For some hemophilia can get complicated, and it did for Lane. He has an inhibitor which means clotting factor doesn’t work the way it’s supposed to in stopping his bleeding episodes. Our family became regulars at the emergency room. For as long as I can remember I accompanied my brother and was at his bedside during many, many ER visits and long hospital stays. My parents had me tested for carrier status when I was a toddler. I feel relieved to know I am not a carrier and that my future children won’t have to go through what Lane has.
Regardless of my awesome sister status, Lane was pretty impatient with me when we were younger. I’m sure I was as nice as can be, but he always wanted to get his own way – what brother doesn’t. I still find him only semi-tolerable, but truth be known we are very close and get along well, but why admit such things.
Especially when we were younger, he and I loved to wrestle any time he didn’t have a bleed, but that wasn’t very often. I could pin him and claim victory almost every time. Part of winning, though, was because of his hemophilia. He often had a tender joint or two which I felt bad about, but I still didn’t mind the WIN! Sure, it was an unfair advantage, but all is fair in love and wrestling.
He started a new medicine a few years ago and ever since, he rarely has a bleed. He’s grown bigger, stronger and takes no mercy. Now I can no longer win a wrestling match, but it’s okay, I think it’s his turn to be the victor. I’m all about being a supportive sister and I am his biggest fan! Now, we can do so many more things together that used to be considered extremely dangerous for him, like riding dirt bikes. It’s a lot to worry about when your older brother has a bleeding disorder. Even with the new medicine, I still worry about it, but not as much as I used to.
Having brothers with hemophilia can be hard sometimes, especially where we live. Getting help for any kind of an emergency is at least an hour away. For appointments with specialists, we have to travel 9 to 10 hours each way. If you have not already guessed, we live in a very rural area.
When I am on a break from sibling quality time, I enjoy painting, swimming, athletics, riding horses, and working on our ranch. One of my favorite things is baking and decorating cakes. I started baking when I was much younger. I donate cakes to folks from our church and birthday cakes to relatives. I have made many cakes for my siblings, cousins, and an aunt and uncle. I even recreated a 50th anniversary cake for my grandparents from an old photo! The most cupcakes I have ever made at once was 270 for my cousin’s graduation party.
This summer I will be creating a wedding cake for a dear family friend! I never would have thought I would get this far or skilled at making cakes let alone have the opportunity to decorate a wedding cake!
Lane loves being my taste tester. He is not afraid to tell me if something tastes bad. After he started his new medicine, I made a “100” cake for him to celebrate the first time he went 100 days without a bleed. One of my next cakes will be for his high school graduation. I can’t wait to smash it in his face, and then steal his bedroom when he moves out! The bond is strong between siblings, and we wouldn’t have it any other way.
Securing access to prescribed therapy, resolving insurance issues, and dealing with medically-related financial burdens represent some of the health system challenges faced by members of the bleeding disorders community. Our Patient Navigation Program is here to help!
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