As a caregiver, hope exists in practically my every waking thought. I wish for things to improve regarding my loved ones’ treatment. Hope keeps me going so that I may provide the best care possible for them. Four simple letters put together in the proper order set my heart and…
In the Twinkling of an Eye - a Column by Joe MacDonald
This time of year reminds me of hope and the promise of new beginnings. In the spring of 2014, when my son “MacDonald the Younger” was 8, his life drastically changed. Along with our talented hematologist, Dr. Winter, we mapped a treatment plan that proved successful for my young, stinky…
I cannot believe that Easter is a few days away. I keep asking myself, “Didn’t we celebrate New Year’s Day yesterday?” One of the common themes interwoven into the fabric of what Christians call Holy Week is the idea that before we get to the joy of Easter, we…
Although my sons, now 15 and 24, are different as night and day, they both began asking questions about hemophilia at about age 5. I tackled the tough issues they wrestled with, always acknowledging that their problems contained merit. At 5 years old, they each asked the same question that…
I faced my old friend, the medical supplies boxes, still not believing the task ahead of me. I almost spoke to the six boxes stacked on top of one another. “I am sorry,” I wanted to say, “but we do not need you any longer. We must move on.” Each…
On Sunday mornings in my home, I usually watch “CBS Sunday Morning,” hosted by Jane Pauley. Last week, an interview caught my eye. The segment featured Dr. Jennifer Doudna, who won the Nobel Prize in chemistry in 2020 along with fellow researcher Emmanuelle Charpentier for developing…
Back in Texas in good ol’ 1996, when my first son came into the world, a nice, well put-together doctor entered our room. He introduced himself as Dr. Connelly, the pediatrician on call. He appeared very polite and had an effortless bedside manner. He let us know that our…
At every annual event sponsored by the National Hemophilia Foundation, a particular room is dedicated to remembering those who died from complications of hemophilia. In the 1980s and early ’90s, many people lost loved ones during a period that became known as the “hemophilia holocaust.” A staggering number…
When my first son was 6 months old, we experienced our initial reception into the world of hemophilia. Until that point, his bleeding disorder had not reared its ugly head. This was his first internal bleed into a joint (his ankle), and we prepared to find a vein to…
In past columns, I wrote about moments of absolute hopelessness — no more prevalent than the times when hemophilia reared its ugly head in my sons’ lives. There were many instances when powerlessness dominated my thinking as one of my sons screamed out in pain because he felt…
Recent Posts
- There’s no dress rehearsal for raising children with hemophilia
- Approved treatment controls bleeding for up to 5 years in hemophilia A
- A webinar for women that answers the all-too-familiar question, ‘Now what?’
- Simple clotting tests may help speed diagnosis of acquired hemophilia A
- Passing the torch to the next generation of bleeding disorders advocates
