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…
This week, we will consult with the surgeon who will have placed and removed six of my son’s seven port-a-caths. There will not be an eighth foreign object in “MacDonald the Younger’s” body, as it will not see port number eight. His treatment does not require access, and…
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…
All of the items I own are covered with breast milk; it’s on my clothes, bedsheets, even my phone. Its subtle sweetness occasionally attracts ants in the same way it appeals to my baby. I find the human body amazing for producing this miracle substance…
February 2014 proved to host the last bleed “MacDonald the Younger” faced thus far. The treatment plan created by our Hemophilia Treatment Center worked like a charm, and in the twinkling of an eye, the storm subsided and our quality of life improved drastically. What we didn’t…
As I write this, I’m bedridden from a bleed in my right hip. I’m learning what it means to have both hemophilia and a baby girl. Although I could see this bleed as a spirit-breaker, I’m readjusting, and I’ll be better prepared for episodes like this in the future.
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…
To the father of my daughter, Thank you for being present from the very beginning of my pregnancy — when those two lines first appeared, and you told me you didn’t know how to feel (despite us having planned everything out). Thank you for soldiering through those…
My youngest son, wife, and I just returned from an appointment with our hematologist concerning plans for treatment. In the twinkling of an eye, our worlds changed. We will move to a new procedure requiring an injection given every two weeks. How could this be? Wasn’t it last…
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)…
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