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#49755 03-23-2005 05:29 PM
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minniea Offline OP
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It's getting close to the big day so I wanted to give everyone an update. I know many of you can't make it but you will be there in our minds and in our hearts.
The Walk is on April 9th and will take place at Chesapeake City Park. Registration begins at 8am and walk starts at 9am, ending sometime around 3pm.
We are close to hitting the $10,000 mark if all promises of sponsorship are followed through with and that's not including any money from walkers or product sales the day of the event. Danny, Carol and Bobbi have gotten ALOT of money for our foundation and Brian and I were able to get some of the companies to donate also. Remember that all of you can ask for donations to give to the walk even though you cannot be here.

During the day we will have professors and students from the Virginia Dental School and also the Department Heads of the Eastern Virginia Medical Schools Otolaryngology department doing free Oral Screenings from 9am -3pm.
We will have three cheerleading organizations doing performances throughout the day and also joining in the walk.
We will have Fest Events there to provide food and other good stuff to eat.
We will have speakers that include our own Rosie and the doctor that did my surgery and still manages my care.
We have hired a photographer to do the story in pictures and I meet with him for the first time tomorrow night. He will be there the day of the event to get pics of all of us. We also have a writer from California, April, that is writing the story that will go with the pictures. Brian is going to work his usual magic and try to get some media attention for our efforts.
Danny is our OCF team captain and he and I will be setting a meeting time for Friday within the next few days. I have staff ID and staff Tshirts for all of us that Brian has worked hard getting for us.
I am still working on the radio and news crews. They have this horrible habit of not being dependable and it's been a major effort to get a simple call back. I have faith though that they will come through for us.
We have banners and table banners for the day of the walk, it will be set up very professionaly. We also have specific Tshirts.
I will say that the response from the dental community has been shameful. I sent out hundreds of postcards with all the walk information and I got a total of three phone calls.....it shocked me. I bought a answering machine to handle all the TONS of calls from dental offices that I expected to get. Didn't happen. That has been my biggest dissapointment as I counted on that to be the majority of our walkers.
I am also working on a tribute to our lost members. I contacted as many family members as I could and they have sent me pictures, stories, interesting thing concerning their family member. This will be an uplifting tribute, not something that will be depressing. After all, they are part of the reason we are all doing this walk.
This has been a learning experience but a rewarding one. More then I had anticipated but nothing is worth doing that doesn't challenge us.
I hope all of you can find a way to support the walk.
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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Minnie-
Such a terrific job you have done organizing this event! It is a tribute to your second anniversary! Will be with you in spirit and will send a donation in honor of you and Danny for all your hard work. A toast to a cure! Love - Kris


SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
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Hi all,

I assume that most of those attending this event have already booked their hotel rooms, but in case any of you are even worse procrastinators than me laugh , I have found a great website. www.tripadvisor.com has reviews of hotels written by actual travelers. I searched under Virginia Beach and Chesapeake and was very pleased with all the informative reviews. It definitely helped me to decide which hotel to stay at.

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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Minnie,

You've done a wonderful job and I can't wait to meet everyone that weekend. You know I share your frustration with the dental community, but I do think we've got a couple more practices that will be joining us that day. At least a couple of my calls paid off. Let me know anything else I can do to help.

Barb


SCC tongue, stage I (T1N0M0), partial glossectomy and modified neck dissection 7/1/03
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minniea Offline OP
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Thank you for posting that Rosie. Eileen emailed me asking for advice on a motel room but I hadn't gotten back to her yet. Eileen, please let me know if you need further information.

Bobbi, I hope we do get more dental offices there, it would be awesome. Found out today we will have a dance troupe and a Fraternity from Old Dominion University..........which I'm sure will add some variety, lol.
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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Wow, Minnea, what a great job you have done organizing this walk! Excellent work!


