A Mom’s Honesty: Dreading the Return of Hemophilia Treatment

Is it starting again? Is hemophilia about to take over my world?

For more than seven years, my family has enjoyed life with hemophilia in the background. My youngest son, Caeleb, is 15 and has severe hemophilia A with an inhibitor. His early years were filled with complications that led to pain and joint damage. A revolutionary hemophilia treatment, Hemlibra (emicizumab-KXWH), changed his life, and until recently, he had seen few limitations since being treated.

But recent events have brought hemophilia to the forefront again. I am trying to prepare myself for the appointments, scans, and blood draws to come. I am not sure I am ready.

I know how to be a “hemo mom” in the middle of a crisis. When a bleed begins, I know exactly what needs to be done and can calmly help my son. Caeleb’s bleeding history often used to lead to hospitalizations, which is when all the planning and thinking about what happens next really kicks into gear. One crisis after another is something I can handle.

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I am grateful Caeleb is not in crisis. However, I am facing an uncertain time. An MRI is scheduled, and once that is complete, the hematologist will schedule an appointment with us to discuss hemophilia treatment. After that, we’ll have appointments that likely will involve lengthy clinic visits for observation after factor is administered. It often takes hours for such appointments. This process may take a few months.

As part of this hemophilia treatment, Caeleb must resume physical therapy. I will take him to it each week, which is a 45-minute drive. Because of chronic pain, he must work on regaining strength in his core. It isn’t fun or easy, and can sometimes be painful. The hard part of physical therapy is that the results are not instantaneous. Giving up is easy when it’s hard to see results.

Part of me is already resentful. This is a terrible statement for a mother of a chronically ill child to admit. Since Caeleb has been bleed-free, I have reclaimed parts of my life that were long gone. I found time to earn a master’s degree and entered a new profession. I even found time to play and create each day. I love my life, and now hemophilia is threatening to take some of my time away again.

Of course, nothing will ever keep me from doing what is best for my son. I will stop at nothing to help him find the best care, medication, and therapy needed to have a fulfilling life. I want Caeleb to understand that even when there are bumps in the road with hemophilia, there is always a way to maneuver well in life with a bleeding disorder.

I will give thanks for the seven years we had with so few disruptions. These seven years have given my son a freedom that he had yet to experience. Perhaps the upcoming challenges will be met with relatively easy answers. Who knows? Maybe we will go another seven years without a problem.

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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 Services, and are intended to spark discussion about issues pertaining to hemophilia.