Jennie's MS Journey

So I got word from Northwestern today that I will be starting January 9! We will probably head to Chicago January 8th to make sure we get there in time for the first blood draw. It looks like I will be there for about 2 1/2 weeks.  I will receive the first round of chemo in the hospital and then I will be discharged and staying outpatient in the city where I will give myself daily Neupogen shots that I will self inject in my my stomach to multiply my stem cells. I cannot leave Chicago at this time. I will also begin oral antibiotics and do my best to avoid any sick people. At the end of this phase I will return to the hospital where they will extract those cells. This is called the harvest phase. After that, I am able to return home for about 8 days to be with the kids and in my own home in California.

January 30th or 31st, I will return to Northwestern Hospital where I will be admitted for the duration of the treatment. At this time I will receive a PICC line and I will receive 5 consecutive days of chemotherapy and immunosuppressants. These days are considered days -5 to 0. At day 0 (technically the 6th or 7th day) I will be re-infused with the harvested stem cells that were taken a few weeks prior. At day +1, I will have another day of immune suppressant followed by up to 12 days for my body to engraft. This is also where I will likely receive blood transfusions as my platelets will take a nose dive. This is a critical time to stay away from any germs as my immune system with be ablated to allow for the re-boot, essentially providing me with a new immune system. Best case scenario, by Feb 23rd (give or take a few days) I will be able to head back home back to the kids to begin the recovery process.

The most difficult thing about this is not that it may be painful or that I’ll lose my hair for a while. Yep, that is a huge bummer but having to do this so far away and not near my family is unfortunate. These types of treatments are performed right here in the bay area for cancer patients, but are unavailable to autoimmune diseases (despite very compelling data dating back 10 years or more) requiring patients to travel to Chicago to Dr. Burt and his team, to Mexico, Russia, or Sweden. Likely this will be approved around 2022, but by this time irreversible damage is occurring. The cost and distance prevents thousands of patients from having this option and that is really awful.

I’m excited to start this process and get it behind me but also absolutely hate the idea of leaving the kids here.  I also am concerned of some of the short and long term side effects that I could possibly face. Even with every one of those things, nothing is scarier to me than the issues I (and my family) likely will face in the future at the pace this disease is at. It is aggressive, no doctor has disagreed with that and primarily attacking my spine so now is the time to kick this thing to the curb. With all the research we have done, this is my best bet so I’m ready and grateful I’ve been given this opportunity by this amazing team of doctors!

Bring it.