Sadie's MS Stem Cell Transplant Journey

Dearest friends and family-

For 21 years, I have been raising awareness for Multiple Sclerosis and the importance of research and funding towards a cure. For 21 years, it has been through the MS Walk for a general cause. This changes today.

As many of you know, I was diagnosed with Multiple Sclerosis in 2004. Post-diagnosis, I have been blessed to have gotten married and raised two wonderful children, something I wasn't sure would happen when first diagnosed. I tried multiple drug therapies, some more successful than others, and lived a fairly typical life, despite monthly hospital visits. In 2023, my luck began to change. On a Sunday evening, I was performing on stage, and on Monday night was hospitalized, unable to move my body or speak. With months of medical care and therapies, I was able to return to most of my past lifestyle habits, although with accommodations. In August 2024, I was hit with a minor exacerbation that changed everything. Right side weakness, instability, and inability to control my right foot (therefore drive) deemed me temporarily unable to teach, something I had done and loved my entire adult life. After months of intense physical and occupational therapy, the progress had not changed and I was placed on disability from teaching.

During this time, my neurologist, Dr. Bruce Cohen, informed us of a current trial that I qualified for. To qualify, you must have had 2 or more relapses over the past 3 years (check). The trial involves being randomized to either the BAT arm (Best Available Treatment) or the Stem Cell Transplant Arm. Scott and I thought it over for about five minutes, wondered why we were even thinking it over, and signed up! We recognized that the risks are many- but the possibilities... After 6+ months of waiting and pretesting- I received the phone call- I HAD RECEIVED THE STEM CELL TRANSPLANT ARM!!!

So- what does this mean??

This is the part where it gets intense. The procedure involves many steps- each step involving many moving pieces. First, I spend a night in the hospital receiving chemotherapy and multiple other drugs. The initial chemotherapy purpose is twofold: to increase white bloodcells and to help stave off an MS relapse. After the hospital stay, I will stay in a hotel across the street from the hospital for a week. The purpose of this is also twofold: to keep me close in case something goes wrong and because I have to get to the hospital daily for blood draws and PICC line flushing. I give myself multiple shots every day and am on an array of medications. My energy level is dipping by the day, so I am expected to have a caregiver with me each day- but especially over night. After a week, I will go to the hospital to have my stem cells collected and frozen, hopefully in one day- but as long as it takes to collect 5 million. Then I will go home and rest for a short while.

I will go back in a few weeks for the second, intensive part. This part involves a 6 day intensive chemotherapy where I am "knocked down to the studs," literally obliterating my entire immune system. At this time, they will transplant my frozen stem cells back into my body, in the hopes that they will arrange in a new immune system, one without MS. I will then spend several more weeks in the hospital to recover, as I will have a "baby immune system". Once I am deemed "street legal," I will return to the hotel for a bit longer for proximity and labwork.

The time following this amazing process will be different, for sure. It will be like Covid lockdown 2.0. I will need to be masked, revaccinated, careful, avoid crowds, etc- for quite some time. The goal is to enter full MS remission. The dream is to enter remission and reversal of symptoms!

The Goal

As I mentioned, I hope to enter remission- meaning no new lesions, no further disability. Ideally, I would be one of the lucky ones who was able to reverse some symptoms- that would be amazing! But, honestly, at the end of the day, if doing this could help people in the future from living a life with MS- worth it. I would spend every last day of my life with Multiple Sclerosis is if I could guarantee my children being freed from this beast.

How You Can Help

Not gonna lie. I started this "adventure" with a little plea for meal help. Which has been huge. But I wasn't looking at the big picture. We are fortunate that the hospital pays for all of the costs of the actual procedure and meds- which is well over 100k- but there are many things that are not included immediately or at all. Pre and post medical bills, including emergency dental care, hotel accommodations in downtown Chicago, parking for any overnight guests, 3 meals/day for me, lost wages during this time, living expenses, etc. The opportunity is absolutely amazing- but the impact is overwhelming.

I humbly ask you for any help you can offer to help us out during this critical time. Any contribution you can provide is appreciated- every bit will help us to reach the finish line that may be the ultimate goal of MS remission and recovery!!

At the end of the journey, we will donate any remaining funds back to further research for Multiple Sclerosis, through the National Multiple Sclerosis Society. I truly believe that we are so close to a cure and that together we can impact a lasting change!

Eternally grateful,

Sadie (Sarah Rokosz) Walton