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Joined: Aug 2006
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Me2 Offline
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I am really confused by this whole thing. Does our donation only count if it's done through a badge? When I saw the first post, I went to the site and donated to the OCF, through the Network for Good, America's Giving Challenge link. Does that mean my contribution doesn't count?


Ginny M. SCC of Left lateral tongue Dx 04/06,Surgery MDACC 05/11/06: Partial glossectomy with selective neck dissection. T1N0M0 - no radiation. Phase III clinical trial ("EPOC" trial)04/07 thru 04/08 because tests showed a 65% chance of recurrence. 10 Year Survivor!
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rosie Offline OP
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Ginny,

I am sorry and I apologize again. When I first read about this and saw that there were only 11 days left, I jumped the gun and rushed here to post it on the forum without reading all the instructions.
I actually fully expected that someone else here would already have started an effort, and I wanted to bring everyone's attention to the fact that if they hadn't donated yet, they only had 11 days left to do so.

Anyway, no, your donation through the first link doesn't count toward the $50,000. It does, however, go to OCF and I thought that it counted toward the lesser prizes of $1,000, but I'm not sure about that now.

Again, I am so, so sorry that I messed this up. I thought that I had corrected it in time that only a few people had donated through the wrong link. I sincerely hope that not too many did.

Rosie


Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
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Rosie,
Just made my 2nd donation. My first was before you had your badge. Sure hope it also counts.
Linda


Husband diagnosed 2/9/05 SCC Larynx (piriform sinus)Stage IV,T4,N1,MO
cisplatin/5FU 3/21-3/25 & 4/11-4/15, began 39 rad 4/21/05 last rad 6/17/05, mrnd 10/7/05
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Me2 Offline
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Rosie -not your fault, I think the website is VERY confusing in itself... I also did not figure out the badge thing until you wrote about it here....


Ginny M. SCC of Left lateral tongue Dx 04/06,Surgery MDACC 05/11/06: Partial glossectomy with selective neck dissection. T1N0M0 - no radiation. Phase III clinical trial ("EPOC" trial)04/07 thru 04/08 because tests showed a 65% chance of recurrence. 10 Year Survivor!
Joined: Oct 2002
Posts: 546
rosie Offline OP
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Just kicking this to the top.

And one suggestion. If you want to give more than $10, how about splitting it between 2 or more people? For example, I did the same thing David did. Gave once in my name, then set up a user name and password for my husband and gave $10 in his name.

I plan to do the same thing for my son. He doesn't have a credit card or PayPal account, so I will use my third email address to set him up for a $10 donation and will use one of my credit cards. That makes 3 separate donations. Remember, it is not the size of the donation. It is the total number of different people who donate that counts.

I plan to do the same thing for my mom. She'll give me the cash and I will set her up with a separate user name and use my card to pay. I'll have to open another yahoo email account first, though. As David said, I think the email address is how they determine it is a different person.

C'mon everyone, jump on the bandwagon this weekend. Let's get those numbers up!!!


Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
Joined: Oct 2002
Posts: 546
rosie Offline OP
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Well,

I'm a really lousy cheerleader - there were 2 new donations in the last 2 1/2 days. Only 2.

I think I'll go crawl in a hole somewhere and leave you all alone now.


Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
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It was a noble try Rosie.... welcome to my world.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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rosie Offline OP
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Brian,

You are a much better person than I. I would have given up long ago. I commend you for your perseverance, dedication and sincere desire to help people.

I know there are many here who do appreciate you and your efforts, but the majority of these people just don't know how fortunate they are to have you. If, and I'm sure you know it is a big if, I ever finish that darn book, and if I'm fortunate enough to actually sell any, you know OCF will be given a percentage of any profits. At this point, however, the profits will not be given with any desire to help people in general, they will be given to help you, because I still believe in you, although I have just about lost what little faith I had left in people in general.

