PLEASANTLY ANTICIPATING THE HANDS OF FATE: MY SPINRAZA JOURNEY

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“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.

My mother quickly went into the basement where my father and she were to take the call together, and, with good reason, I became a little concerned. I couldn’t remember the last time my neurologist called, never mind on a Sunday evening.

Fifteen minutes later, they emerged from the basement together with tears in their eyes and said, “Boston Children’s Hospital wants you to participate in the Nusinersen Expanded Access Program.”

Stunned, I wasΒ laying motionless for a minute trying to process what I had just heard. Overwhelmed with every feeling a person could possibly feel, I broke down.

Nusinersen is a drug that has been proven effective to treat patients with spinal muscular atrophy. Although not yet approved by the FDA, my doctor informed me that I qualified for Nusinersen EAP which is a program sponsored by the pharmaceutical company, Biogen. Doctors have seen tremendous strides in infants and children during the clinical trial phases. However, there’s a catch to this for someone like me.

Over the phone, my neurologist explained some inconvenient circumstances (as I like to refer to them) that could happen if, in fact, I chose to proceed with the treatment. First, to his knowledge, I would be the first adult with SMA type I to receive this drug, and because of this, there would be no guarantee that Nusinersen would be at all effective. His uncertainties stemmed from the fact that my disease has progressed greatly over the years and my nerves may now be too damaged to reap the benefits of this drug. Furthermore, he explained that the drug is administered through a spinal tap, and because my body is so weak, I wouldn’t be able to receive anesthesia like the other patients have in the past. Given the nature of my scoliosis and the fact that I’d be awake, he warned me that this procedure would be painful and potentially not doable. They wouldn’t be able to make any promises until I was on the operating table.

Although the odds were somewhat stacked against me, I knew the only choice I had was to proceed with the opportunity. I’ve waited for this my entire life- I had to, at least, try.

I felt caught somewhere between reality and living a surreal existence in the days following that phone call. My body felt more paralyzed than ever as fear overcame me, and my mind became consumed by the thought of the treatment. Despite choosing to move forward, I realized I could potentially have everything to lose. Maybe not physically, but it didn’t take away from the fact that everything I’ve ever wanted and hoped for could crash and burn in just a couple of months. I felt scared and shaken at the core of my being. I wanted this so bad, but knew that there was a possibility I may never get it. What would happen then? What would happen if what I have always dreamed of was just that- a dream and nothing more? My disease has taken so much of me already- what if it took this away from me, too?

The more I thought about it, though, the more I realized that, regardless of the outcome from this procedure, I would carry the strength within me that has endured the toughest of times. I would hopefully, in some way, contribute to medical research and the promising future of SMA. Because, if this drug is effective, this could forever change the way in which adults with SMA type I live. So, I decided to remain hopeful, but also with a clear understanding that there would be a great possibility that this may not work. In spite of my fears, I found comfort in faith in knowing whatever is meant to be will take its course.

img_1516So, on Thursday, December 15, I went in for my first procedure. With eyes closed and deep meditative breaths, I kept one ear on the Christmas music playing faintly in the O.R. and listened closely to the doctors with the other, hoping they would find access to my spinal canal.

As I was laying still on the operating table, the fluoroscopy machine spun around my body. My fears, expectations, disappointments, and hopes laid beside me. “Okay, let’s insert the needle [into the spine] one more millimeter,” the attending said for the third or fourth time while referring to the images. Suddenly, I felt a massive electrical shock in my foot and flinched in a way that I didn’t even know my body was physically capable of.

“We’re in! It’s time for the injection, okay Alyssa?”

Deep breaths.

Inhale.

Exhale.

This is really happening.


*This opportunity is something I have longed for- a fleck of hope far off in the future if you will. I owe this moment to family, friends and all who have loved me and supported me in my 26 years of life. They are the reason why I am here, living healthy and happy in this moment, today.

This blog post is the first one of a series of a new journey that I am embarking on. My goal is to remain as open and honest with you as I travel through these next few months. And, I hope you will follow along with me.*

62 thoughts on “PLEASANTLY ANTICIPATING THE HANDS OF FATE: MY SPINRAZA JOURNEY

  1. I am so thankful for your courage !! And may God be with you on this brace journey and I am praying for this opportunity to bring you strength and all the possibilities also !! Thank you for sharing you journey and I am so hopeful for this treatment for you and all affected with SMA !! Praying !!

