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Back to Reality


It’s been a long, exhausting few months. I feel like I haven’t stopped. It started with my follow up appointment at UC Davis for my second opinion. My mom and I flew back out to California so they could do further testing. It was determined that I have a very rare qualitative platelet disorder, Platelet Storage Pool Defect. Essentially, my platelets don’t secret their granules, the little sacs inside of your platelets that contain hormones and chemicals that, when released, stimulate other platelets to aggregate. Storage Pool Disorders don’t have many options in regards to treatment. Stimate can work but not always. Novo7 can work, but it’s incredibly experimental. He suggested a factor IX product that might work although it’s never been considered for Storage Pool Disorders. Ultimately, I was told that my best option for all bleeding would be platelet transfusions.

The news we received was initially a little defeating. I knew my current hematologist at home wasn’t open to giving me platelets for my symptoms. I knew he also wouldn’t be open to trying Novo7. I expressed this concern to the physicians at Davis and they agreed that I needed to find a new, more experienced hematologist in Denver. Currently, I am scheduled to see a new physician at the end of this month. I am trying to remain cautiously optimistic and not get my hopes up while keeping an open mind. So for now, that part of my disorder is to be continued.  

While I was at my follow up in California I missed the start of my junior year of high school. I had initially hoped, with some hesitation, that I could eventually return to the classroom. I finished my sophomore year on homebound services, a program in which a tutor came to my house for two hours a day and then the rest of the time I worked independently. I was extremely happy and incredibly proud to finish the year with perfect grades despite not being in the classroom for instructions and dealing with continuous bleeding. It was a great setup and I finally felt like I had shown the school my full potential. Since I missed the first week of classes I wondered if maybe homebound would be the right option for this year. However, we were told that was probably not a realistic option as homebound wasn’t supposed to be a long term thing. After many discussions with the school, it was decided that I would be enrolled into a program that allowed me to do my classes online at a local community college. This program allows me to work from home on days that I am bleeding but still forces me to be a member of society and interact with people my age on the days that I’m doing okay.

A little over a month ago I had the privilege of attending the National Hemophilia Foundation’s annual meeting in Washington D.C. I was able to experience my first national conference with my mom, which I was extremely grateful for because she and I have been on this journey together. We attended several sessions on platelet disorders and holy moly, did we learn a ton! But, I’ll save that for another postJ We also finally got to meet some members of the community we’ve only connected with on social media so that was awesome! On our last day there we decided to do a little mother daughter bonding and go see the sights. It was an unforgettable experience and I’m so thankful I got to experience it with the one person who has felt every second of the last few years with me.

As far as the other aspects of my life are concerned, I’m still just taking things day by day. I am extremely lucky to have amazing parents, an incredible best friend, and a fantastic community that help keep me sane.

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