My mighty warrior Caeleb is only 11 and has had six ports. One cracked, another became infected, one literally worked its way out of his body. You get the picture. But when you are infusing daily for immune tolerance, daily peripheral sticks are not always possible. For the…
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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A symphony is a long musical piece with a clear structure, traditionally divided into four sections called movements. Each has its own tempo, mood, and rhythm. The pauses between them give the audience time to take in each part. Usually, the first movement is fast and lively. Then comes a…
Some words can be offensive. I’m not talking about some of the obvious, obnoxious words in the world, I am talking about two words in particular: disease and disorder. If you look at a list of rare diseases, hemophilia is listed. But you don’t ever hear anyone say,…
When your child is little and isn’t able to verbalize pain, you find yourself worrying constantly that you are missing something. “He’s crying, is he having a bleed? Or does he need a diaper change?” You must be the one who identifies why your little one is in distress.
The National Hemophilia Foundation hosts an annual meeting with workshops, exhibits, and social gatherings for the bleeding disorders community. It’s a time when consumers, providers, and industry come together to support one another. When you have been in the community for more than 20 years, the best…
“How many kids with hemophilia does it take to change a light bulb?” “None. Their mother will do it for them.” This is a joke that was told by a former HTC social worker friend. Of course, I chuckled, because I know there is an unfortunate amount of…
There have been seasons when hemophilia became the center of my family’s universe. A bleed would start and before it healed completely, it re-bled, or a new one began. Visits to the clinic for appointments, timed blood draws, unpacking factor and supplies, phone calls about co-pay assistance, factor…
Routine blood draws are a necessity when you have an active inhibitor. I try to get Caeleb’s lab work done at least every two months, and the results will give us his Bethesda unit (BU) and half-life status. Having a zero BU is ideal but that alone does…
It amazes me how people with a bleeding disorder just go with the flow, living their lives and accepting their routines as normal. They forget that what they do on a regular basis is nothing short of phenomenal. A little boy self-infusing is an amazing sight to see.
Changes are happening in the bleeding disorder community like I never imagined. New product after new product has hit the marketplace, each one claiming to be the best available. They all have great claims, with less infusing being the No. 1 draw. But how do you know if…
My youngest son, Caeleb, begins middle school this year. He is super-excited about starting the sixth grade, but I am not nearly as enthusiastic. He’s already thinking about new friends, changing classes, and joining the Pokémon club. I am worried about bullies in the hallways, his lack of…
Two likes. No comments. Just. Two. Likes. A friend, who has a son with hemophilia, told me about her daughter’s new diagnosis unrelated to bleeding disorders. She was scared and unsure of what to expect for her daughter, and as an experienced “hemo mom,” she immediately found a…
When my oldest son, Julian, started elementary school in 2001, I was encouraged to proceed with a 504 plan for his protection. Section 504 refers to the Rehabilitation Act of 1973 that guarantees the needs of students with disabilities are met in school. I was surprised when I…
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