What to do when there is no clear path forward…

I went to my neurologist this week. This is what happened.

It has almost been a year since the rapid decline that catapulted me into making a decision to get a stem cell transplant. It was last December that I got COVID which sent my MS symptoms into a quick decline without the hope of recovering fully…I had reached the secondary progressive stage of this disease.

So in order to halt progression, we decided to take the drastic (and experimental) measure of getting a stem cell transplant. First I received heavy doses of chemotherapy to completely wipe out my immune system, then they harvested my own stem cells from my bone marrow, on top of more chemo, and then they reintroduced my stem cells back into my body to rebuild with the hope that the immune system can start fresh without MS.

That happened almost 10 months ago.

At my 9 month appointment with my hematologist, she spoke the unspeakable into existence and said, “it’s time to start planning where we go from here because the transplant did not work.”

I went numb. This is not what I was expecting to hear at this appointment! She showed me my blood work numbers and said that my immune system is not rebounding, my leg is clearly getting worse, and other symptoms are popping up.

“I was told to give it 2 years. Isn’t it too soon to tell?!” I wanted to sit there and put my fingers in my ears and start singing loudly to drown her out. How dare she bring this doubt into my mindset!!

She works with the BEATMS trials that are doing this same process in the U.S. at Mt. Sinai so she is working with other patients like myself. She just looked at me and said plainly… “the writing is on the wall. We can see the trajectory here.”

I was devastated. This wasn’t fair! I was alone at this appointment and wasn’t prepared to be getting HUGE news of this magnitude at all..but then again. Are we ever really ready for bad news?

I decided to keep going as I have been. Denial is my favorite flavor. But my light was dimmed a little bit. My positivity that I was the 2% took a hit. I decided that I needed to start being realistic and deal with this as if this was how it was going to be forever. But I also made appointments with my neurologist and my treatment team from Mexico. I want a plan.

So this week I met with my neurologist. He saw me right after the transplant and was so impressed at all it had done for my mobility. I felt like I was returning with my tail between my legs. Head hanging low.

He sat and listened to all of it and I could tell that he was disappointed in what was happening as much as I was.