My youngest son, Caeleb, became best friends with a girl named Taylor in sixth grade. Then, our family moved away to Texas, but returned to New Mexico two years later. Caeleb and Taylor now live an hour apart. Despite it all, they have remained close. It is remarkable for a…
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My mother passed away a month ago. I thought I’d be ready after six years of dealing with her condition. I was wrong. In 2012, doctors diagnosed her with diffuse large B-cell lymphoma (a blood cancer). She went into remission, but four years later, the cancer returned, this time…
Last month, I had the pleasure of meeting another “HemoWife” at an event organized by the hemophilia organization that my husband, Jared, is involved with. Her name is Anne, and she’s married to Jundee, who has severe hemophilia A. She and I had a quick chat, during…
I attended the Hope for Hemophilia conference last weekend and met some wonderful people. I delivered a keynote address and shared my story of raising sons with hemophilia and holding on to hope. It was a special experience and I am grateful for the opportunity. The day after…
Most people with moderate or mild hemophilia A who received preventive treatment with Hemlibra (emicizumab) in the HAVEN 6 clinical trial had no bleeds requiring treatment over a median follow-up of over a year, new data show. The findings were presented at the 30th International Society on Thrombosis and…
My youngest son, Caeleb, and I recently saw an outstanding production of the musical “Hamilton.” As we watched the performers onstage, I glanced at my son and saw his face glued to the action. He appeared entranced by the dancers and singers moving across the stage with catlike precision.
February 2014 proved to host the last bleed “MacDonald the Younger” faced thus far. The treatment plan created by our Hemophilia Treatment Center worked like a charm, and in the twinkling of an eye, the storm subsided and our quality of life improved drastically. What we didn’t…
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When I Have Nothing Left to Give
I’ve spent several nights in the hospital with my son, and I play tag with my wife. It is her turn to trade duties with me. I leave the medical center and head straight to the church, lead worship, eat a meal, and return to the hospital to…
In recent years, I’ve found myself simplifying my diagnosis in medical settings by saying I have a bleeding disorder. It’s the simplest way to explain what is actually a combination of hemophilia B and von Willebrand disease. It’s broad enough to be understood, and…
In a reversal of a previous recommendation, the U.K.’s National Institute for Health and Care Excellence (NICE) has recommended that the National Health Service (NHS), England’s publicly funded health insurance program, should offer reimbursement for Hemgenix (etranacogene dezaparvovec) to eligible adults with hemophilia B. Reimbursement would come through…