Columns

Finding Answers Together

Both of my sons have expressed frustration at having a bleeding disorder. After experiencing a problematic infusion, each has cried out, “I hate having hemophilia!” While they are almost 10 years apart, the same response lets me know that they are “getting it.” Sticking a needle in a child’s arm…

Why Do We Walk? Because We Can!

I recently spoke to members of the Sangre de Oro Chapter of the National Hemophilia Foundation, based in Albuquerque, New Mexico. They are my family. We gathered to “kick off” the upcoming Unite for Bleeding Disorders walk. We had a friendly competition to see whose team…

Finding Our Way, with Community

I held my son, my firstborn, in my arms. From outward appearances, no one could guess that he had a bleeding disorder. Some moments, I forgot about his diagnosis. Life seemed to be moving at a healthy pace, and my wife and I invited the newest member of the…

A Month’s Supply and Feeling Lost

I couldn’t believe Caeleb was about to get his first dose of Hemlibra (emicizumab-kxwh). I have been following several people whose children participated in the Hemlibra study (NCT02622321) before the Food and Drug Administration approved the therapy, and I saw how it changed their lives. After…

My First Moments

There are moments that forever alter lives. Sometimes we celebrate educational goals, while others encounter the excitement of new love. Other times leave us breathless as we attempt to rise again from a catastrophic event, unsure whether we will ever recover. Whatever we experience, our worlds change and none of…

The Last Bucket

  I have a few rituals on Sunday evenings. I check to make sure clothes are washed and ready for the week, I set the menu so that we have a plan for dinner throughout the week, and I fill the infusing bucket and bring it to the…