One of my most vivid childhood memories happened on our living room couch. I still remember sitting down with my parents as they explained to six-year-old me that my daddy was HIV positive. While I don’t remember their exact words, I remember hurling myself into my mom’s lap and asking if that meant my daddy was going to die. You see, as a child of a hemophiliac in the early 90s, I had already known people who had died from AIDS.
In my dad’s short 33 years, he made such an impact on everyone around him. I remember sitting at his funeral and being amazed at all of the flowers from people around the country. One by one, people hugged me and told me how amazing he was….and he truly was! Where others saw limitations, he saw opportunities to educate and encourage. I would like to think that he passed that outlook on to me.
Fast forward to the summer of 2016. I’m married to my high school sweetheart, Jason, and we have two beautiful girls! While we were on vacation, I realized that something wasn’t quite right. After an abnormal mammogram, I was referred to a surgeon who confirmed my worst fear: I was diagnosed with Stage 2 breast cancer at 32! This had NOT been in my plan for my life!
But sometimes, it’s funny to see how God works! Three weeks after meeting with my oncologist, I was making an appointment with another doctor…..my obstetrician! Through laughter, she told me that I was six weeks pregnant! To say we were surprised does not at all do justice to our emotional state!
On May 2, 2017, the world met Cayden James. We named him in honor of my dad without realizing just how much they would have in common. Within 12 hours of meeting our sweet baby, we were hit with a diagnosis: severe hemophilia A. To a mom whose dad didn’t survive the tainted factor, this was soul crushing news! In my post-partum mind, Cayden had lost the genetic lottery.
At our first hematology appointment, I was so overwhelmed by conversations about signs of bleeds, prophylactic dosing, port installation, helmets and knee pads! The only thing I was certain about was that my sweet baby would never receive plasma-based factor! Our hematologist attempted to explain that this could be a viable, and safe, option for Cayden, but my mind couldn’t get past my experience with tainted factor in the 1980s. We left Cayden’s appointment with arm loads of books filled with more information than my mind could absorb! Jason left feeling much more informed, while I just felt incredibly overwhelmed.
Enter our God-sent hemophilia family! My cousin is the mom of an extremely athletic teenager with severe hemophilia A. As soon as she heard that Cayden had hemophilia, she reached out to me via Facebook. In her first message to me, she reassured me, “This will NOT define him (Cayden)! Your dad was one of the bravest people I knew, and Cayden will be too!” Those words were like healing ointment to my worn heart! No, my tears didn’t stop that day, but there was a subtle shift in my outlook.
When Cayden was 15 months old, we reluctantly accepted the fact that it was time to schedule him for port surgery. I literally kept the reminder on my desk for three days before I worked up the courage to call our HTC to schedule the surgery. A few minutes after hanging up, our care coordinator called me back and said our doctor wanted us to research a new non-plasma therapy that was awaiting FDA approval. She told me to dig into research for two weeks, then we would regroup.
For the full two weeks, I was reading everything that I could get my hands on. I spoke with the representative for our area, and we attended an educational dinner. By the end of the dinner, Jason was hooked! Again, the early 90s flashed into my brain! How can we truly know if this is safe? It’s so very new, and this is my baby boy! After lots of conversations and prayers, I eventually agreed with Jason, and we let our hematology team know that we wanted to switch. We started anxiously watching for news reports announcing that the treatment had been approved for patients without inhibitors. When the news finally broke, I burst into tears! Jason and I both felt like our prayers had been answered. No, the new medication didn’t cure hemophilia, but it did remove the prospect of a port!
I don’t think I will ever forget how excited and proud I felt the first time that I gave Cayden his shot. It felt like reclaiming ground from hemophilia and doing a little more defining of this diagnosis! No, hemophilia will not negatively define Cayden or our family! It’s just another piece of our life. Just like AIDS didn’t define my dad, Severe hemophilia A will not define Cayden! Right now, we’re still learning his bubbly, athletic, cantankerous little self, but he’s so much more than a diagnosis! And hemophilia will not define me! Yes, I’m the daughter of a hemophiliac, but I’m the daughter of Ricky. I inherited his sarcasm, determination, and drive to encourage. Yes, I’m the mom of a hemophiliac, but I’m the mom of Cayden and his sisters, Brynlee and Camryn. Yes, our life involves weekly injections, yearly clinic visits, and remembering Cayden’s helmet….but it also involves love, music, sports and more Baby Shark than you can imagine!
Even though I began as an unintentional pledge, I am now a proud member of the hemo-mom sorority. If I can help one other mom find her superhero cape and learn that hemophilia will not define her family, it will be worth all of the tears. In the meantime, I’ll watch my sweet little guy grow and chase his own dreams with all his heart! Because after all, in our family, that’s just what you do!!