Calendars and Notifications Keep Treatment on Track

I have carried a pocket calendar since my junior high school years. I recently came across an old calendar from 10th grade. Pictures of playful puppies were on the cover, and ticket stubs were tucked inside the sleeve. I was overwhelmed by memories of my younger days and the happiness of good times long ago.

My life has changed since then. While colored ink and stickers once adorned the pages of my calendars, now whistles and beeps notify me of upcoming events. I never realized what an essential role these reminders play in my life.

My 15-year-old son, Caeleb, asked me if this week was “Libra” week. (Libra is our nickname for Hemlibra.) I stopped for a moment to mentally count the weeks and events that have taken place since his last injection. I did not have a definitive response for Caeleb until I pulled out my calendar to confirm the date.

Many would not consider it odd to check the calendar for a treatment date. But in Caeleb’s case, it provokes utter amazement.

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For at least five years, my husband and I infused Caeleb daily. The treatments and products occasionally shifted due to a high titer inhibitor and an allergy to factor VIII. Constant use of his port led to a total of seven ports over his most difficult years with hemophilia. Caeleb also developed a needle phobia, and accessing his port was challenging. However, remembering to infuse was never a problem given our daily schedule.

During the difficult years, I kept records of his hospital stays and clinic visits. Lists of questions I prepared for the doctors fill numerous spiral notebooks. Keeping a detailed calendar was extremely helpful because I could quickly go to my notes to determine when a bleed did not respond well to treatment. I used to think I would remember the necessary details when speaking to doctors and nurses. Having notes and dates recorded helped me when the facts became overwhelming.

I depend on electronics for communicating and keeping track of calendars for my family. However, I always have a physical calendar on the pantry door. Having a calendar visible helps my family see the big picture, including each person’s comings and goings. It is a big help for Caeleb to see how his treatment fits into his world.

Caeleb currently treats his hemophilia with Hemlibra (emicizumab-kxwh). Instead of daily infusions, he administers a subcutaneous injection twice a month. Only two days require him to stop for a few moments to focus on hemophilia. Without hemophilia at the center of our lives, it is easy to forget about injections.

I give great thanks for the notifications on my phone that buzz, chime, and whistle, reminding me of Caeleb’s upcoming injections. After almost four years without needing to infuse, we are still amazed at how life has changed.

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