Sister of guy w/base of tongue cancer, Stage IV, Dx 4/03, finished Tx 9/03
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Hi Minnie,
Got the plane tickets, the cat sitter, and the auto, still need h/motel. Couldn't find anything the called "The Sands'. Thinking of staying at the Seahawk that Nicki suggested. Boardwalk and 26th. Do you know anything bad about his place?
Eileen
P.S What type of daytime temps should we expect?


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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Stand Tall Minnie!!!! Your hard work to make this happen is humbling. I am so looking forward to meeting everyone. A small group of people can make a huge difference!!! Ya gotta believe!!!

Any journey no matter how long or hard begins with a first step. I plan on doing alot of stepping at the park!!!

Danny Boy


Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.

Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06

Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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minniea Offline OP
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Hi Eileen,
I haven't been to the Seahawk myself and have no first hand knowledge of it but the reviews look good. I live here but rarely go to the oceanfront. Let me know if you need anymore info!
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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Hi Minnie,
Have you found a place for eveyone to meet on Friday? Some of us are going down early and will not be on the board to get the info if you wait too long. I would like to know what the plans are by this weekend because that is when I pack.

I also need driving directions from VA Beach to the Park. When I tried doing it online, they didn't look correct.

We will be staying at the Seahawk in VA Beach booked under Eileen Jumikis.

Please post meeting place for Friday as soon as possible. Looking forward to seeing everyone.

Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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minniea Offline OP
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Hi Eileen,
I'm not real familiar with the drive from where you are so can't help you with directions. I use mapquest when I travel and it works out great. The park is at 500 Greenbrier Parkway, Chesapeake Virginia.
We will be meeting at the Golden Corral on Friday night and more on that will be posted after I talk to Danny again. This rest. is a buffet style place that will be casual and have food for all of us.
Take care,
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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Eileen,
I just saw that you need directions to the park from the beach. I can give you those when we meet on Friday. The motels are also great about providing directions.
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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Hi, Everyone!
I'm so excited about the walk! And even more excited about the response Tom and I are receiving from friends who supported us during this awful year! Tom wasn't sure how far he could walk, but when a dear friend pledged $25/mi, he said he'd be SURE to do the whole ten miles! smile
I'll be baking more pies and quiches for my co-workers, too! smile Some of them give me $30 as a donation - -- - mmmmmgood!
Love you all,
Nicki
PS Tom had a 'quick' check up with the surgeon today. Uneventful smile and all positive feedback. After sadly reading about Smitty, I am very nervous about waiting until June for a scan. How long is customary before a follow-up scan is done?


Nicki, wife of Thomas
dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
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Nicki,
I'm excited about meeting everyone also.
You know, I have yet to have a PET scan and I have only had one CAT scan since my treatment ended July 10th, 2003. I did have a chest xray in April 2004 but since then that's it. Sometimes I read the boards and am kind of thankful I don't have the PET and other scans every few months as it would make me a nervous wreck!
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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Hi Minnie,

I looked up Golden Corral and there are 3 in Virginia Beach alone. Be sure to give us the town and the address when you post the info. Us 'out of towners' need lots more info to get around.

Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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Hi Eileen,
We will meet at the Golden Corral on Kempsville road on Friday night at 7pm. The motels here are very used to giving directions, in fact will most likely have directions there for any place you want to go. This is a tourist area and everyone needs directions. You will get better directions from them, believe me. I give landmark directions, as my husband calls them, and they only work if you live here and know the landmarks. I'm no good with the "interstate" directions!
Take care,
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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Last chance to donate to a wonderful cause!!!

If anyone can afford to send in a donation to the Oral Cancer Foundation in honer of Minnie Ashworth please do. She has planned and organized the first "Walk for Awareness" on April 9th in Virginia Beach. Any amount sent in helps keep this wonderful site up and running.

You can use your credit card to do this and it is a very secure transaction. This site has helped more people that we can count. We hope to raise enough money to make a difference!!! Small groups of dedicated people can move mountins.

Thanks to all who have donated.

Love to All, Danny Boy


Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.

Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06

Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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If any of you donate, donate it in ALL of our names. This walk is for ALL of us and is a tribute to our collective strength.
My hope is that future walks will be twice the size of our first one and that 10 years from now we will all take pride in the part we played in the movement to lower death rates from oral cancer. My wish is that our esteemed leader, Brian, will still be calling me 20 years from now, pushing and prodding at me to get things done. Not since my husband pushed me to finish nursing school have I had someone support me so strongly in something I wanted to do.
I wish all of you could be there on the 9th but for those that can't make it we will take tons of pictures and make sure you all get some.
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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I want to thank all of you, and especially Minnie, for making this first attempt at an open, public fund-raiser possible. An event that will help the foundation's mission of spreading the word about the disease and early detection, while helping the foundation stay financially alive and viable. As to Minnie's wish about the future.... my wish, is that we are all here 20 years from now, and that we have by then made a major reduction in the death rate from this disease through public awareness, and the spin off of that awareness, finding it early when it is most survivable. This is just a beginning, and I am grateful for the hours and hours of hard work that Minnie and others have done in the service of complete strangers, and for the benefit of future individuals they will never meet. Their giving spirit makes mine soar, and I am humbled at the depth of their commitment to make a difference.


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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Thank you Minnie and Brian for everything you both do! Here's wishing that we are all here 20 years from now!!!God Bless!!Love, Carol


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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I love you guys
xxoo
Nicki


Nicki, wife of Thomas
dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
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Congratulations Minnie and your team of organisers. What you are doing is so positive. I would absolutely LOVE to be there and meet you all but instead will send best wishes and love for a successful day. Helen cool


RHTonsil SCC Stage IV tx completed May 03
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Thank you Brian & Minnie for giving us a chance to help give something back to the Oral Cancer Foundation. It's a fist step in educating people and getting the word out. "EARLY DETECTION SAVES LIVES"
Brian, Me thinks like Rosie, You are to modest!!!
I know I've said it before but I for one am humbled by your committment to the Foundation.

See you next week, Danny Boy


Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.

Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06

Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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Hi Friends,
Well I didn't want to tell you this on a general post but my home computer is so slow I have no other option. Charlie and I have suffered 4 feet of water in our house from the flood on the Delaware. There is no way we are getting on a plane tomorrow and it is extremely doubtful that I can make this at all. Can't get anyone to clean basement that doesn't want to rip the entire finished basement. Gonna hafta do it ourselves.
Will try to post tomorrow and apologize to all who I had hoped to meet. Three days of flood and more rain tomorrow. This really s..ks. and I'm pooped. If I can find a contracter and there is a seat on Friday, I may come down myself but I don't hold much hope for this.

Bushed,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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Oh, Eileen! How miserable for you! I knew you got hit hard with the rain that soaked us for a few days! I'm so sorry you are flooded. Wish we could all get up there to help you bail out!
I'm so disappointed in not being able to meet you, but I'm sure there will be other opportunities. And if you ever find your way to the fair Commonwealth of Virginia, give me a shout.....
Hope you are successful in finding a good and honest contractor!
Love
Nicki


Nicki, wife of Thomas
dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
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Eileen,

I'm sorry to hear you can't come to VA and even sorrier to hear about the 4' of water in your house.
My grandmother's house was flooded in '79 when Hurricance Agnes came through. Her basement was covered and she had 2' feet in her first floor. It was an awful mess. With 4', you have a lot of work in front of you. We will miss you, but understand that you are needed at home.

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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Eileen
So sorry that you look likely to miss the walk, and wish I lived nearer so I could help, 4ft of water sounds pretty devistating to me, have a glass of red wine, girl. If it makes you feel better I've just got the bill for my cell phone during my holiday from hell, for the last 2 weeks it was


SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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Hi Guys,
I am simply not going to make this. Still have no clean up crew so Charlie and I are doing this on our own. Hope to have one tomorrow. Airline wanted $885 to chnage my ticket, I don't think so for a $165 airfare, much less times 2.

