Topic: PHOENIX ONC SURGEON CONV

Here is a report of our first day working the CC Foundation Booth. The anticipation we had of meeting Marion did not fall short of the actual meeting. She is as lovely inside as she is outside and this lady is on a MISSION, a mission to see that no one else succumbs to this monster. We definitely have an advocate warrior fighting for us all. I cannot begin to tell you the feelings of meeting someone from our CC family.
The feeling is so strong that I began to think how wonderful it would be for us to all meet one another.
I will report on the general feelings and will leave the scientific stuff to Marion because she is the pro. Believe me, she kept right up with what ever a doctor was talking about, I was just her side kick.
We also met David Windle a wonderful gentleman from Rio Rancho, NM.
Early on, we gave Teddy the job of "reeling" in the doctors so that Marion could do her interviews. Teddy did a great job, as Marion stated several times that they never had so many doctors give business cards and stop and chat like they did today.
We believe we hit the jackpot with some who want to get involved with our Family. This is big, real big. Again I will let Marion explain the medical parts.
This is a huge convention with doctors from all over the world.
One interesting side note is that a few did state that they believed liver flukes in Asia may have played a part in Viet Nam and Korea.  It was conversation but really makes you think even more about that aspect of CC.
On to a shower and bed and to get ready for tomorrow when I hope we have the same success as today.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: PHOENIX ONC SURGEON CONV

Lainy,

Thanks for taking time to report in. It really sounds amazing & exciting.  It does sound like you all are going to be very successful promoting our cause.  I am also envious that you have been able to meet both Marion & David. They both sound like wonderful people, as do you & Teddy.  It would be great if we could all meet one day.

It is interesting that a few are atleast saying liver flukes in Asia could have played a part in Viet Nam & Korea. Even if it was just in conversation.  Every little bit of validation helps.

Have a nice relaxing evening & good luck tomorrow. I look forward to more updates from the convention.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: PHOENIX ONC SURGEON CONV

Hey Lainy...through my tears...I'm asking you because I'm closet to you...that with that spunk, fire and Miracle Man behind you let the world know that we will no longer settle for dire diagnosises...we have all suffered enough...it's damn time we find a cure.

Love,
Heather

Re: PHOENIX ONC SURGEON CONV

Again, GO TEAM CHOLANGIOCARCINOMA!!!

Lainy,
Thanks for the update. It seems like you kept Teddy on his toes and MArion kept you on yours. We all know Marion is our warrior. Unfortunately, it is those family members that have been left behind that are our biggest and loudest soldiers. I am of course including Mark's family and their starting this foundation who have brought us all together to share hope, information, and support. Go TEAM CHOLANGIOCARCINOMA!

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: PHOENIX ONC SURGEON CONV

Thank you for your presence at the convention and for fighting the good fight!  Although we are far from you, in spirit we are right next to you and our prayers are with you.

Re: PHOENIX ONC SURGEON CONV

CONVENTION:  The second day was pretty quiet, perhaps being in Phoenix the Doctors went Golfing? I don't blame them. We did get 2 good contacts one from Sloan Kettering and one from Bangkok! It was pretty interesting and a job well done considering it was only the second booth we have had at a convention.
Again, when Marion catches her breath she will fill you in on the medical details.
It was an honor and a loving task to be able to represent all of you at this convention. One day perhaps we can have our own convention!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: PHOENIX ONC SURGEON CONV

To the Phoenix Team,
Thank you for all that you are doing. I am amazed with everyone's dedication.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: PHOENIX ONC SURGEON CONV

Thanks Lainy, for keeping us up to date and thanks to all of you for being there for all of us. A convention of our one day is something to think about.  Looking forward to hearing from Marion.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: PHOENIX ONC SURGEON CONV

Thanks You All!  Knowledge is strenght. I think I've mentioned that before.  I repeat myself quite a bit lately.  Cheerio for now.
Jeff

Take it to the Limit,One More Time! (Eagles)

10 (edited by marions Mon, 09 Mar 2009 19:24:02)

Re: PHOENIX ONC SURGEON CONV

Hi all.. I am trying to catch my bearings while preparing a more detailed explanations of the last few days.  Lainy, Teddy, and David were an incredible addition in fact; I don't believe that it would have been nearly as successful had it not been for these three wonderful people. 
Lainy with her gracious smile and warm demeanor and incredible spunk is an instant draw. I call her the Mama Bear of the CC Foundation. 
And then there is Teddy, one of the most loveable CC survivors, ever.  Teddy exudes charm and the enthusiasm he displayed when introducing himself on behalf of the Foundation was nothing but superb.  He had long and engaging conversations with many physicians in fact, I don

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: PHOENIX ONC SURGEON CONV

Marion, Lainy, Teddy and David,
 
Thanks to ALL of you for a job well done. All of your hard work is greatly appreciated. It would not have been as successful without every one of you.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: PHOENIX ONC SURGEON CONV

Thank you Marion, David, Lainy and Teddy from the bottom of my heart!  I feel so blessed to have wonderful people such as yourselves so devoted to finding a cure for cc.

Re: PHOENIX ONC SURGEON CONV

A heartfelt thanks to the Founders of this site; the incredibly talented Rick, the unstoppable Stacie, and the invincible Sara.  Countless hours of devotion to this cause have culminated in a cause without borders for all Cholangiocarcinoma patients.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: PHOENIX ONC SURGEON CONV

Reading these posts just warms my heart.  Being part of such an incredible, unstopable group is an honor.  Watching my dad at this very moment suffer a horrific, painful death, is at time too much to bare.  What gets me through is the thought that maybe I could do something to help stop this nightmare cancer from affecting anymore families the way it has affected mine and so many others.  Thanks so much to Marion, Lainy, Teddy, David for all your effort to bring our cause to the forfront, and thanks to Rick, Stacie, and Sara, for giving all of us affected by CC a place to call home.
Barbara

The  Lord is my shephard

Re: PHOENIX ONC SURGEON CONV

I just wanted to show my appreciation for the team at the convention, thank you for all your hard work and effort and raising the profile of this cancer.

Tom

16 (edited by duke0929 Tue, 10 Mar 2009 12:04:46)

Re: PHOENIX ONC SURGEON CONV

thank you all for your hard work, letting the world know about this monster..its time we find a cure ...never give up and never take no an answer...ron

Re: PHOENIX ONC SURGEON CONV

This is our home away from home for all of us affected by CC, isn't it. I too want to thank Rick, Stacie & Sara for creating this wonderful comforting site, where we can all come for help, comfort & support. Words can not begin to express how much it has meant to me to be able to be here, part of a group of wonderful understanding people who know better than any one else on earth how we all are feeling and what we are going through.

THANK YOU!!!!!

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: PHOENIX ONC SURGEON CONV

I have tears running down my face as I read this - thank you all so much for representing all the rest of us, and for your hard work in battling the monster. The thought of what you are doing brings me such hope for the future - hope is a wonderful thing, isn't it?

Joyce C.

Re: PHOENIX ONC SURGEON CONV

Thank you guys so much for being our voice.  You guys are fighting for us and I am so proud of each of you.  I hate it that this awful cancer has brought us together, but I am so thankful for the bond that it has created!  I am looking forward to the day that we will only have "old friends" on this site and no one will have to introduce theirself by saying "I have just been diagnosed with CC."

THANK YOU!!!

Smiles through tears,
Patsy