From exhilaration to fear to celebration of my adult sons’ lives

I must admit that, as a father, I dreamed of greatness for my sons. While Cazandra, my wife, was pregnant with each of my boys, I envisioned a global career for them that would transform the world. With my measurement of success as a guiding light, I imagined the ease with which they’d achieve their dreams. In my fantasy, they wouldn’t struggle or want for anything.

My fluffy dream cloud burst with the diagnoses that revealed both boys had a severe factor VIII deficiency, better known as hemophilia A. I reacted differently to the news each time.

I shouted for joy when Julian, my firstborn, entered the world. When we learned that he had hemophilia, I was filled with a mix of emotions, among them fear, uncertainty, and a deep sense of responsibility.

I asked the doctors, “Will he live?” They assured me that Julian would live a long life. I felt relieved and again felt joy, but the fear and uncertainty lingered.

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Julian didn’t have the horrible breakthrough internal bleeding that could’ve occurred, but he did have struggles. He developed a low-titer inhibitor, but he could still use his medication to treat bleeding episodes. His medical team chose to place a port-a-cath on the right side of his chest and treat him once a day with recombinant factor VIII, often known under the brand name Recombinate. The protocol worked, and my son moved from doses every day to getting them three days a week.

At that point, I realized something new: The goals I’d set for my son needed to evolve and would now encompass the management of all medical issues related to his bleeding disorder.

When Julian turned 6, our hematologist removed the port-a-cath, and we discovered intravenous infusions, along with other new vocabulary. The transition to infusions was difficult for Julian, and he struggled with it for at least a year. He developed a fear of needles, making the process of infusing him a challenge. But he didn’t give up. He rose above his fear to find his veins and infuse himself.

Regardless of what life path he’d take, Julian had learned that managing his condition was paramount. His increasing independence in handling his health is a testament to the human spirit’s resilience. His aspirations required a new level of concern, I realized, and he’d always have to consider his hemophilia in his decisions. His resilience in the face of adversity remains inspiring.

Another son’s challenges

When Caeleb, my youngest son, came into the world, we were astonished when the medical team diagnosed him with hemophilia, too. We’d thought there was no way that our little boy could have a bleeding disorder; we’d thought Julian had a spontaneous genetic mutation. But with Caeleb’s birth we learned that Cazandra is a carrier who’d passed the gene to both of our boys.

Accepting Caeleb’s diagnosis was a more arduous journey than Julian’s. The thought of raising another son with a bleeding disorder was daunting. We grappled with the fear of needles, the task of explaining hemophilia to him, and the acceptance of the challenges ahead. We mourned for our son, who we believed did not deserve to live with a bleeding disorder. But as time passed, we learned to accept and adapt to our new reality, finding hope in our ability to overcome.

Caeleb showed difficulties from the start of his life. Before he turned a year old, we learned that he struggled with an extremely high-titer inhibitor, and treating him with the recommended clotting medication proved useless. Caeleb struggled with an allergic reaction to his medication, had numerous spontaneous bleeding episodes, and developed mobility issues. Frequent hospitalizations kept our lives confined to a room on the sixth floor of the special pediatric unit of the University of New Mexico hospital. He continues to struggle with chronic pain because of the numerous bleeds in his right knee and ankle.

Through it all, my boys continue to seek their dreams. Julian continues to make a living as a performing artist while Caeleb majors in computer animations at the University of New Mexico. Their determination to pursue their passions despite their condition is truly inspiring. My boys gladly embrace their ways of achieving their goals and moving through the world, seeking the things that bring them joy.

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.