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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