and emotions

If your child has an emergency illness or injury, you may not be able to keep records as described. Try at least to record what procedures and surgeries occurred, and the names of the doctors involved. This allows you to check your bills for accuracy later.

Parents whose children have been hospitalized suggest many different ways to keep records, including:

Journal. Writing in an electronic or paper notebook works extremely well for people who like to write. Parents make entries every day about all pertinent medical information and often include personal information, such as their feelings or memorable things their child says. Journals are easy to carry back and forth to the hospital, and can be written in while waiting for appointments. One disadvantage is that they can be misplaced, but an advantage is that the journal can be handed off when a spouse or family member is coming to take over hospital duty.

I had a paper and pen sitting right there by Chase, and every now and again I picked it up and wrote something in my journal. Some days it was just my thoughts and feelings. Other days I wrote down details of Chase’s treatment. Some days I wrote down things like, “Chase is really cranky today,” or “He’s running a high temperature.” I actually had doctors write in my journal if I couldn’t spell something or I wanted them to explain the treatment. It really helped.

Hospital-supplied charts. Many hospitals give parents folders containing photocopied sheets for record-keeping.

Three-ring binder and hole punch. A three-ring binder is a handy way to keep copies of lab reports, consent forms, hospital admission forms, discharge orders, and other hospital paperwork all in one place.

Record-keeping—very important! My father came to the hospital soon after diagnosis and brought a three-ring binder and a three-hole punch. I would punch lab reports, protocols, consent forms, drug information sheets, etc., and keep them in my binder.

Computer or tablet (e.g., iPad® or Surface®). For many families, keeping all medical and financial records on a laptop or tablet is an attractive option.

Your records will help you remember questions, prevent mistakes, and notice trends.