Anyway, since I can't be there, I am planning on doing a 'walk in spirit' at the same time you guys are walking in Va. And I think everyone one who can't make it should do the same.

Minnie- can you give us a time when you members will be hitting the track for your survivor lap?
If so please post it, and I think we will all world wide walk with you.

I am going to post this on the general board also, so please update in both places.

Raise a bundle,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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Hello Everyone,
I met Danny and Marcy Bogan today. Within minutes I was so comfortable and at ease with these two people. They have that special quality of making you feel like you have known each other forever. From the moment I read Danny's first post on the board I knew he was special and would have a huge impact on my life. Thank you Danny and Marcy.
Eileen, I am sad to hear about what happened with the house and we will miss seeing you here. I will have Captain Danny of the OCF team gather all of us at 1pm to do our lap. I hope all of you will be thinking of us at that time.
Thinking about everyone,
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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Hi Minnie, Thanks for having the survivor lap at 1:00, I should be there by then!! SMILE!! Love, Carol
p.s. I cannot wait to meet Captain Danny and Marcy. Eileen, I am sorry about your house, oh my gosh, I know how I felt when our basement alone flooded (many, many times) what a mess! Wish I lived closer to help you out!


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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Hi Minnie,
Sorry to miss this. Thanks for the time of the survivor lap. Will be out with my oral cancer cap on and thinking of all of you.

Still no clean up crew because no one will take the job unless I agree to rip out all the knotty pine cabinents and paneling. No heat, washer or dryer. Flood Insurance guy coming tomorrow. Covers absolutely nothing but washer, dryer and heater. I'll need the walk.

Have a great time guys. Wish I were sitting on that balcony in VA beach rather than dealing with this.

Walking with you tomorrow,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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I had dinner tonight with Danny and Marcy Bogan, Tom and Nicki, Rosie and her husband, daughter in law and two beautiful grandchildren, and Barb (bobbi) and her WHOLE family! Barb has her mom, dad, three sisters and two nieces here and together they have raised $15,000 for the walk. That is NOT A TYPO folks..........15 grand for our foundation, how awesome is that? We will break $20,000 and I am so happy. More survivors coming tomorrow and we will be thinking about everyone when we do our lap at 1pm.
OK, here's the big question..........Virginia is bringing in approx. $20,000........who's going to take the challenge to top that and have a walk in their state???
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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Way to go Minnie!!!
I got so excited by your news that I went right to the donation site and fulfilled my pledge to Danny. I decided on the spur of the moment to double it. I am so proud of you folks and what you are doing, words escape me. I wish I could be there with you.
Please accept my donation in your honor as a small token of my admiration.

Thank you for what you all are doing, and thank you Brian for this forum and the OCF's good works.

Good Health,

Chuck Feeney


SCC Stage IV right tonsil T3N3M0. Dx 08/03. Clinical Trial:8 weeks Taxol, Carboplatin then Hydrea, 5FU, IMRT x's 48, SND, Iressa x 2yrs. Now 20 years out and thriving. Dealing with a Prostate cancer diagnosis now. Add a Bladder cancer diagnosis to all the fun.
It's always something
"Adversity doesn't build character, it reveals it."
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Hi Minnie, I totally enjoyed the Walk today, loved meeting you and everyone else. My husband had an idea on the drive home....I am going to the Relay for Life here May 20th, basically I walk the survivors lap and eat the delicious meal they serve. (SMILE) I have emailed my contact person about having an oral cancer booth, where I could distribute pamphlets for the foundation. I was wondering, if they allowed me, what do you think about me selling some of the tee shirts leftover for a small price and passing that money onto OCF? What do you think? Let me know. Love, Carol Thanks again for all you do!


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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Hi everyone this is Amy one of Minnies daughters. I wanted to thank everyone who came out and those who couldn't make it today. Mom put alot of work into this and I am so happy everyone made it so sucessful. A few friends of mine that came were amazed by reading the literature. The education the people who are not close with a survivor recieved will hopefully be passed on. Now lets hit D.C. and work on the insurance companies!
The members of this board have made a huge difference in my mothers life. You have been there for our mother in ways we can not be. My sisters and i appreciate your friendship with our mother very much.
It was a pleasure to meet all of you and I look forward to next years walk!

