June 9, 2022 Update - DAY 36

 Finally, A Ray Of Freakin' Sunshine

Hello and welcome back.

As you can assume my the title, we have been fortunate to have the clouds dissipate to let some sunshine in both literally and figuratively. 

Jackie has had a pretty good week.  Once she started on the IV nutrition, she gained energy and some strength.  The sores in her mouth are pretty much gone, her full body rash is gone and her appetite has returned.  The concern of GVHD in her GI tract (her gut), is still there but we have been seeing some consistent signs that she is slowly improving.  

TMI WARNING!!  READER DISCRETION ADVISED!

As discussed previously, Jackie had a scope last week where they looked inside her GI tract.  Because she has an extensive history of Crohn's Disease, they needed to determine whether or not her nausea, vomiting and diarrhea were caused by the Crohn's or the GVHD.  The biopsies did come back and confirmed that her issues were in indeed the GVHD.  The concern with this was that she was already being treated aggressively with first line medications as she had the GVHD in her skin  and eyes.  This meant that her condition was now refractory or resistant to the first line treatment and moved to another organ in her body.  With open lesions in her entire GI tract including her mouth, eating and absorbing nutrients properly is not possible.  Anything she could eat would not get absorbed and actually create a fluid shift, causing excessive diarrhea and fluid loss.

How's everyone doing?  

I know, I know, again with the anatomy and physiology lessons.  

Now the picture I just painted isn't pretty.  It hit us pretty hard.  If the GVHD is refractory to the second line medications, Jackie's prognosis is not very good.  Despite this, and for those of you who know Jackie, this shouldn't surprise you, the jokes and having fun with the situation continued.  Jackie and some of her care team came up with the "Jackie Poonami Scale (JPS)" that is based on a 1 - 10 rating, but I will spare you the details.

I think the pivot point for her was indeed getting nutrition on board in a way she could absorb nutrients and calories.  Since then, and starting the second line medications, she has been feeling better each day.  Being able to eat food and actually absorb it is a game changer.  They no longer need to use the JPS which is good, but as as her system starts functioning and hopefully returning to normal, she is still trying to understand certain sensations which has led to the game "Russian Poolette".

For anyone who is making a cringe face right now.  Look above, I warned you.

This week was a great week.  Simon, Nate and Katie came down and we were able to break her out for a three hour visit.   The is the first time they saw each other in person in almost seven weeks.  This too was a pivot point.

Now, as previously mentioned, I am not overly superstitious, but I try not to taunt the universe.  Despite that, I am please to say Jackie's doctor has indicated that if this continues, she could be discharged to the apartment by early to mid next week.  So cross your fingers, knock on wood, sacrifice a chicken or what ever it is you do to ward off bad mojo.  My apologies, I have just been told there will be no sacrificing of chickens.  Sorry Colonel Sanders.

Thanks for reading

Mike