This time of year reminds me of hope and the promise of new beginnings. In the spring of 2014, when my son “MacDonald the Younger” was 8, his life drastically changed. Along with our talented hematologist, Dr. Winter, we mapped a treatment plan that proved successful for my young, stinky boy.
Looking back, I remember the series of events that led to the quality of life that my son enjoys today. Below is a timeline by which he found strength and healing from continuous breakthrough bleeding episodes, which often left him unable to walk.
February 2014 — My son stayed in the hospital for approximately three weeks after an internal bleed into his right knee. He used a wheelchair and could not walk 20 feet without prompting a bleeding episode.
While in the hospital, Dr. Winter suggested we develop a road map detailing the treatment needed, then adjust accordingly. With the input of my family and the medical team at the hemophilia treatment center in New Mexico, we developed a holistic plan that addressed my son’s needs.
Some of the main issues we faced concerned the inhibitor that MacDonald the Younger had developed against the clotting agent and his allergy to factor VIII. His plan included treatment with a bypassing agent called FEIBA (anti-inhibitor coagulator complex), infused once daily. The infusion process took approximately 30 minutes. This treatment proved successful, as he did not have another spontaneous bleed.
April 2014 — While my son’s medical regimen helped, his mobility issues still prevented him from participating in daily activities. It was time to treat the allergy my son had developed to factor VIII. Dr. Winter suggested we visit an allergist at National Jewish Health in Denver. MacDonald the Younger and I went to the Mile High City and received care over the course of a week.
My son’s treatment plan was adapted to include a medicine called Xolair (omalizumab). Used in combination with the plasma-derived factor VIII product Alphanate (antihemophilic factor/von Willebrand factor complex [human]), the medical cocktail helped treat the allergy. My son’s road map changed as new possibilities for treatment continued to emerge.
November 2014 — The treatment plan continued to develop and ceased to include Xolair. Alphanate, given prophylactically, successfully prevented my son from experiencing breakthrough bleeding. He didn’t need a wheelchair as often, either.
Winter 2014-2015 — MacDonald the Younger no longer used a wheelchair to get around. We visited New York City in February 2015 without the use of any walking aids. Within another year, my son’s ability to participate in regular school activities had completely transformed. He continued to infuse daily.
April 2017 — Dr. Winter mentioned a new product on the market called Hemlibra (emicizumab-kxwh). Though it contains no factor VIII, the therapy has proven successful in protecting against spontaneous bleeding episodes. Two of the shot’s essential components include a subcutaneous injection (versus an infusion into a port or vein) and a long half-life (which calls for injections every two weeks instead of daily infusions). We still treat in this manner. Once again, the road map changed based on which available technologies can treat my stinky boy best.
Looking back over my younger son’s treatment history, it is not difficult to see that most milestones have occurred in the spring. Perhaps my feeling about new beginnings stems from my boy’s experience with timely medical developments. Whatever the reason, April brings excitement and joy to my family’s life. Hope comes alive, and we find ourselves smiling with confidence.
Whoever thought a medical road map could guide us through the roughest of circumstances and lead us to the quality of life we now know? We had no idea that our journey would teach us about medicine, companionship, and hope. Each stage brought new realizations regarding medical advancements and our ability to stay on course. We continue to look forward to each spring, with the awareness that each season provides new beginnings and opportunities.
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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