Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald

question, second opinion, bullies, pain, emergency fund, life lessons, back to school, joy, bullied, letting go, pain, mom, bike ride, selfish, bleed

Cazandra is a pastor, author, columnist, motivational speaker, advocate, and encourager. She writes about the journey of raising two sons with severe hemophilia A with inhibitors. Cazandra’s older brother, Ronaldo Julian Campos, died of complications from hemophilia as an infant. She lives with her husband, Rev. Dr. Joe MacDonald, and youngest son, Caeleb (14) in Belen, New Mexico. She also has an adult son, Julian (24). Her book, “Dear Hemophilia: Finding Hope Through Chronic Illness,” is available on Amazon. You may follow her writings and view her TEDxABQ talk at www.cazandracmacdonald.com.

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…

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…

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…

Fear in the Face of a New Treatment

I am still waiting to hear from our hemophilia treatment center about whether our insurance will cover Hemlibra (emicizumab-kxwh) for Caeleb. Honestly, I’ve put it out of my mind for a bit because I know it is not a “done deal” until I have the product in my…

Feeling Guilty

Last week, my husband and I took our mighty warrior Caeleb to the hemophilia treatment center so that we could touch base with his hematologist. Caeleb recently had labs drawn, and it was time to sit for a meeting about his treatment. We were called to the back to…