The Secret Is in the Refrigerator

I often tell people to check my refrigerator if they want to track the development of hemophilia care in my family. For example, when my sons were small, the medicine they required, factor VIII, took up a full refrigerator, requiring us to buy a second one. As for other medical supplies, we purchased several drawers and stacked them on top of one another. They contained infusion needles, gauzes, Band-Aids, syringes of all shapes and sizes, and everything but the kitchen sink.

Our “specialty pharmacy” sat in a prominent place in our kitchen. It always seemed to cast a foreboding look at us, saying, “Hey, look at me. I am a huge part of your life whether you want me here or not.” Sometimes I looked the other way to get a brief respite from the unwanted presence of all the medical supplies that appeared to take over my house. We went through 28 syringes every week (four per day) and used up the other supplies needed to infuse my boys.

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When my youngest started using Hemlibra (emicizumab-kxwh), we noticed a dramatic shift in our treatment. Gone were the 1-inch needles and other infusion necessities. Instead, the new treatment required only a subcutaneous injection, without any of the prep work or previously needed supplies. Additionally, the need to find veins or utilize a port-a-cath to infuse became a thing of the past.

One day, the medical cabinet ceased to occupy space in our house. All the materials we needed fit in one little container, and we no longer needed a second refrigerator for factor VIII products. In the blink of an eye, hemophilia occupied far less space in our house. That didn’t mean that we could close our eyes and pretend that our sons didn’t have bleeding disorders, but with the advent of new treatment, life appeared more effortless regarding hemophilia.

As I look back on my sons’ lives, a powerful lesson leaps out at me: The only constant in life is change. I reflect on the many years I looked at our kitchen pharmacy, thinking we would never see a day without an insane amount of medical products claiming space in our house.

Years later, my family’s reality appears quite different. Change, in this case, proved a welcome guest. I smile as innovations in care allow for a life that I could never have imagined just several years ago. There’s no telling what lies ahead of us, as developments in the care and treatment of bleeding disorders progress.

In addition to change, another component of my lifelong learning is the nature of hope. In the middle of the darkness — be it the insane amount of product we stored, or the hospitalizations my sons experienced — at the core lay hope. My spirit cried out in faith that life would change, and one moment gave way to another. I often became trapped in a wave of anxiety, imagining that struggles with hemophilia might remain the same. Yet in the darkest of moments, hope reminds me that change is inevitable and that a new day brings promise.

I also realized that change does not limit itself to medical equipment or advances in treatment. I think of the man I was upon hearing my oldest son’s diagnosis and the man I am today. My experiences shaped me into a person who appreciates his situation. My boys continue to teach me to keep evolving and growing in self-awareness, patience, and love.

Through the changing seasons, I feel gratitude for the joy of raising my incredible sons. I hope that new medical products will soon make life easier for the bleeding disorders community. Hopefully, we continue to learn important lessons that shape us into the people we can be. And to think that with me, it all started with my refrigerator.

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.