  2. Words can not describe just how proud I’m am of your bravery and courage . I’m right there by your side all the way . Always your ” True North ”
    love ❀️ you to the moon and back
    Auntie RieπŸ’ž

  3. I know you through friends of friends….but you are seriously one of the most remarkable people in many ways. Keep up the good fight Alyssa. You inspire so many people. β™‘β™‘β™‘

  4. Your A true Inspiration!!! I’m going to share with my niece Videl SMA type 2 12 yrs old… she is so nervous about the injections we are waiting on approval …. Thank you for your bravery!!!

  5. My prayers are with you Alysssa. If anyone can conquer this it is you. Your story brought tears to my eyes. I will be here to follow your journey.

  6. When I think that you have amazed me as much as you possibly can, you find a way to amaze me more. I feel so blessed to have been able to teach you and get to know you. Much love always!

  7. This is such exciting news! You continue to amaze and inspire so many with your extraordinary perseverance and incredible courage!! Thank you so much for sharing your story and experiences. I am so proud of you and look forward to following you on this journey!! God Bless.

  8. I pray for you Alyssa! For you to have a miraculous gain for you and for all of our older SMA children! You strength, bravery, and persistence could make all the difference for the rest of the older SMA I population! Thank you from the bottom of my heart! Jennifer and Jacob (10.5 years old SMA I)

  9. Congratulations, Alyssa! I completely understand wanting to keep this to yourself but I’m very glad you didn’t. Thank you very much for sharing. My thoughts are with you!

  10. Through your friend, Charlie Davenport, I have known you. I occasionally see you at Honey Dew, and I am in total awe of you! Even though you did not come into this world with a healthy body, you have never let that keep you from reaching milestones that doctors never thought you would attain! You are a special gift from God, and I can’t wait to hear how this new drug is helping to change your body. No matter what the outcome – your hope and faith will get you through. You are a beautiful person who radiates love to all you meet. When you have some down days – and I know you must – know that there are so many who care about you and are constantly praying that this treatment will help you.

  11. Alyssa, you are incredibly brave and inspirational as ever! Please know that along with you on this journey are my greatest hopes and fervent prayers for success with the procedures upon which you have embarked. May God bless you and your loving family always. Merry Christmas, Remarkable Lady!

  12. Alyssa,

    We don’t know each other, but I wish you all the best and pray your dreams come true. I’ve read the comments and this has been said many times before but you are an inspiration. God Bless!

  13. Wow!!! Amazing!! Thank you for paving the world for SMA adults! You are so brave! My daughter will be an adult w SMA one day and I’m praying that you and all the others are paving the way for an easier life! Hugs to you and Merry Christmas!! β€οΈπŸ™πŸ»β€οΈ

  14. Alyssa!

    All the best to sweets!! As always your writing is beautiful and emotional.

    It’s been a while, we’ve met a few times through Mark Treat – at a DD, at The Foundry office and even bumped into each other while I was shopping at the mall w my daughters.

    Merry Christmas to YOU, your family and your gorgeous dogs!

    xx

    On Sun, Dec 18, 2016 at 8:00 PM Living with Spinal Muscular Atrophy wrote:

    Alyssa Katherine Silva posted: “”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”

  15. Having lost a niece and a nephew to SMA, you are my hero! I applaud your strength, courage and attitude, and I hope and pray that the procedure is a success. God bless you Alyssa.

  16. Alyssa, you have taught us all so much in the way of courage and strength when things are oh so difficult. Our prayers and thoughts go out to you and your wonderful family that good results will follow. Have a blessed Christmas. Love Fred and Judy Thibodeau

  17. I’m so proud of you Alyssa! I have faith that your participation will be life-changing for you and so many others. Thanks for your courage! Best of luck in the coming months.

  18. Good luck. Your my hero. Stronger than most I know. Think of you all the time. Fight on.
    Our prayers are with you.
    Mayor

  19. I’m glued to you blog and can’t wait to hear your next chapter. You are so courageous to share your journey with the world. Thanks for that.

  20. Alyssa I don’t personally know you but I have seen you around in the Cumberland feasts. I just read your amazing story and I would like to congratulate you on this amazing journey you’re about to face. You are very courageous and your strong willpower is extremely inspiring. I wish you the BEST of Luck! Remember to thank God everyday of your life, accept him as your savior and believe me, he will do a miracle in your life. God bless you beautiful!

  21. Alyssa, may fate smile on you and this new journey. How brave and inspirational you are. I hope with all my heart that you have a positive outcome.

  22. Alyssa – You kick butt in every way. So impressed. It’s clear why Abbey calls you her hero. I couldn’t have asked for a better role model. See you Christmas Eve!

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