I’m proud of how my son’s treatment adherence has improved over the years
As Julian pursues his dreams, he's learning that his medication isn't optional
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My oldest son, Julian, has one life goal in mind: to make it to Broadway. From his earliest years, my boy would sing for anybody who would listen to him. While we share a love of music, I admit that he can sing so much better than I ever dreamed. There is something rich and naturally beautiful about his voice. He floats to high notes as if they were simply an extension of himself. There is no strain or tension in the sound.
Now, I know I am very biased toward Julian. I acknowledge my impartiality without shame. My joy as a dad comes from watching my son grow into a confident individual who manages his hemophilia and pursues his dreams. My wife and I love watching him take control of his career and fight to climb the ladder of success. The way he engages in the ups and downs of his chosen profession is what I consider my finest work of art.
Julian turns 30 next month, and one of the many things I respect about him is the evolution of his thoughts on maintaining his prophylactic treatment regimen. When he was younger, he showed little interest in infusing his recommended dose of factor products. For a little while, I tried scaring him into treatment adherence.
One time, I discovered that my son had not infused himself in at least two weeks, and I wanted to go through the roof. “Son,” I asked, “What if you get cast in a show, but can’t fulfill your obligation due to a muscle or joint bleed?”
After graduating from college, Julian started his career in earnest. He booked his first professional musical at an outdoor theater in West Texas. From there, he did several shows in North Carolina and other parts of the country. He is currently on a national tour of “Saw: The Musical,” and will perform in it until the end of 2027.
My young Padawan
As he continues to travel the country, I’ve noticed that something has changed in him. He pays close attention to his medical needs and finds ways to order Hemlibra (emicizumab-kxwh), the clotting agent he needs, to the town where he’s performing. A few nights ago, he called to let his mom and me know that he had asked his pharmacist to deliver his medicine to his address in St. Louis, his next stop. His proactive approach highlights his commitment to managing his condition responsibly.
He said, “If I’ve learned one thing in this business, I know that I must take care of myself and inject my Hemlibra doses on time.” He went on to explain some of the physical issues he had when he didn’t treat as prescribed. His mom and I laughed as he said, “I understand now that the ‘required’ dosage is not the same as the ‘suggested’ dosage.”
“Ah, yes, young Padawan, your maturity shines brightly,” I said.
He laughed at my poor attempt at Yoda’s voice. “Yes, Dad. I know I have to be diligent and avoid unnecessary risks to my health. I guess some part of me wanted to deny that I would ever have complications related to hemophilia.”
I told my son I was proud of the man he’s becoming. I said, “Give yourself a little grace. We discover things about ourselves when we feel ready to hear them. Sometimes it takes years to accept some truths about ourselves. The most important thing is that we discover life’s lessons in our own time.”
As I told Julian I loved him, I realized something about his battle to become the man he wants to be. Throwing a chronic illness into the mix presents challenges that I will never fully understand. I do not pity him. I admire him. He continues to overwhelm me with strength and a passion for living. My son may be turning 30, but when I look at him, I still remember those 5-year-old eyes that lit up every time he sang in front of an audience.
Julian’s passion for singing hasn’t waned. Hemophilia makes its presence known, but it does not define him. He knows that he must treat his bleeding disorder as instructed to continue to enjoy his career. What he does not realize is that when I see the joy in his eyes, I look up and say, “Thank you for giving me this boy with a unique way of moving in the world.”
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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