September 29, 2008 at 2:56 am #23038jeffgMember
Stacie and Marion
I wish I could have been there. I just want to echo everyone else, what else can you say; Only that your passion and love for others shines so brightly! I wish I could have been there and met that amazing person. Like I said somewhere else, Cholangiocarcinoma will not be kept hidden any longer.
God Bless You Both!
JeffSeptember 27, 2008 at 3:27 am #23037barbara6193Participant
Thank you Marion and Stacie for all you do. I appreciate all of your efforts and I support you wholeheartedly. Maybe one day I will be able to assist you more than I am now. I continue to have a difficult time dealing with the loss of my Jacques, it seems to be getting harder each day. On a positive note, on September 23rd, in Boston, I met an amazing “Face of Cholangiocarcinoma”, it was a bittersweet meeting, but there was an instant connection. We are all connected and we only are aware of this through this wonderful web site.
Thanks for all you do – I only hope that one day – families will not have to endure what we have gone through – I truly believe one day our voices will be heard.September 26, 2008 at 5:02 pm #23036stacieMember
Good report Marion. The next newsletter will have a full report of all the conferences that the foundation attended this year and the schedule for next year.
Also, wanted to add that I spoke at length with the Cyberknife people who were at the conference as well, in two weeks they will have a fully interactive website for patients, so that you can get all your questions answered and see how the cyberknife works right from your home.
It seems so silly to me, that this kind of thing brings tears to my eyes, but I remember when Mark was sick and I felt like my life was running on adrenaline, we had heard about photodynamic therapy and what a revolution it was. I was very excited about it. I spoke to several physicians about Mark’s case, I spent a lot of time searching the web but the information was not complete. I was reading articles and research, etc. to find out if Mark would be a candidate for this procedure, for some reason I just couldn’t pin anyone down, every physician wanted to see him before they would tell me if he was a candidate for the procedure. It was so frustrating. Finally, I spoke with one Dr. who said to me, “You said your brother has intrahepatic cholangiocarinoma, well photodynamic therapy only works for patients with extrahepatic.” All this research and time spent, when I really just needed a straight answer. 3 years later, things are so different. I feel so grateful that these companies are putting all of the information out there and that we can get it all compiled here on the website so that you don’t have to waste any precious time.
Cyberknife asked us to please make sure their link would be on our website – like they had to askSeptember 26, 2008 at 4:22 pm #23035
Kris….there is no stopping us ….we are not going away. And don’t forget: the most wonderful people are on this site. This is what makes the Foundation each and everyone of you, included.
Love to allSeptember 26, 2008 at 4:44 am #23034devoncatParticipant
Thanks for all your hard work marion and stacie. I cannot believe how fast everything has come together with this organisation. If you think where it has come in 2 years, it is very exciting to think where we will be in 2 more.
KrisSeptember 25, 2008 at 11:21 pm #23033
Thanks Lainy….there might very well be something in your neighborhood. Will be great to meet you, personally.September 25, 2008 at 11:12 pm #23032lainyParticipant
Thanks for the wonderful update, Marion. I look forward to taking a peek at your 2009 schedule.September 25, 2008 at 10:48 pm #1586
I am following Stacie in reporting about our presence at this conference.
ASTRO has created the Patient Causeway to better integrate patient advocacy organizations such as ours into the Annual Meeting. Patient support groups are an invaluable resource for cancer patients and their families as they help provide counseling and treatment information for those grappling with diagnoses of cancer. The goal of the Patient Causeway is to provide a forum for patent advocacy organizations to interact with members of the (in this case) radiation oncology treatment team to find areas of improved collaboration. We were fortunate to be a recipient of the generosity of the ASTRO Association and in particular, are grateful to Beth for making this happen for us.
Here we were: Our very own booth and handing out our very first brochures. I have to admit to having tears in my eyes, as did Stacie.
A physician from Vanderbilt-Ingram Cancer Center, Nashville, Tenn. stopped by our booth expressing his delight in having our Foundation present at this symposium. He was a presenter at the
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