Some parents consider that they have two sets of books, the hospital’s and their own. If the hospital loses their child’s chart or misplaces lab results, the parents will still have a copy. If their child’s records include hundreds of pages in an electronic chart, the parents can have a simple system that makes it easy to spot trends and retrieve dosage information. The following are suggested items that parents can record:

• Dates and results of all lab work
• Dates of chemotherapy, drugs given, and doses
• All changes in dosages of medicine
• Any side effects from drugs
• Any fevers or illnesses
• Dates of all scheduled and unscheduled hospitalizations
• Dates of all medical appointments and name(s) of the doctor(s) seen
• Dates for any procedures performed
• Dates of radiation therapy, including total dose delivered, and areas treated
• Dates of diagnosis, completion of therapy, and recurrences (if any)

Keeping daily records of your child’s health for months or years is hard work. But remember that your child may be seen by pediatricians, oncologists, residents, radiation therapists, lab technicians, nutritionists, psychologists, social workers, and physical therapists. Your records can help keep it all straight and help pull all the information together. Your records also will help you remember questions to ask, prevent mistakes, and notice trends.

The following sections describe several record-keeping methods parents have used successfully.

Journal

Keeping a journal in a notebook works very well for some families. Parents make entries every day about all pertinent medical information and often include personal information, such as their own feelings or memorable things their child said or did. Journals are easy to carry back and forth to the clinic, and journal entries can be written while waiting for appointments. One disadvantage is that journals can be misplaced.

Stephan’s oncologist is kind of hard to communicate with. I learned early on to keep a journal of Stephan’s appointments, drugs given, side effects, and blood counts. That way if I ever had to call the doctor I would have it right in front of me. I also recorded Stephan’s temperature when his counts were low to keep track of infections.

Many institutions give families a notebook that contains information about their child’s cancer and treatment plan. Often, these notebooks have blank pages for recording blood cell counts. Free treatment journals are available from the Alex’s Lemonade Stand Foundation at www.alexslemonade.org/childhood-cancer-treatment-journal.

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. A mother at the clinic showed me her weekly calendar book, and I adopted her idea for recording blood counts and medications. Frequently the clinic’s records disagreed with mine as to medications and where we were on the protocol. I was very glad that I kept good records.

Calendar

Many parents report great success with the calendar system. They buy a new calendar each year and hang it in a convenient place, such as next to where you store the pills. You can record counts on the calendar while talking on the phone to the nurse or lab technician and take the calendar with you to all appointments. Other family members use an online calendar which they can view on any of their electronic devices.

Each year I purchase a new calendar with large spaces on it. I write all lab results, any symptoms or side effects, colds, fevers, and anything else that happens. I bring it with me to the clinic each visit, as it helps immensely when trying to relate some events or watch trends. I also use it like a mini-journal, recording our activities and quotes from Meagan. Now that she’s off treatment, I’m superstitious enough to still bring it to our monthly checkups.

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I wrote the counts on a calendar or on little pieces of paper that got lost. But, to be honest, I didn’t keep the medical records very well. I’m upset with myself when I think of it now.

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The first place where my son was treated gave us a really helpful calendar that listed the drugs and doses for each day. I could just check things off when I gave them. When he relapsed the second time, we went to a different institution, enrolled in a clinical trial, and I got the full trial document. Then I could just look up what was supposed to happen and when.

Blood cell count charts

Many hospitals supply folders containing photocopied sheets for record-keeping. Typically, they have spaces for the date, white blood cell count, absolute neutrophil count, hematocrit, platelet level, chemotherapy given, and side effects.

My record-keeping system was given to me by the hospital on the first day. We were given a notebook with information about the illness and treatment. Also included were charts that we could use to keep all the information about my child’s blood work, progress, reactions to drugs, etc. While we were at the hospital, we were able to get the information off one of the computers on our floor each afternoon. My notebook holds records and notes for three years. Perhaps I was being compulsive with my record-keeping, but it made me feel that I was part of the team working on bringing my boy back to health.

Tape or digital recorder

For parents who keep track of more information than a calendar can hold, and who find writing in a journal too time consuming, using a voice recording device works well. Small recording machines are inexpensive and can be carried in a pocket or purse. Most smartphones also can record. Digital recordings can be downloaded to a flash drive or computer for storage. If you want to transcribe the recordings to a written record, there are programs such as Dragon Speak® that you can train to understand your voice, and that can be used to change your spoken words into a written document.

I started keeping a journal in the hospital, but I was just too upset and exhausted to write in it faithfully. A good friend who was a writer told me to use a tape recorder. It was a great idea and saved a lot of time. I could say everything that had happened in just a few minutes every day. I kept a separate notebook just for blood counts so I could check them at a glance.

Computer

For some parents, saving all medical records on a computer is a good option. Parents can print out bar graphs of the blood counts in relation to chemotherapy and quickly spot trends. You can also keep a running narrative of your thoughts, feelings, and concerns during your child’s treatment. As with all other computer records, keep a backup copy on a flash drive, external hard drive, or mobile cloud storage.

At our hospital, the summary of counts for a given child can be formatted to print out as a “trend review,” with each date printed out on the left side of the page and the various lab values in columns down the page. The system permits printouts from the very first blood draw if that is desired. Periodically, on slow days, I’ll ask if I can have a trend review. Then I put it in my binder of records.