Well, it's official. I am literally worth [half] a million bucks. Spread the news. Shout it from the rooftops. Tell all the single fellas out there that I'm a precious, rare gem who’s looking for love and measures her worth by the amount of Spinraza doses she has received. Yes, that's right, ladies and gentlemen. Yesterday, I received my fourth and final “loading” dose of the new treatment for SMA, and at $125,000 a shot, I can now technically say this little body of mine is worth half a million dollars. As exciting and wonderful and promising as this may seem, now more than ever, I'm scared.
Another day, another spinal tap. I think that's how the saying goes, right? The ride to Boston Children's was anything but peaceful yesterday. Bumper-to-bumper traffic on I-95 hit and, suddenly, I was most definitely going to be absurdly late to my third spinal tap procedure. Although only an hour away, smooth cruising en route to the city has never been a guarantee. Throw in a Monday morning and rush hour commute, my parents and I had basically set ourselves up for failure.
"I'm so sorry, Alyssa," my surgeon said for the umpteenth time. "I'm so sorry that was more difficult than the last time." Although my first procedure went incredibly well, that didn't guarantee the second time around would be the same. Unfortunately, I learned this the hard way, and that there were definitely some pros and cons to a lumbar puncture procedure when you have a ridiculously curved and twisted spine like mine.
"Okay, I'd like to call for a time-out," the attending announced in the operating room. "The patient's name is Alyssa Silva..." Okay, breathe, Alyssa. "...she is here for a lumbar puncture..." Deep breaths. "...we have consent..." Inhale. "...the injection is here..." Exhale. "...okay, then. I think we're ready to start." You can absolutely do this.
Sunday, December 4th. 5:47pm. It was another lazy Sunday evening at the Silva's when my mother's cell phone rang. On the other end of the call was my neurologist.
If I could relive this night over and over again I would. Thank you for daring to be remarkable and helping to make a difference in the SMA community. Here…