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 that their child has said. Journals are easy to carry back and forth to the clinic, and journal entries can be written while waiting for appointments. They have the advantage of having unlimited space. One disadvantage is that they can be misplaced.

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 two 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."

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 your child's cancer and treatment plan. Often, these notebooks have blank pages for recording blood counts.

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.

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