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.

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.”

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.

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.

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.

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.

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.

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.

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).