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Our first Walk for Awareness was a success! There if no final tally as we still have walkers that need to go collect from their sponsors but we made some good money for the foundation. Today Larry and his wife, Cathy, and Carol and her husband (why can't I remember his name!) got here and it was wonderful to meet them. Carol is alot taller then I expected but every bit as wonderful as I imagined. Larry was the down to earth gentleman I thought he would be. Some local survivors that I had not met before also showed up so it was a fulfilling day.
I've never done anything like this before so made lot's of mistakes but now we will know what NOT to do next year.
I hope that each and every one of you will consider doing one of these walks in your state. It's the ONLY way we will make a huge impact on this disease. The board helps people that are battling the disease, learning to live with the disease, lost someone to the disease, etc. We need to use our experience to help others that haven't entered our world yet to either STAY OUT of our world, or to enter it as one of the "luckier" ones with a stage I, easily treated cancer. We need to reach out to the people that don't know anything about our website.
Again, today was a day I will never forget. I was with people that know how I feel, know my darkest fears and inner anxieties, know how my world has changed. That feeling does alot for ones emotional health.
Take care,
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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I love you Amy. Thank you for helping me today and understanding why this walk and these people are so important to me. My cancer had such an impact on your life. Leaving a college you loved so much after being there almost three years was a tough thing to do but you never considered anything different. Coming home here to help me and our family is just what I would expect of someone like you. Remember the night before my last radiation treatment and I was having my "breakdown"? I remember telling you how scared I was of dying and leaving you girls , that I wasn't done yet with all I wanted to do in life. You said it would be fine, I believed you, and here we are two years later. And I'm STILL not done!
Tomorrow we conquer the insurance companies!
Love,
Mom


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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Amy and Minnie,

I know someone who I will read this to tomorrow and your words will help. There is nothing more important than family and it is very appearant that you, Minnie, have instilled that value well in your daughter. Good for you Amy!!

Maybe next year when Harry is back on his feet we can come and walk with you. Of course my back will have to feel better than it does now. Yes, I turned around today and managed to throw my back out. I can barely walk and I am in severe pain but I am still taking care of Harry. He is still having a rough time but I tell him about all you say and it really makes a difference.

I am glad to see that you all got to meet each other face to face and I hope that these meetings continue for years to come!!

Best to you all.
Cindy


Caregiver to ex-husband Harry. Dx 12/10/04 SCC stg 3, BOT with 2 nodes left side. No surg/chemo x4 /rad.x37(rad comp. 03/29/05)Cisplatin/5FU(comp. 05/07/05)-T1N2M0-(cancer free 06/14/05)-(12/10/06) 2 yr. Survivor!!!
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Good morning Minnie,

thanks for putting forth the effort that made for such a fun and successful walkathon. it was a real pleasure to meet you and other OCF'ers. i am always amazed at how much can be learned in a group setting of cancer folks, and yesterday was a great example... various operations and dental proceedures, but above all, the spirit to enjoy life... almost regardless of the circumstances.

it's great to hear Amy talk of next years event! and i agree with you that these activites will help to improve live for oral cancer folks. this really hits home with me as i've been to 2 funerals in 2 weeks for cancer folks from my local support group. it's been about 3 years since i joined that group, of the seven fellows in our original group, i'm the only one left. the photos at the walkathon showed some oral cancer folks that are departed too soon and others that are still with us. thanks for putting the photos on display... as i write this, i remember that i forgot to read some of Heather's journal... well, i should do that next time.

