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My Dearest Trey...


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#1 rct

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Posted 27 November 2012 - 03:25 PM

I tried to do this privately, but I don't get how these kidz use this innernetz today.

Few years ago, three and a few months to be close to exact, we were visited by a young lady that we, primarily you and I, had some pretty tough words with.  She had been diagnosed with some weirdness, was looking here for "advice", didn't really get what she was looking for, and took you out back for a good flogging because of your medical wisdom being not from an actual real doctor.  I got into it with her about how tough this stuff really is, hang in there and let the docs do what they do, they'll have to take time to figure it all out, but what you report isn't consistent with the things we are dealing with here, in this forum.  She impolitely informed me that the crack team of the worlds greatest doctors, assembled by her father, were on the case, and they would correct this apparent mistake in no time.  That version of this forum quickly deleted all the posts, and I don't believe she was a member here anymore.

I followed her from time to time on CaringBridge as she tried to figure out what it was, hoping it would turn out CML and she'd be back and we could all koombyeyah and all that.  That didn't work out.

She ended up with some bad MDS, some pretty intense leukemia, a multitude of blood problems.  Went through a lot trying to get it chemo'd and doped into control.  A really really lot.  Ended up in transplant in summer of 2010.  That went very well.

Summer of this year, 2nd anniversary, some liver values not good.  Not worrisome, but not great.

Suffice it to say, gvh of the liver brought some other problems along.  Last month or so it got really bad, I communicated a bit with her or her family.  I am sad to say she left the building last night, but man, she gave it heck right up to the last hours.

So whomever is having a glass of wine tonight, or a coffee or tea, lift it to Jacqui K. B.  She was one of you(us), but she didn't really know it.  Once she became aware that she actually was, she couldn't come back.  In the interim, atonement was made for whatever happened here, with whomever, I took it upon myself to make apologies all around, and she understood.

I apologize for the publicness of this, though others may have known of her as well.  I am very, very sad and sorrowed at this.  I wish more than anything it had been different.

rct

Message was edited by: Abena



#2 Sneezy12

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Posted 27 November 2012 - 05:12 PM

And so do I. Frank



#3 CMLSurvivor

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Posted 27 November 2012 - 07:32 PM

So sorry to hear about the loss. I am sure God has opened his arms and welcomed her to heaven.  We all wish we can help and fix everyone but like Trey says time and time again, we are not doctors here, and people really need to go see their doctors for professional advise. This forum is for us to vent, complain and share our experiences with CML so we don't feel we  are alone in what we are experiencing. All we can do is listen with an open heart and try to calm fears when needed. I pray for  us all and that someday they find a SAFE cure for us all.



#4 Trey

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Posted 27 November 2012 - 09:59 PM

Thanks.  Sorry to hear the news about her.

I only recall that  her docs were giving her bad info.  But I understood her reaction to me pointing that out. 



#5 Ludwigh

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Posted 28 November 2012 - 02:02 AM

I remember you Jacqui,

Sleep in peace brave warrior.



#6 hannibellemo

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Posted 28 November 2012 - 06:02 AM

I, also, remember her. RIP. Thanks, RCT, for telling us and for trying to make things right,

Hope all is well with you and, of course, your wife. i know she has struggled so with the beast.

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#7 Calalily

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Posted 28 November 2012 - 07:01 AM

Rest in peace Jacqui x



#8 PhilB

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Posted 28 November 2012 - 01:59 PM

Thanks for letting us know the sad news.  I too remember her - it was actually after we had already moved to this version of the forum and the first portion of the thread (before it turned nasty) is still available.  I will turn over a glass for her tonight in memory of the beautiful girl in her wedding dress from her profile.  RIP






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