Childhood Cancer

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Childhood Brain and Spinal Cord Tumors

Keeping medical records

Think of yourself as someone with two sets of books, the hospital’s and yours. If the hospital loses your child’s chart or misplaces lab results, you will still have a copy. If your child’s chart becomes a foot thick, you will still have your simple system that makes it easy to spot trends and retrieve dosage information. The following are suggested items that you should record:

  • Dates and results of all lab work
  • Dates of all scans and type of scan (e.g., CT, MRI)
  • 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 (both surgical and non-surgical)
  • Dates of radiation therapy, including total dose delivered and areas treated
  • Dates of diagnosis, completion of therapy, and recurrences (if any)
  • Your child’s sleeping patterns, appetite, and emotions

Keeping daily records of your child’s health for months or years is hard work. But remember that your child will be seen by pediatricians, oncologists, neurosurgeons, neurologists, residents, radiation therapists, lab technicians, nutritionists, psychologists, social workers, and physical, occupational, and speech therapists. Your records will help keep it all straight and help pull all the information together. Your records will help you remember questions to ask, prevent mistakes, and notice trends. In short, your records will help the entire team provide your child with the best possible care.

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

Journal

Keeping a 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 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. Journals have the advantage of unlimited space; but one disadvantage is that they 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.

In You Don’t Have To Die, Geralyn Gaes writes of the value of keeping a journal:

Some days my entries consisted of only a few words: “Good day. No problems.” Other times I had so many notes and questions to jot down that my handwriting spilled over into the next day’s space. I must confess that I probably went overboard, documenting every minute detail of Jason’s life down to what he ate for each meal. If he gets over this disease, I thought, maybe this information will be useful for cancer research.

I’m not so sure I was wrong. Jason went 2 years without a blood transfusion, unusual for a child receiving such aggressive chemotherapy. Studying my journal, one of his physicians remarked, “This kid eats more oatmeal than anybody I’ve ever seen.” Which was true. Jason wolfed it down for breakfast, after school, and before bedtime. The doctor speculated, “Maybe that’s why Jason’s blood is so rich in iron and builds back up so fast.”

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 counts.

Calendar

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.

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 the telephone. 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.

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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Blood count charts

For a long time I was unorganized, which is very unlike the way I usually am. I found that my usual excellent memory just wasn’t working well. It all seemed to run together, and I began to forget if I had given her all of her pills. Then I began using a calendar for both counts and medications. I wrote every med on the correct days, then checked them off as I gave them.

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.

Tape or digital recorder

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 3 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.

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 machines are very inexpensive and can be carried in a pocket or purse. Digital devices 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 word into a written document.

Computer

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 by profession 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.

For the computer literate, saving all medical records on the computer hard drive 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 or external hard drive.

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 can discard the associated single printouts (much less paper that way).

Chapter 21: Medical and Financial Record-keepingKeeping financial records

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