Molly’s Story

Site created on April 26, 2019

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Newest Update

Journal entry by Kelly Gorczyca

We’re hooome!! This time for good!!  Let me say first the removal of the broviac went super smooth!  Can’t say  the same for the day.  We were scheduled for 2 o’clock which is late considering she can’t eat after midnight the night before.  Now add in a three hour delay!😫.  We didn’t get out of there til 6:00 both tired and very hungry.  First stop- smoothie and food.   
The day before ( Tuesday) was our pre-test day. Both her sonogram and EKG went picture perfect.  The tests were a base line for the medications they are looking at for her maintenance program....this is where my brain starts to hurt so I will tell you the stuff I have digested and like.  
I learned about the test levels we have been sharing with you.  The first results the nurse shared to the one receiving the “fantastic news” and “exclamation marks” now make sense. 
The test results we shared first were the in-house under microscope results and have a 5% possible undetected cell presence  (hence good but not exclamation mark worthy).  The MDR has a 0.01%. Both these tests were clear.  The results showing no FLT3 is another level of certainty there is no cancer since it is only present when the unfriendlies are.  
The last one, which is the one that earned the nurses highest excitement (!!!!! To be exact), was that Molly is 100% Tyler both blood AND bone marrow (though still not biceps  😀💪).  This is not always the case this early on or without the usual tweeking on their part!! 
All Tyler cells means no Molly cells, no Molly cells means best chance for  no unfriendlies!!!! Now we get why the exclamation marks!!  From where I stand Molly crushed it ✔️✔️✔️and✔️ with a big A+ across the board.  
The game plan from here is maintenance and monitoring. AML is just what we call it..unfriendly.  But it is actually the FLT3 that is the reason for this maintenance,  if that was not present initially this would not have been the conversation.   The Midostaurin or the Gillabrand will be to manage any possible hiding FLT3 and she will be on it for up to a year.  
We will have a bone marrow test at 4 mos and then 6 mos as a form of monitoring.  Also more blood work to look for the presence of certain markers that will indicate her immune system is kicking in.  They start looking at 4 mos but typically expect to see it more around 8 mos.   I think that about covers it and should explain why my brain hurts!
Did I mention WE ARE HOME!!!  Now for the moment I have been waiting for ...
LAST night in Philly✔️!!!!  
LPP everyone!!

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