One measure of health when living with hemophilia
Finding a reminder of rougher days gives me a smile, now that they've passed
What do AA batteries, binder clips, bread ties, lip balm, pens and pencils, pliers, a glue gun, and a measuring tape have in common? They’re all items in my kitchen junk drawer. It’s a chaotic place that holds them till they’re needed at a moment’s notice. I’m grateful that it’s the only place in my home that’s in constant mayhem.
Recently, I tried to organize the drawer and came across a reminder of days past: a small, red tape measure in the far back corner, covered by notepads and rubber bands. This tape measure represents the dozens upon dozens typically strewn about my home. This particular measure, though, also brings me a sense of peace. It wasn’t used to measure furniture and the like, but for something else.
My youngest son, Caeleb, who’s now a high school senior, lives with severe hemophilia A with an inhibitor. During his elementary-school years, Caeleb endured bleeds in his right knee and ankle, which caused severe damage to his cartilage and synovium, the joint’s lining. The aftermath of this type of bleed results in the arthritic condition hemophilic arthropathy, which causes my son to feel debilitating pain.
The measure of a condition
Caeleb MacDonald’s right knee bleed in 2012. (Photo by Cazandra Campos-MacDonald)
When Caeleb endured bleeding in his right knee, we measured the joint at intervals to determine if it was getting smaller and thus better. For accuracy, my husband and I used a marker to delineate the exact space where the tape measure needed to be. Every few hours, I’d get the tape, set it between the lines, and hope the circumference was lower than it’d been. It was a difficult time in my son’s life, as well as our family’s.
The tape measure would often be the deciding factor that determined whether Caeleb needed to be admitted to the hospital or could stay at home. When calling the hemophilia treatment center to report on his condition, we had the numbers that detailed the increase or decrease in the circumference of his knee. That was critical. When the number increased, it was heartbreaking, but when the number decreased, joyful moments ensued.
Caeleb later began a treatment, Hemlibra (emicizumab-KXWH), that changed his life. He hasn’t had a joint bleed since 2014, so having these tape measures around and easily accessible is no longer necessary. Finding the little red plastic measure reminded me of years of heartache, but it also brought a smile to my face.
I’m happy that my son is no longer enduring painful joint bleeds. My heart overflows with joy that the years of bleeds and hospitals have passed. And most important, my soul is overwhelmed by the strength my son exhibited through those worst of times.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.
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Rajkumari Mehndiratta
So inspirational.. hemlibra has worked wonders and helped families ..