I like to watch jugglers. From balls and plates, to bowling pins and swords, performers toss items into the air one after another, never letting them hit the floor. Their hand-eye coordination is tremendous, as well as their ability to move, twirl, and even ride a unicycle while keeping the…

Caregiving is hard work. When your child is chronically ill, caregiving goes beyond the expected parental duties. You have overwhelming responsibilities. There are doctor’s appointments, infusions, and treatments at home. There are hospital stays, lab work, and missed school days. Keeping up with your child’s medical condition can…

As a proud dad, I must brag about the incredible voice of my oldest son, Julian. He soars to high notes effortlessly with a rich and full sound. I feel transported when he sings because of his passion for and delivery of each note. My son leaves nothing to chance…

Factor and supplies used to take over my kitchen. Boxes of syringes, Betadine swabs, dressing kits, monthly Sharps containers, and box upon box of factor arrived and needed to be organized and put away. The number of items was overwhelming. Sometimes the boxes would stay unopened for a…

Children and teenagers with hemophilia are considerably more physically active than adult patients, possibly reflecting more recent emphasis on the benefits of exercise and the arrival of better treatments, according to a recent review study. Yet, how physically activity relates to bleeding events remains unclear, its researchers wrote, and long-term…

A week ago, my oldest son, Julian, left home to begin rehearsals for a musical that could open doors to a long-term career. The show is a parody of the slasher movie “Saw.” Its producers hope to have him rehearse for a few weeks in San Antonio before sending him…

Switching from on-demand treatment to regular preventive therapy with extended half-life products may mean fewer bleeds, healthier joints, and better quality of life for people with hemophilia. That’s according to a new analysis of Phase 3 study data from trials involving more than 100 hemophilia patients that spanned a…

My fear of letting go of the past stems in part from my anxiety about change. I want my sons, who both have hemophilia, to take control of their lives and be responsible as they move through the world. They leave, but what about me? I’m not going…

Over the next few weeks, I’m taking a short sabbatical. I realized I needed time to regroup, rest, and renew my spirit. Little triggers that crept into my brain warned me I needed to care for myself. Failure to adhere to these warning signs often leaves me angry,…