On Sunday October 30th after spending only four short days, one of which as a an outpatient still at the hospital for labs, Dr apt, 2 bags of platelets and a bag of blood, I was re-admitted back with a 102.6 degree fever. I wasn’t happy and had no desire to go what so ever.  But of course I did.   For the next few days I spent the days in cold sweats, immense body/joint pain and headaches where I could barely lift my head coupled with fevers in the 104 degree range.  Sounds horrible and it was horrible.  Every single part was terrible.  So during these bouts the team was trying to figure out if this was side effects from the blincyto treatment or an infection.  This we still do not have the answer, yet as of right now.  Regardless the team decided to stop the Blincyto treatment because they felt as though it was not effectively killing enough of the white blood cells.  So I guess we kind of just pissed away $187,0000.00 down the drain.  So just like that no more blimp.  To be honest that shit was rough.  So, million dollar question -what is the next course of action?  I will now be part taking in a clinical trail called Car T Cell Immunotherapy Treatment (protocol title:  The Rocket Study: A phase 2, single-arm, multicenter Trail to determine the efficacy and safety of JCAR015 in adult subjects with relapsed or refractory B-cell acute lymphoblastic leukemia).  I will be one of about 200 other people from around the country participating or have done this.  From what I have read thus far, it is a brutal treatment that is extremely brutal on the body.  For all those really wanting to know the details of the trail, here is  a link to the actual government for submission.  Car T Cell Clinical Trail There is a lot of information that is overwhelming.

So we are going down a path of uncharted territories.  With this new phase, there are a ton of front end tests that we are currently tackling at the moment, like a lumbar punch with IT chemo, MRI, CT Scan of pelvis/stomach, bone marrow biopsy, blood work, and neurological consult just to get to remission.  That is the end goal.  Going through this clinical trial just to go into remission to then go for a stem cell transplant.

Whoa, it is too overwhelming for me to comprehend.  There a lot of moving parts that are scarier than you can imagine. So I guess he million dollar question is when will I get to go home???????  The answer is …..Not any time soon.  On the light side i am gearing up for a wonderful 2 month stay (my guess is it will be more like 3-4 months)  at the loverly Northwestern Prentice Hospital overlooking lake Michigan.  Could be longer.  It really all depends on how my body will tolerate the treatment, which I will dig into more in later posts.  

I am ramped up to be living out of 500 square feet of room without stepping outside.  Good times.  I am just trying to mentally get myself ready for sleepless nights interrupted by vitals/meds/nurses.  Ohhh boy, I am buckled in and ready to do this..