Topic: A BIT OF THIS & THAT

Hi Friends! FYI: I have met a man through the WEB whose wife had CC and he started his own site about her. Susan M Costa.com is where you will see what he is doing. We have been in contact and he asked for Teddy's story to put on his site, did and its done. HI LISA, saw you on there as well! I told him about the letters I collected and he said he wrote (2 years ago) to EVERYONE (in TV land)  he could think of and he did not receive 1 answer!  I am still undecided as to which way to go.  I also wish there was some way we could connect up with him as we are all fighting for the same cause and numbers speak louder.
Teddy is doing very well and we go for the next (ureter) stent exchange Feb 16th with the new Urologist. He is fabulous and it only took 3 minutes to set up the surgery where the old Urologist scheduler took 2 months to set up nothing. Don't you get tired of all the fighting? Well, I just felt like writing a little note today. Oh and I know you saw......CARDINAL'S WON!!!!

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: A BIT OF THIS & THAT

Okay missy....don't tell me you're a Cardinals fan too!!! I was laughing with Lee about how much red was in the stadium yesterday! I also said that I wondered how many people there were really "real" cardinals fans or were there to say they were there....know what I mean?  Anyway...once a Denver Broncos fan, ALWAYS a Broncos fan..even if they TOTALLY STINK!!!  And for all of those tv land people who have done nothing in reply to anyone's suffering PHOOEY ON YOU! 

Smiles always,
Heather

Re: A BIT OF THIS & THAT

AND, even if not a Cardinal's fan you had to LOVE Jordin Sparks singing the National Anthem. If you didn't hear her you can catch it on U Tube.

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.

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OOOOOOHHHH......it truly brought tears to my eyes!  And when they won too....JUST KIDDIN'!

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Love you, Lainy, but I have to believe my daddy in heaven pushed his beloved STEELERS to a win.   Looks like we'll have some fun this Super Bowl!!!

Jolene

"Faith in something greater than ourselves enables us to do what we have said we'll do, to press forward when we are tired or hurt or afraid, to keep going when the challenge seems overwhelming and the course is entirely uncertain."     ~g. b. hinckley

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Thats OK as we had 5 couples here and 3 were Steelers Fans. We are invited however to a Super Bowl party and ALL are Cardinal's Fans. We still have Jordin Sparks although I think Jeniffer Hudson is singing at Super Bowl. Love her too. I bet your daddy was happy yesterday! Wonder what flavored popcorn they have up there!!!! I love cinnamon!

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: A BIT OF THIS & THAT

Just a thought, 

One of the magazines I get (somehow) had an article this month on some rare disease with the promise of another one to follow next month.

I'm either having a blonde or senior moment but I think it's maybe Redbook.  The cover has valentine cakes on it.  I promise to check which one for sure when I get home later tonight from Greensboro.  This might be an option for the letters to be sent to the editor for consideration of an article on CC.

Pam

We are actually getting snow in the South!!!!!!!!!!!!  I love it!

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: A BIT OF THIS & THAT

Pam...blonde or senior moments are o.k.  Just takes some getting used to it. 
When Sara was reporting snow in Houston I asked her whether she is out buying snow boots.  Her response:  Yo can't buy snow boots  in Houston.  So, I assume the same goes for New Bern, North Carolina. 
This reminds me.  I still have a snowball in my freezer from 8 years ago.  Snow in our region of Northern California is rare, also.  As long as we don't have a power failure my youngest son has his treasure well preserved.
Have a wonderful day,
Marion

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

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PAM, what a FANTABULOUS idea. Hot some major magazines!!  Wonderful idea and its a start. I will think on this and see what I come up with. Perhaps a preliminary letter to some biggies to see if they would be interested. See what TV has done. I would not even think of it. Good going. Have all the blonde thoughts you need, they work!

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: A BIT OF THIS & THAT

I'm up here in South Eastern Wisconsin & the rest of you are welcome to all the snow you want. The past 2 years we have had more than we have had in many years.  This season most areas have had between 70 & 80 inches already. You are all welcome to it!  smile

"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.

11 (edited by Cherbourg Wed, 21 Jan 2009 07:28:23)

Re: A BIT OF THIS & THAT

Finally got home last night and the magazine is Family Circle and the article is about a family that lost their 3 year old to a rare form of cancer in under 8 weeks.

The article mentions the foundation the family set up in honor and memory of their son and of CaringBridge which is the blog vehicle many people use.

Hope this is helpful.

Hope all of yall are keeping warm!

Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

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Thanks Pam. And we are keeping warm. Its 79 during the day and 50 at night!
Got to love Phoenix!

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: A BIT OF THIS & THAT

Lainy,

Just wanted to reply to your information about the Susan M. Costa foundation.  We try to get in contact with every one of these causes and we are always looking to see if another one pops up.  You are right, if we all worked together it would be great.  What we have found is that each foundation has a different purpose.  Some of the private foundations are set up simply to help offset medical costs for the family or other private interests.

That is not our goal.  We want to affect treatment world-wide for cholangiocarcinoma patients.  We are working to get the relationships in place with the GI Dr's at major cancer centers across the nation so that we can move forward on the National Database which will help every patient with cholangiocarcinoma.  We also have to have the help of the pharmaceutical companies - so we are working on all fronts.

Doors are opening to us all over.  This has taken some time as we have established a presence at these conferences and met repeatedly with Dr's working on this cancer. 

Sara and Marion just returned from a conference in San Francisco and put together several pieces of this complex puzzle.  Each time we are out at conferences, on conference calls with these Dr's we are moving closer to our goal.

All that being said, we are open and willing to work with anyone who wants to see broad gains in cholangiocarcinoma research.

Thanks so much for keeping your eyes and ears open to what's happening out there, it really helps.

Stacie

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Thanks Stacie, a great explanation that I am sure will also help others on the site to understand that all this work is being done. I guess the nature of the beast is lets get it done yesterday! But realistically we all know its going to take time. You are all doing a wonderful job and we do appreciate all that the Board has accomplished. Thanks again.

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.