Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald

My mighty warrior, Caeleb, has been in great health for the past five years. Five years of the occasional ear infection, strep throat, or allergies, but no bleeds. In the community where we’ve lived for the past 15 months, my son is seen as a regular eighth-grade boy. Many know…

My 13-year-old son Caeleb has had five years without experiencing any bleeding episodes. He developed an inhibitor at 11 months old, which is still active. Sometimes I find it hard to believe that he has been in such a good place with his health in recent years.

The start of a new school year is one of my favorite times. It smells of new pencils and crayons, lunchboxes, and my favorite, spiral notebooks. It’s a season of new beginnings, and when you have a child with hemophilia, you need the adults who will be teaching them…

Caregiving is hard work. When your child is chronically ill, caregiving goes beyond the expected parental duties. You have overwhelming responsibilities. There are doctor’s appointments, infusions, and treatments at home. There are hospital stays, lab work, and missed school days. Keeping up with your child’s medical condition can…

Over the past few months, my son Caeleb has complained of knee pain. “It’s not buzzy or achy, Mom,” he would say. “It just really hurts.” After his annual visit to a hemophilia treatment center this summer, his doctor recommended an MRI of Caeleb’s knee and ankle. Because…

It’s easy to look back and think about what one could have done differently. Handling a crisis with grace rather than anger, calling the doctor immediately instead of waiting, or keeping a diagnosis secret to avoid others’ judgment. We all make mistakes and, hopefully, we learn from them. Forgetting…

Raising two sons with hemophilia has taught me to be flexible. I have learned that my best attempts to make plans can be thrown out the window in an instant at the onset of a bleed. Treating a bleed, going to the hospital, or accommodating a rigorous infusing schedule take…

I have big dreams for my sons. I want them to go to college, have successful careers, and find loving partners. I hadn’t thought that these things would be out of reach for either of them. But I did believe at one time that my mighty warrior Caeleb would be…

My 13-year-old son Caeleb, who had severe hemophilia A and an inhibitor, has not had a bleed in five years. For three of those years, he received a daily infusion with a plasma-derived product, and for the past two years, he has been on a treatment that…

When your children move into adulthood, managing their bleeding disorder becomes their responsibility. I have worked hard to prepare my adult son. He says “adulting” is not fun. I laugh and tell him that he’s joined the club. He has ordered his own factor since middle school, but I…