When you’re a parent to a child newly diagnosed with a bleeding disorder, the immediate concern is for your child. What do I do next? Will they be OK? What will life look like from now on? You find yourself searching for answers and developing a support system…
Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald
The unimaginable has happened. My youngest son, Caeleb, had his port removed. Of course, when someone with a bleeding disorder has a port, it’s usually not forever, so why is it a big deal for my 13-year-old son? This was his seventh port. He has had…
“I’m so sorry. What can I do? I am here if you need me.” When we hear bad news about someone we love, most of us struggle to find the right words to comfort the one hurting. Sometimes, the best words are no words at all. It just…
The 1980s were my favorite decade. I was in high school, and my music was the most important thing in my life. I practiced hard for auditions in the hopes of making the Texas All-State Band. Life was good. My perception of that decade changed after my first…
In my home these days, hemophilia is like a family member who stops by for a fleeting visit — just long enough to say hello and give a quick hug, but not long enough for a cup of coffee. I hadn’t dared to dream that this situation would…
Columns
Self-care Isn’t Selfish
When you become a parent, your world instantly changes. Your life focus becomes the child that you have brought into the world. When your child has a chronic condition, the game changes dramatically. Not only are you concerned about the regular milestones that your child may or may…
The following is a group activity I like to do in some of the workshops and presentations that I give. Each person has 16 slips of paper and I ask them to write something on each slip. One category is the four most important people in their lives…
My mighty warrior Caeleb is about to start a new chapter in his life with hemophilia; it’s one I never imagined I’d see. About nine months ago, Caeleb began a new treatment with a medication that has been taking the bleeding disorder world by storm. Hemlibra (emicizumab-kxwh)…
Friday is a big day. My husband and I will take Caeleb to the Hemophilia Treatment Center for bloodwork. If all looks well, we may discuss removing his port-a-cath. Not replaced. Removed. It’s not that his veins are fantastic, but Hemlibra (emicizumab-kxwh) is doing what it is supposed…
My mighty warrior Caeleb is officially a teenager. His voice is cracking and becoming lower, he eats a lot, and he is growing taller every day. Where did the time go? Sometimes I feel overwhelmed by the passage of time; the older I get, the faster time seems…
Recent Posts
- Growing up before treatments for hemophilia were safe, part 3
- Early prophylaxis tied to less joint damage in severe hemophilia A
- I tell my son, ‘When you’re eating an elephant, take it one bite at a time’
- Holding space for grief and love in the hemophilia community
- Hand swelling is first sign of aquired hemophilia A for new mom: Report