Your efforts and that of the OCF do make a big difference. thanks again. i plan to be at your walk again next year and hope to see lots of OCF folks there.

cu,
larryb

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Hi Minnie,
My husband's name is Steve....SMILE!!!!!I plan on being there next year too. I would like to take on a more active role if you want. God Bless you and your wonderful family. When I got home, I had another check from a sponsor, should I forward it to you or Brian? Ditto what Larry said about the photos on display. Thanks again Minnie, Love, Carol
p.s. I am 5'8" and you were much shorter than I thought you would be, SMILE!!!


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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A HUGE hello to Steve!
Yeah, I'm on the short side, my 12 year old has now passed me. BUT, I am bigger now thanks to my non compliant thyroid!! The extra weight is a huge source of amusement for my kids.
Larry, if you would like and if Rosie wouldn't mind, I can send you the pages from Heather's journal. I agree with you that we all learned alot yesterday and the strength of the will to live was bright even if the weather wasn't. We learned alot from this walk and next years will be even better.
Carol, I think selling the tshirts would be a good idea if you think anyone would buy them. Let me know and I will send you some. Go ahead and send the money you have directly to Brian. Once I get all that I have in some type of excel format that makes sense, I will be passing it all over to him and am hoping that everyone will send directly to Brian from here on out.
So who else is planning on having one??
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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Hello All,

I am sitting in cinn airport paying about $25.00 to post this. My wife and I had a great time and meeting all the members was the highlight of our trip from Wisconsin.
Brian, Remember last Sunday when I told you , "you will be surprised at how much the walk will raise" A few dedicated people can move mountains. Bobbi131 and her family were great fund raisers as well as great people. The people we met by far exceeded our expectations. I will post more when we get home later. I will also be creating a shutterfly album and sending it out.
Minnie, "STAND TALL GIRL" You have a lovely family and Marcee and I will cherish the visit we shared.

Love to All, Danny Boy


Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.

Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06

Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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I wanted to take a minute and say a few words about Rosie, Heather's mother. She, her husband, her daughter in law (a lovely young lady) and her two beautfiul grandchildren, Mikayla and Lawson, drove here to attend the walk. Rosie is the epitome of a mother, a person that was meant to be a caregiver. Losing Heather must have been particularly hard for someone of her personality and nature. Rosie walked and talked and smiled throughout the event, in between making sure everyone was doing ok. Pictures of Heather were there and parts of her journal, things Rosie wanted to share with everyone. Heather continues to touch people and young people at the walk were educated by her story.
Thank you Rosie for sharing Heather with us.
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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Minnie
I don't think you realise how much of yourself you give either, you and Rosie are God's Children here on earth, and I thank God for the chance to know you both...
Sunshine...love and hugs
Helen


SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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I am sorry I did not have a chance to speak with Rosie. I was deeply touched by the pictures of Heather, she was a beautiful young woman, as was Marcy.
Minnie, it was great, thank you for organizing it and I truly hope to be able to do more for oral cancer in the future. Let me know about the stand idea at Relay for Life.
Love, Carol


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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Many many Kudo`s to all of you...what a wonderful bunch of people you are .

Thank You
from all of us xxxxx
Marica


Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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Hey Minnie, just got my response, I can distribute pamphlets for OCF at the Relay for Life, but cannot sell the t-shirts as all monies collected at the Relay must go to ACS.
If it is okay with Rosie, I would like a copy of the pages from Heather's journal. What a beautiful, courageous young woman she was. Her mom is pretty awesome, too!!!
Carol


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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Carol! What a great idea about a booth at the Relay for Life! My company sponsors a team and I'll check to see if I can put up a booth with our information, as well.

