Author Topic: A open letter to the ANA - with much gratitude!  (Read 3808 times)

ppearl214

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A open letter to the ANA - with much gratitude!
« on: April 13, 2006, 04:14:39 pm »
To all those that help run the ANA, the webmasters/Forum admins, to all those here that utilize this site:

On behalf of my family (yes, even PapaPearl), Iain, Beanie, Kate, my friends and all, please accept my extremely humbled gratitude for ALL you do, the support you show and for the genuine, caring hearts you all have.

I started this AN journey almost one year ago, where my AN was stumbled upon during testing for other reasons.  As many of you know, I lost a sister to a malignant brain tumor, so the sudden shock of my diagnosis was a swift kick in my teeth, to me and me family.  I have learned to be proactive in my health care, to be as much of a "fully informed" patient as I can be.  I stumbled onto the ANA website and called the Atlanta office.  Info was sent via post to me, I read the forum boards and learned... and learned as much as I could.  During this self-education process, I was exceptionally blessed to become friends... no, family... with many of you here. Your generousity, outpouring of support during a difficult time in my life, calls, gifts, but most of all... genuine, unconditional love, that you all have shared with me, has floored me.

In the past months, I have tried to take the opportunity to get you know as many of you as I can.  Leading up to my treatment last week, I honestly don't know what I would have done without you... saying "thank you"  just doesn't seem like enough.

In the past months, I have tried to share a little piece of me and my world (ie: PapaPearl, Iain, Beanie, Kate, etc) with you... and in return, you opened up your worlds to me... and I thank you.

In closing, I just want to thank the ANA for their continued support for all of us that are affected by AN's.  Please know you have my continued/endless support.

...and to those of you that have touched my world in an overwhelming way.....please know that from the bottom of my heart, my respect, admiration and support regardless of where you are and what is occuring in your life... that not only do I remain as dedicated to you as you are to me, but you have my undying love.

Humbled.

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Gennysmom

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Re: A open letter to the ANA - with much gratitude!
« Reply #1 on: April 13, 2006, 04:23:10 pm »
AAAWWWWWWWWW Pearly,  :-* :-* :-* :-* :-* :-* :-* :-* :-* :-* :-* :-*

We loves ya!  Yes, your dad can adopt me, and all of you can be the sisters and brothers I never had...I'm an only child, small family, so big AN family is GOOD!!!!!!!!!!

You're the best!!!
3.1cm x 2.0cm x 2.1cm rt AN Translab 7/5/06
CSF leak 7/17/06 fixed by 8 day lumbar drain
Dr. Backous, Virgina Mason Seattle
12/26/07 started wearing TransEar

Desilu

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Re: A open letter to the ANA - with much gratitude!
« Reply #2 on: April 13, 2006, 04:24:01 pm »
Dear Phyl,

That's why all of us are on this web site. To help one another and to pass on our knowledge to others who are just beginning their journey. I feel it is an honor to be able to help someone in any way, whether small or large. We must keep up the good work and continue to support one another. Thank you for the beautiful letter.  Ann
HEI July 26, 2005
5mm X 8mm Left AN
Middle Fossa
Dr. Brackmann & Dr. Hitselberger

ppearl214

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Re: A open letter to the ANA - with much gratitude!
« Reply #3 on: April 13, 2006, 04:27:31 pm »
no, thank YOU!

FYI, I advised the ANA of this thread in hopes that they see it.... :)

xoxo
P
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Captain Deb

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Re: A open letter to the ANA - with much gratitude!
« Reply #4 on: April 13, 2006, 06:29:24 pm »
I'm grateful to the ANA, too....where would any of us be without all the information on their site, not to mention giving us this amazing way to communicate with each other, share information, vent, play, laugh and cry.  Thanks ANA!! keep up this miraculous and much appreciated great work.

Captain Deb 8)
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Battyp

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Re: A open letter to the ANA - with much gratitude!
« Reply #5 on: April 13, 2006, 09:03:37 pm »
awww Capt Deb..Phyl made me cry.... :'( :'( :'( :'( :'( :'(

Deb I have sisters and I'd trade in anyone of them to be sisters with Phyl or matti, or nan or you or karla or kathleen or...the list is endless!

I don't know where I'd be without this board!  Especially with no support near by.

thecakes

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Re: A open letter to the ANA - with much gratitude!
« Reply #6 on: April 14, 2006, 06:18:00 am »
   I have to say I am very greatful for this web sight too.  I have never yet met anoughter AN'er other than at a convention that I went to once in Dayton, Ohio a few years ago.  Before I discovered this web I was on the brain tumor web, and thats mainly cancer.  While reading these post I always think how different this is from the cancer web sight.  How much more lively and fun this sight is compared to the poor people on the cancer web.  There is supposed to be another older man in town with an AN but I don't know him.   I speak with his daughter and she says he just has a mild hearing loss and there not going to operate because he's 80.  Its nice on here because we can all wine, and we're winning about the same  things, we can relate.....We're all head cases.

Battyp

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Re: A open letter to the ANA - with much gratitude!
« Reply #7 on: April 14, 2006, 10:37:03 pm »
Hey Phyl and Deb..cakes called you guys a head case!  I know she's  not talking about me... ;D ;D ;D ;D :-* :-* :-*

Larry

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Re: A open letter to the ANA - with much gratitude!
« Reply #8 on: April 16, 2006, 03:02:52 am »
Agree Batty, I'll send those men in white coats to Phyl as well, although, I think she's beyond that!!!!!

Great letter by the way Phyl. My sentiments exactly.

Laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

ppearl214

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Re: A open letter to the ANA - with much gratitude!
« Reply #9 on: April 16, 2006, 08:56:39 am »
white makes me look sickly... I'd rather chooose purple, thankyouverymuch!


...and thanks Laz... I meant every word I wrote! :)
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

ppearl214

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Re: A open letter to the ANA - with much gratitude!
« Reply #10 on: April 19, 2006, 01:24:05 pm »
*hip check bump for the ANA!* :)
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Battyp

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Re: A open letter to the ANA - with much gratitude!
« Reply #11 on: April 19, 2006, 01:46:15 pm »
purple it is...do you want plum purple or lavendar purple?

ppearl214

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Re: A open letter to the ANA - with much gratitude!
« Reply #12 on: April 21, 2006, 05:38:11 am »
FYI, I received a private email from the ANA and their appreciation of the kinds words shared here. Just wanted you all to know. :)

P
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Larry

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Re: A open letter to the ANA - with much gratitude!
« Reply #13 on: April 21, 2006, 07:53:01 am »
Way to go girly
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz