PLEASANTLY ANTICIPATING THE HANDS OF FATE: MY SPINRAZA JOURNEY – PT. 4

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. I’m not scared of the needles or the pain or the tingling sensations I get in my foot when there’s a foreign object hanging out in my spinal canal. In fact, it has all become very routine. The local anesthetic starts to gently sting my back, and I know it’s time to close my eyes for a bit to try to take deep, meditative breaths to calm my nerves. (I also looked at the fluoroscopy machine screens once and almost passed out after seeing an x-ray image of a needle in my spine. So, it’s best I keep my eyes closed.) I keep my eyes closed and faintly listen to the doctors and nurses speak, shake my head ‘yes’ when the surgeon asks if I’m okay, and try my best to not start sobbing the happiest of tears when I hear the words, “we’re there”. Despite this happening every damn time, I successfully hold back the tears since I am pretty sure a grown adult crying in the operating room because she’s so genuinely happy would cause a major confusion and commotion.

One day my emotions will probably win. One day.

However, none of this scares me. Of course, it did a little at first, but, now, it doesn’t. What I’m scared about now is what’s next. What I’ve been doing all of this for. The reason for the needles, the pain, and the tingling sensations in my foot. The one thing that’s been keeping me up at night for the last two months. And, that’s whether or not this drug will work.

Fear can be a tricky thing. We recognize it. We feel it. But, we never let it win. Like I stated in my last post, sometimes diving into the unknown head first is all we can do from where we are.

love and friends

In some ways, I feel like my journey is just beginning. I’ve done my job and the doctors and researchers have done theirs, so, for now, I wait. I wait in spite of fear. I wait knowing that my body is capable of healing itself because it has proven so time and time again after every hospital stay. I wait because it’s really all I can do now.

But, amidst all this waiting through the unknown, I’m lucky enough to have a best friend who will accompany me to my procedure, forever be by my side especially during times like these, and make the wait worthwhile with her unconditional love and friendship.

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*Disclaimer: While my goal is to remain as open and honest with you on this new journey, the opinions expressed here represent my own and not the SMA community as a whole. Should you seek medical advice regarding Spinraza, please consult with a medical professional. Thank you for following along!

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Chronicling my journey while teaching the world that I have SMA, but it will NEVER have me. Life's what you make it, dare to make it a remarkable one✨

10 thoughts on “PLEASANTLY ANTICIPATING THE HANDS OF FATE: MY SPINRAZA JOURNEY – PT. 4

  1. You’re such a beautiful, brave young woman. And a pioneer for all the SMA kids and their families. Thank you so much.

  2. You girls are so lucky to have each other! Friends are everything! I could get wishy washy but I won’t. Whatever happens you will always be a rare gem, and I will always love you unconditionally! You are remarkable! 😘😘😘😘😘😘😘

  3. Alyssa, nice post! What a great photo of you and Amanda too!!! I look forward to coffee with you soon, when we can both meet. Lynne

  4. Great blog. I am concerned about the monetary value of your body. You may have opened yourself to kidnapping or being considered a lady of the night! Stay safe Princess! 😄😘😎💕💕

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