Julie’s Story

Site created on August 15, 2020

Thanks for visiting my CaringBridge site!

To get you up to date…The bad news: I was diagnosed with multiple sclerosis (MS) a little over a year ago, and I’ve unfortunately had some loss of function in all four of my limbs, despite being on the best MS drug.

The good news: I received approval to get a hematopoietic stem cell transplant (HSCT) at the Cleveland Clinic for my MS.

HSCT is a procedure that will “reboot” my immune system through high dose chemotherapy to destroy my old immune system, followed by reintroduction of my own bone marrow stem cells to rebuild it. The goal of HSCT is to leave me with an immune system that no longer has MS. 

The procedure is grueling and has serious risks, but research studies have shown it’s the only treatment that can arrest progression of MS. Despite the risks, I am very excited to receive this treatment. This past year, I have watched my physical abilities erode as my disease has relentlessly progressed. For those of you who don’t know me well, most of my hobbies have been centered around often unconventional physical activities, including juggling machetes and flaming torches, collegiate rowing, robot-ing as a mascot for the Minnesota Rollergirls, and more recently, choosing among tapping, snapping, or napping in the wonderful martial art of Brazilian Jiu Jitsu. I am optimistic that this treatment will allow me to get back to my old self.

So, I’m heading to Ohio to receive world-class healthcare. I expect to be in Cleveland for about three months. If you  would like to learn more about the treatment, you can do so here: https://www.nationalmssociety.org/Research/Research-News-Progress/Stem-Cells-in-MS/Bone-Marrow-Stem-Cell-Transplant-–-HSCT

I look forward to having you with me on this journey. Thanks so much for your support. I can't wait until I have a new immune system, hopefully free of MS, so I can get back to great times with all of you.

Love,
Julie

Newest Update

Journal entry by Julie Hughes

"Victory starts here!"

Anyone who has been to Ft. Jackson in Columbia, SC, has heard this phrase, spoken by the Army guards when driving onto the base. Three and a half years ago, when I was at Ft. Jackson, collecting data with my work family for our research study, I had gone for an evening jog around the outdoor track after our work was over for the night. It was hot. And every time I tucked my chin down to look at the track, I had an electric sensation travel down my back and into my legs that were themselves going numb. I whipped out my phone and asked Dr. Google what ailed me. I didn't want to believe it, but the sensation was called Lhermitte's Sign, and it meant I had Multiple Sclerosis. I instantly knew life was going to get harder. What I didn't know at the time was that very instant, on the track, was the beginning of my healing journey. Admission into the hospital for a spinal tap and MRI, diagnosis, best available drug, relapses and failure of best available drug, visits to Cleveland Clinic, admission for a stem cell transplant, 20 bags of chemo and a brutal year-long course of complications, near death scares, leaving the hospital in a wheelchair, ditching the wheelchair, walking 50 feet, walking 100 feet, ditching the walker, ditching the walking poles, remaining secluded in the pandemic, entering life again, seeing my friends again, feeling great again, and then this week...collecting data at Ft. Jackson with my work family again. Tonight, on the eve of the second anniversary of my stem cell transplant, as we concluded our data collection, I went to the very same track. I ran a victory lap. I held my hands so high in the air and thought of every single one of you. I carried you with me around the track, as you had all carried me...to Victory!


Love, Julie

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