Minnie, I don't know if I mentioned this to you at the walk, but your 'memory boards' were incredibly moving, disturbing and scary. Seeing the faces of such beautiful (AND YOUNG) people who lost the joy of living to this ugly cancer brought me to tears - - and really strengthened my resolve to GET THE WORD OUT! Even those that have been with me through this with Tom heard again today about how aggressive and cruel this can be - - and, luckily, I have at least 2 people who have already scheduled their dental appointments WITH the request for a full cancer screening! smile
As I said on the general board, I do feel as if all the OCF angels were cheering us on this weekend. Tom and I will do all we can to let them know they are not forgotten.
Nicki


Nicki, wife of Thomas
dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
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Nicki, Relay for Life said I can have a booth or table and distribute our pamphlets but if I sell anything, the money goes to American Cancer Society rather than Oral Cancer Foundation. I will definitely give out the pamphlets at least.
I so agree with you about Minnie's Memory boards. I cannot get their faces off my mind, it does make me want to fight this all the more!!!
We talked about it on the ride home and Steve came up with the idea of the booth at Relay. I do believe the OCF angels were cheering us on, too!!!!SMILE!!!Carol


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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I just wanted to say how proud I am of my mom, Minnie, for her hard work orgazizing the walk this weekend. It was an amazing experience that touched my heart in a way I can never explain. I realized how precious life is and that it can be taken away in a heartbeat. I met some incredible people this weekend that I hope to see again next year. For the first walk to raise as much money as it did, everyone should be very proud of themselves. From the message board members to the strangers who read about the walk in the paper, I think everyone walked away with something this weekend. (If we could have gotten rid of the wind, it would have been perfect!) Mom, I know you were nervous about this weekend, but I don't think anyone could have done a better job. (Tell em to bring it on if they think they can!) I love you.

**A special hello to Mckayla and Lawson!! You guys were adorable!!

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The boards I put together for the walk were something I went back and forth over. Brian and I talked about it and we both worried that it would put a "sad" feeling on the day. When I started getting pictures and material in the mail from people like Rosie, Michelle (Marcy's sister), Brenda (David's husband), etc., I knew without a doubt that the boards needed to be there. These very people were the whole reason FOR the walk, to raise awareness so that we can cut the number of people that suffer, for example, Heather and Marcy's, fate. The people that have passed are still doing work here on earth by educating others with their stories. It's one thing to hear someones sad story. When we see their faces, read parts of their journals, then we really carry their story with us.
There were alot of children that had an oral screening done at the walk, it was cute to watch. What I kept thinking about was that those kids, for the rest of their lives, would now pay attention to something going on in their mouths. They will also pay attention to their loved ones mouths, tell a friend to go to the doctor if a friend complains about an oral problem, etc.
20 years from now, when we are ALL celebrating so many years of good health, we will pat ourselves on the back for cutting the death rates of this cancer by promoting early detection.


Carol, I think the booth at the relay is an awesome idea. I'm going to find out about that in my area. I can send you everything from the boards I made if you like, I stapled it all on so that it could be removed without damage. You can then mount it on boards or put it in a book if you please. Let me know.

I thought I would be a little relieved when the walk was over, it was nerve wracking worrying if it would be a success or not. Now that it's over I kind of miss the suspense of it all! I spent so much time looking forward to and being excited to meet everyone, I just want to do it all over again. When is our reunion for this year going to be and where???
Love,
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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Minnie,

You can pass the pages of Heather's journal on to anyone who wants to read them. Be advised this is only a select few pages. I did not copy the entire journal. If I ever get my book written, it very well may contain the entire journal. But you will have to pay dearly to read it! LOL! Seriously, I doubt I will ever get it written, but if I would, a nice portion of the proceeds would go to OCF. So I'm sure most of you wouldn't mind paying to read it, right? wink

If the extra shirts can't be sold at the Relay for Life, how about selling them on Ebay or Overstock? There are probably T-shirt collectors out there. I know there are collectors of just about everything else! You could pair each shirt with a pin and state in the auction title that the proceeds go to a charity. That might garner some attention from philanthropists as well as T-shirt enthusiasts.

As long as it would be okay with Brian. I guess we would have to be sure it wouldn't cause any problems for OCF. I don't know what regulations there might be for selling Foundation materials. Just a thought.

Rosie

P.S. I echo the other sentiments about the walk. It was an awesome event, wind and all! For a first time event, I think things went rather well and we are all proud of Minnie and her family for making it happen.


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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