I often tell people to check my refrigerator if they want to track the development of hemophilia care in my family. For example, when my sons were small, the medicine they required, factor VIII, took up a full refrigerator, requiring us to buy a second one. As for other…
In the Twinkling of an Eye - a Column by Joe MacDonald
My older son, Julian, and I share many interests. We are both musicians and sing the same voice part, lyric tenor. Many people who hear us sing together tell me that it’s difficult to determine who’s singing. Our voices blend as if they’re one instrument. Genetics has a lot…
In April 2018, I began writing this column. Over the four years that I’ve shared stories from my heart, I cannot believe that my family has endured many bad moments associated with hemophilia. Yet I’ve also chronicled the joyous times we celebrated, even in the middle of overwhelming darkness.
My sons reacted to hemophilia treatment in entirely different ways. My oldest son, Julian, had one port-a-cath, while my youngest son, Caeleb, had eight. Julian had two surgeries, one to place the port and the other to remove it, while Caeleb required 16 surgeries for port placements and removals.
Next month, April 21–23, the MacDonald family heads to San Antonio to attend the Hemophilia Federation of America’s 2022 Symposium. I cannot wait to see old friends and participate in educational sessions regarding upcoming treatments and services to the bleeding disorders community. My wife, Cazandra, and I haven’t…
Last week, I took Caeleb, my youngest son, to the University of New Mexico Health’s urgent care center, which is on the same floor as the Ted R. Montoya Hemophilia Program and Treatment Center. He’d been experiencing stomach and head pain for five days. I figured he had a…
This week marks a change of seasons in the life of the church. With Ash Wednesday, Christians worldwide enter a time of Lent, a season of 40 days before Easter, to contemplate and discover the story of hope and how we find deliverance from the darkest parts of our…
I will never forget the years when my youngest son lived in the hospital more than he did at home. The stress that we felt as a family threatened to break us and wear us down. Date nights with my wife gave way to tending to emergency medical…
I knew that I wanted to teach theology at the university level. I prepared a great résumé and felt academically equipped, having received my doctorate in ministry. I applied to dozens of schools, but no one offered to hire me. I questioned my abilities and couldn’t understand why I…
Last Sunday, my oldest son came to town for a photoshoot. He hopes to build a strong website presence so that directors and casting agents consider him for future projects in musical theater. We made plans to eat lunch before meeting with the photographer. My youngest son joined me, and…
Recent Posts
- China’s first hemophilia B gene therapy now approved in Macao
- My husband still experiences seizures from a childhood brain bleed
- Little interest in gene therapy for many with severe hemophilia: German study
- With bleeding disorders, how do we know when pain isn’t ‘just pain’?
- 17-year-old advocate shares her NMOSD story to raise awareness