Call me too optimistic, but this blog post was in my drafts with this exact title. I planned to post this blog five years post HSCT to gloat about all the wonderful strides I have made, plus the fact that my disease was in clinical remission.
Unfortunately I will not have that happen exactly as planned, because Dr. Burt closed the clinical trial 😦 😦 😦 He has decided to take a year off as a research sabbatical. While he is definitely entitled to it (After decades of being on call 24/7 for the trial), I will not lie, EVERY patient – past, present and hopeful – is sad.
I was one of the lucky ones who at least had a 6-months-post-HSCT follow-up (July 30 2019). And like I hoped, my disease is currently in remission. < insert joyous jumping and lots of celebration emoji> (Note – wordpress did not have this emoji)
Dr. Balabanov (study neurologist) watched me walk and recommended to keep doing PT. Hippotherapy was also recommended but I have to do some research about that. My platelets are low. So my general physician will be ordering regular blood work to monitor that. And IF these numbers hold steady, I get to travel internationally. “Amma” – I am coming 🙂
I did want to thank everyone for all the good wishes sent my way. While I am personally not a religious person, I believe a lot in “Intent”. I believe that once an intent is established, you’ll unconsciously work towards it. And for this I appreciate the intent set for me with all the good wishes. This is an acceptance speech after all – So I had to thank everyone that had a role, some of whom were kind beyond expectation.
BikeMS 150 – April 2019 – Kavitha Baratakke
Hope. Strength. Courage. Trust. 