Is my son’s hemophilia still a 24/7 responsibility?
For the MacDonald family, living with hemophilia looks different nowadays
I have fond memories of my dad sitting at the kitchen table on Sunday mornings. After attending church, he read the newspaper while the radio played his favorite Tejano music. He always read articles to my mom as they sat together, enjoying the morning.
The crisp newspaper would buckle as the pages opened. With each turn of a page, the paper rustled as my dad popped it straight. The texture of the newspaper, with its black and colored ink, often left residue on my hands and elbows as I lay on the floor reading the comics. Sundays were serene.
At 10 a.m., my dad’s favorite show came on. He looked forward to watching “Face the Nation,” the long-running CBS News program offering insight and analysis on the week’s top issues. Dad looked forward to the show because it only aired on Sunday.
Since then, I’ve often enjoyed listening to the news. Even just having it on as background noise while I’m getting dressed or cooking dinner can be soothing for me.
However, the 24/7 news cycle can easily become overwhelming. Over the years, my comfort in listening to the news has diminished. When my anxiety increases upon hearing about all the events going on in the world, I know it’s time to turn the channel off.
I’m glad I have the ability to decide whether to listen to the news. However, unlike the TV, hemophilia doesn’t come with an off switch. Parenting a child with a chronic condition is a 24/7 responsibility.
There’s no break from hemophilia
When I was asked to write this column in 2017, the title “Hemophilia 24/7” quickly came to mind. It hadn’t been long since hemophilia consumed the lives of everyone in my home. Inhibitors, constant joint bleeds, hospitalizations, and allergies to factor VIII were a regular part of life in the MacDonald household. However, I now look at hemophilia differently.
The disease no longer feels like a full-time job. My youngest son, Caeleb, is 17 years old. While his journey with severe hemophilia with an inhibitor is still full of complications, he hasn’t experienced a joint bleed since February 2014. Over the years, the anxiety and stress my husband and I felt began to lessen. We finally stopped waiting for the other shoe to drop.
In 2018, Caeleb began taking Hemlibra (emicizumab-kxwh), a product that has changed the treatment landscape for those with hemophilia A. Caeleb’s slow recovery from constant bleeding has been tremendous. The days when hemophilia occupied my mind 24/7 seem like a bad dream.
Yet I still wish things were better for my son. While he no longer bleeds into his joints regularly, he’s living with the painful aftermath of long-term bleeding. The damage to his right knee and ankle is significant. Caeleb is currently struggling with hemophilic arthropathy, or irreversible joint damage.
I never expected Caeleb to deal with this aftermath at such a young age. It’s heartbreaking to see my son in so much pain that he can’t walk, causing him to miss school. This also takes a toll on his mental health.
The worry that kept me up at night as I waited for my son to cry at the start of another bleed is now a distant memory. While hemophilia is still 24/7, I appreciate that I can do other things without constantly worrying about my son’s health. I can turn off the worry often, and this is a gift.
I may need to turn off the 24/7 news cycle more often, too.
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.