Tell the story of the mountain you climbed. Your words could become a page in someone else’s survival guide. Morgan Harper Nichols
I recently received a donation from a very important person in my HSCT journey. Funny thing is, he didn’t know of his important role for years.
My MS diagnosis came very quickly in September 2010. Within 2 weeks of losing my color vision and having only partial vision in my left eye, I was sent for MRI’s and it was conclusive. Multiple Sclerosis. To be honest, I couldn’t even say the word sclerosis without fumbling, it doesn’t roll off the tongue very well. After IV steroids and weeks of high dose steroids in pill form, it was time to start one of the standard MS drugs on the market. My neurologist chose Avonex, which was a once weekly injection.
October 30, 2010 would be my first injection. I was nervous and anxious about it. I had read all the expected side effects: fever, body aches and nausea. My plan was to take it at night hoping to sleep through most them. Thankfully we had a late afternoon neighborhood Halloween party to take my mind off the upcoming injection.
My youngest had just turned 7 and he was busy playing with all the neighborhood kids. Fun and games were going on around me but my mind kept straying back to the stupid injection. As if the universe knew I needed a distraction, my son popped back over from the face painter.
Fierce as a tiger and wearing the MS color of orange, I knew then it would be okay. Funny how children are able to reassure when they aren’t aware they are. My husband was off chatting with a neighbor that I didn’t know, so I joined them. They were chatting and the conversation turned to my MS and the upcoming injection that night. This neighbor, John, then shared the most incredible story:
His sister had MS. Apparently her MS was quite bad and none of the medicines on the market worked so she partook in a trial at Northwestern University in Chicago, IL. John explained that it was a groundbreaking treatment that involved chemotherapy and stem cells. His sister was one of maybe 15 that took part in the study. John said that she had a lot of improvements but he didn’t know all the details since it was years ago.
This story had my mind going a million miles an hour. Was something like this possible? Would this be a possibility for me someday? Quickly enough though, it was time to go home. I injected myself and was down for days. I missed trick or treating and work. Finally the symptoms eased and life resumed until the following weekend. This started a cycle of work during the week and being sick every weekend. I eventually moved the injection to Friday night hoping I could eek out some fun on Sunday if the symptoms eased early.
After changing neurologists, my liver was checked to see if my body was tolerating the Avonex injections okay, it wasn’t, my liver levels were off the charts. I was immediately taken off Avonex and put on a different medication, a daily injection called Copaxone. Through all of this, my symptoms worsened, and each subsequent MRI showed progression. I was now using a cane and rapidly declining.
One day after another fall and more embarrassing symptoms, I decided to google old trials at Northwestern. I was hoping to find out what became of the trial and if anything was on the horizon. Surprisingly, there was a new trial going on, a phase 3 trial. Something called HSCT, Hematopoietic Stem Cell Transplantation. I knew right away that this was the same treatment that my John’s sister underwent. On a whim, I sent an e-mail in for more information.
The rest is obviously history. Funny thing is, during all of this, I didn’t see John very often. He wasn’t a direct neighbor so our paths didn’t cross. It wasn’t until about 5 years later when I was running by his house that I saw John in his driveway. I stopped to say hello and to thank him, not knowing if he would even remember me or recall the conversation years earlier.
A chance encounter, a unknowingly important story that changed the course of my life and my family’s life. The power of sharing his sister’s story gave me what I needed to conquer my MS mountain.
John, thank you for your donation and please thank your sister for being a pioneer for myself and countless others in the past 15 years. Thank you all who have donated so far! Your donations will directly help others obtain HSCT through AIMS Charity. Please continue to share the link: https://uk.virginmoneygiving.com/fundraiser-portal/fundraiserPage?pageId=1085797