I know one person can't do much, but I will continue to donate at least once or twice a year. I will continue to go through this site every time I buy from Amazon.com. I might buy a T-shirt from time to time and will probably get brochures to place in medical/dental offices occasionally. And I have named OCF in my will. Not for a huge amount, as I do still have 2 children, 3 grandchildren and a husband to think about, but OCF is named for a modest amount. Of course, that is one amount I hope you don't get for a few years yet. wink

I just find it incomprehensible that the survivors aren't more grateful and willing to help. For those of you who don't know me, my daughter did not survive. She has been gone for more than 4 years now, but I will never forget the help we received from this web site. The site in general, and the forum in particular, were my lifeline. I could not imagine going through what we did without the information and support that we received here.

I remember when the mucous was so thick that Heather couldn't lay down and sleep for fear of choking. Joanna gave us the tip about putting rolls of gauze in her mouth to soak up some of the gunk. Gary and some others had great advice on how to get the constipation under control. Nettie Poho from Ohio (I think that was her screen name) reassured us when Heather developed the fistula. Someone else had invaluable advice on keeping the PICC line rinsed thoroughly to prevent clogging. And the person who recommended the portable suction machine was a godsend. We used the heck out of that machine. When I speculated that we had made a mistake by not going to a major cancer center, thinking that concurrent chemo and RAD would have been a better treatment option, Glenn from New York (also now gone) assured me that Memorial Sloan Kettering was not offering a chemo/RAD regimen at that time, which eased my guilt quite a bit. The list goes on and on.

I don't visit the forum much anymore, because quite frankly, it is painful. It is not only painful to read about those who are suffering, because it brings back vivid memories of Heather's suffering, and painful to read about another person being lost to this disease, but it is also painful to read about those who have survived, because I then question why. Why have you people survived, when my daughter didn't? And then, to know that you have survived, and supposedly benefited from the support found here (otherwise, why would you still be coming to this site), but realizing that you don't even appreciate the help you have received enough to cough up a measly $10. $10 stinking dollars.

It is now and will always be incomprehensible to me how people can be that way. And I know I am coming across as a pompous ass. And I am not usually that way. I am the type of person who gives everyone the benefit of the doubt. I believe in second chances. I believe in the basic goodness of human beings. I am generally the last person to condemn someone for his/her actions. I'm the one saying "Wait, let's hear both sides of the story. Give the person a chance. There's a bit of good in everyone. etc, etc, etc."
But I am having a real hard time doing that now. I just can't believe that the majority of you can't scrape up $10. Do you have any idea what $50,000 would mean to OCF?!? Obviously not. You must think it only takes pennies to run a website, pennies to print thousands of brochures, pennies to educate dentists, pennies, pennies, pennies. Well, I for one, don't believe any of you are that naive. And if you're not naive, well, at the very least, you are ungrateful, and I can't print the rest of what I think.

I apologize to the people who donated through the first link. I know there were a few of you, and I'm sorry your donation didn't count toward the $50,000 prize, but given the minimal participation, I guess it really didn't matter much. At least OCF does get the money that you donated.

I'm done ranting for now. But I'm glad I got that out of my system. Now, you all just chew on everything I said for awhile, and if any of you have a conscience, go make that donation. You have until Jan 31st @ 3 PM. We don't have a snowball's chance in hell of getting the top prize, but there are still the $1,000 prizes to try for.


Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
Joined: Nov 2007
Posts: 681
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Rosie,
"Words from the heart enter the heart." Your posting should certainly inspire others to contribute, if not to this campaign then to OCF in the future.
Please do not blame yourself or anyone else for the slow response to this appeal. I have been involved in fundraising and have found that how others respond can be surprising. Not everyone is fast to answer an appeal. Perhaps some here are waiting for the next check or have not had time to analyze their accounts. Also, this is a very short term appeal. Perhaps others have also made provisions for OCF in their wills and consider that their contribution.
One day last year I picked up 2 grandchildren from school. They had just received information about a read-a-thon to raise money to get books for the school library. This was also a matching type campaign as the money raised bought books at a much less than wholesale cost. My 11 year old grandaughter asked for my cell phone and was calling family members and friends as soon as she got in the car. She asked for pledges for herself and for her brother. Between calls she said to me, "It's not like I'm asking for myself, the school needs the books."

When I gave the information to a friend who is a social worker in an agency she thanked me and said she would pass it around at work.

Malka

PS: I have added the link to my signature.


SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
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Rosie, as long as you can say I gave it my best shot. Not much more a person can do. We know you did your best and luv ya for it.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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