An Old Injury, a New Pain

I sit waiting for my youngest son to complete an MRI of his right ankle. He has been overwhelmed with pain from constant breakthrough bleeding episodes. For a while, recombinant factor VIII was working to treat his hemophilia and we were euphoric, but we soon learned that internal bleeding had left him with damaged joints, notably in his right ankle.

Today’s procedure will help determine the extent of the medical issues that my boy faces.

As he lies in the room next to me, I want to run in and say, “Here, take my ankle, and I’ll take yours.” I want to rage because it is not fair for a 15-year-old boy to suffer from so much internal damage that he is left with a limp. He is young; treatment should protect him from these issues. He has endured so much. Can’t he catch a break?

My son was hospitalized sometimes for weeks and months on end because of spontaneous bleeding episodes in the right knee and ankle when he was younger. His treatments were complicated because he was allergic to the infused clotting factor, causing his body’s immune system to fight it. He experienced so much pain until the medicine would start to work to stop the bleeding.

Recommended Reading

September 29, 2021 Columns by Cazandra Campos-MacDonald

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

As he got older, he found some relief. We experienced a normal life. But we didn’t realize until “MacDonald the Younger” began doing marching band in eighth grade that the bleeding episodes he had when he was younger had taken a toll. One day, during a rehearsal, he called me in pain. “Dad,” he whimpered, “I need for you to pick me up. I am in a lot of pain.”

I drove to the field and talked with him, unable to comprehend what he was feeling. While I held back from trying to talk him out of his pain, the idea of returning to the chaotic world of bleeds and hospitals almost became too much for me to take in. Once my anxiety subsided and I listened to his complaints, he explained that his pain didn’t feel like a bleed; it felt like an ache in his joints.

We took him to see his hematologist, who confirmed that he suffered from post-traumatic issues resulting from continuous spontaneous bleeding episodes into the right ankle and knee. She ordered an MRI to inspect his damaged joints.

Which brings me here. As I wait for the results, I find myself torn between wanting to know what we face so we can prepare for battle, and wanting to put my head in the sand. In the end, I know that it’s best to be informed so that the medical team and my family can make the best treatment decision.

My son comes out of the radiology room and tells me that he is finished and ready to go home. I look at him and smile, hoping that the news we receive is easily manageable. We laugh together as we try to remove the hospital bands from our wrists. We reassure each another that we will never face adversity alone, no matter what happens. Knowing someone is in our corner 24/7 gives us room to breathe. We take in the joy of our relationship, even in the darkest of circumstances.

***

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.