Friday is a big day. My husband and I will take Caeleb to the Hemophilia Treatment Center for bloodwork. If all looks well, we may discuss removing his port-a-cath. Not replaced. Removed. It’s not that his veins are fantastic, but Hemlibra (emicizumab-kxwh) is doing what it is supposed…
Hemophilia 24/7
— Cazandra Campos-MacDonald
Rev. Cazandra Campos-MacDonald is a pastor, author, motivational speaker, and encourager. She lives in New Mexico with her husband, Rev. Dr. Joe MacDonald, and youngest son, Caeleb. Their adult son, Julian, is living the bohemian life of a starving artist and goes wherever there is an audition. Her sons live with severe hemophilia A and inhibitors. Her older brother died shortly after birth due to complications from hemophilia. Cazandra writes candidly of raising two sons with a rare bleeding disorder. She believes storytelling is about redeeming the journey and connecting with others.
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Every week, I lead the pastoral prayer at church. It’s a moment to share what brings us joy and what weighs on our hearts as a congregation and a community. I always pray for the unhoused, the hungry, the grieving, and our country. But there’s one group I often mention…
My mighty warrior Caeleb is officially a teenager. His voice is cracking and becoming lower, he eats a lot, and he is growing taller every day. Where did the time go? Sometimes I feel overwhelmed by the passage of time; the older I get, the faster time seems…
I have been part of the bleeding disorder community for over 20 years. The early days were filled with fear as I learned about hemophilia with my newborn son. Over time, I began to feel a little more comfortable with this rare genetic bleeding disorder. I wanted…
I’ve been cleaning up my computer files and finding pictures everywhere except where they are supposed to be stored. One photograph caught me by surprise. My mighty warrior, Caeleb, went to a monster truck rally in 2014. He took a great picture with the driver of the monster…
I often find myself thinking back to the advice my parents gave me over the years. Of course, I considered it “nagging” rather than advice at the time, but the older I get, the more I realize my parents were two of the smartest people I’ve ever known.
I married the love of my life on Dec. 19, 1992. I laugh when I think about how young and naive we were when we began our journey as husband and wife. I had some ideas of how my life would turn out regarding my career, our home,…
I am already looking forward to 2019. The first half of 2018 was not filled with joy, but fortunately, the last six months have been pretty wonderful. Part of this has been Caeleb’s new treatment with Hemlibra (emicizumab-kxwh). It has truly changed our lives. His quality of…
I vividly remember attending my first bleeding disorder conference in 2008. It was overwhelming. The exhibits had products and services that my son would need, and the workshops and topics were new and very unfamiliar. The attendants seemed like they were at a family reunion! How did they…
At this time of the year, I like to clean. Not just dusting and mopping, but also purging my home of unnecessary items. Unworn clothes, worn-out shoes, and overwhelming stacks of papers and magazines. The other important area that needs a thorough inventory is my home medical supply…
The Thanksgiving holiday is upon us. It’s my favorite time of year. Family feasts, playing games, going to the movies, and watching football are some of the traditions that many of us hold dear. One Thanksgiving tradition my family keeps is that each person at the dinner table…
My seventh-grade son, Caeleb, is the new kid in a small, rural community where everyone has grown up together, so it’s hard to fit in and make friends. He comes home most days with a tale of mistreatment or insensitive comments directed at him. It breaks my heart,…
Perhaps the most important lesson we learn at school is to keep our hands and feet to ourselves. I have thought about this rule every time my sons have complained about an incident at school. I remember my kindergarten teacher, Miss Paula, teaching my class that lesson. Best.
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