Tracking factor VIII (FVIII) infusions can be a drag! When I started infusing it regularly to prevent bleeds caused by my hemophilia, I searched for an app to help. For hemophilia patients, it’s important for our medical providers to have a record of our bleeds and the treatment…
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“Fine.” People have asked hundreds of times how my family and I were doing — particularly my youngest son, Caeleb, given his hemophilia — and I’ve replied with that single word. Caeleb is now 15, and his hemophilia is under control. But several of his younger years were spent…
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The Hemo Mama Bear Olympics
There are some moments in my life while raising two sons with severe hemophilia that I have thought, “Wow! You, Cazandra, have just won the gold medal in the Hemo Mama Bear Olympics!” And there are other times I failed so miserably that I would not have even…
Last Friday, my youngest son, Caeleb, and I started our day as usual and ate at one of our favorite restaurants, Barelas Coffee House in Albuquerque, New Mexico. Summer carries a special magic in the MacDonald home. For many years, I’ve enjoyed spending Museum Fridays with my sons,…
One night when my oldest son, Julian, was 6, we sat down at the kitchen table, preparing to infuse factor VIII, a clotting agent, to treat his hemophilia. He held out his arm, and I looked at the vein we called “Old Faithful.” Located on the top of…
To help advance new treatments for hemophilia and other blood disorders, Pathway to Cures (P2C) has invested $250,000 in Anvesana, a company working to develop therapies based on RNA biology. “Anvesana is delighted to be working with Pathway to Cures to develop therapeutics that will bring life altering…
I am originally from Texas, so I know the meaning of the word “team.” The Lone Star State reveres sports organizations like no other place in the country. Friday nights in the fall are overwhelmed with football, marching bands, and great times to visit with friends. Everyone gathers together with…
One recent evening, my wife and I watched our favorite television shows. After the last one ended, the local news came on to give us the latest updates on the day’s top stories. One segment touched me deeply, and I couldn’t help but think back on the many health difficulties…
Raising awareness is a delicate task. Sometimes, the most effective way to promote dialogue is with a tool that is considered controversial. I understood this seven months ago when I made a T-shirt that was bound to attract both people who loved it and people who hated it.
It started with a refrigerator leaking water out of the bottom and a YouTube video that made it seem like an easy fix. You know the kind: “Just remove the freezer door.” “Melt the ice with a hair dryer.” “You’ve got this.” It didn’t seem like a big deal, but…