Plan A, or B, or (you get the idea)

Lots of plans have been made since our appointments yesterday.

Braeden had appointments with both Dr. Fuchs and Dr. Landi.  They both feel that Braeden needs to be fast-tracked for radiation.  At our appointment, we were told that the tumor board would be meeting  at 5pm to come up with a "plan".

The "tumor team" met as planned to discuss his case and Dr L called us last night to give us an update of what the team felt would be best for Braeden.

       

They are going to take what little tissue they have in the freezer from Braeden's surgery and attempt to get pathology in a new way, to see if his tumor would be responsive to chemo.  They are rushing the analysis and hopefully will have an answer soon.  (They think that there is only a 10% chance that his glioma would even be responsive to chemo, but they want to cover all bases.)

If his tumor ends up being the type that is chemo responsive, we would begin chemo and delay the radiation.   I remember last year it took FOREVER for the pathology to come back after surgery.  And we were told at that time, that there was not enough sample to figure out what type of chemo he would need.    I am not hopeful that they will have any results by the time we return next Tuesday.

Braeden started on a taper dose of steroids yesterday to see if that would help alleviate some of his symptoms he is having with his right hand.  Apparently, he is on a high dose, and we can expect side effects that are not ideal.   Hopefully, these side effects will be just a small bump in the road for him.

        

Braeden has been scheduled to see Dr. Larrier who is the Radiation Oncologist on Tuesday the 18th at 9 am, and then the plan is for him to have his simulation appointment that same day at 11.  

      

We are also planning to see OT on Monday the 17th to recheck his strength on his right side.  His results from his appointment on Monday (Grip 25/Pinch 4). His results back in October 2019  (Grip 64/Pinch 10).  Seeing those numbers only reiterates that there is a problem that we need to solve ASAP.  

If Braeden's OT values are worse on Monday, Dr Landi thinks he will likely start an infusion medicine called Avastin, this not a chemo drug, but rather an anti-cancer drug.  Just reading about this drug makes me want to vomit.  I can't even wrap my head around it right now.  The radiation and possibility of  chemo is scary enough.  

That's all I can share as of now.  

There are still lots of unknowns.  Radiation or chemo?  Avastin or not?  

Emotionally, this is difficult, and that is all I can say about that.  

Prayers are appreciated as we try to navigate our newest Duke/Life balance.

#BraedenBrave

#MrUnlucky

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