#49755 03-23-2005 05:29 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | OP  Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | 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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#49756 03-24-2005 04:16 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | 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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#49757 03-24-2005 01:21 PM | Joined: Oct 2002 Posts: 546 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2002 Posts: 546 | 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  , 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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#49758 03-24-2005 02:56 PM | Joined: Mar 2004 Posts: 117 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Mar 2004 Posts: 117 | 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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#49759 03-24-2005 06:03 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | 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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#49760 03-26-2005 06:42 AM | Joined: Jun 2004 Posts: 72 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jun 2004 Posts: 72 | 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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#49761 03-26-2005 03:24 PM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | 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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#49762 03-26-2005 04:28 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | 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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#49763 03-26-2005 06:40 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | 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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#49764 03-28-2005 10:32 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | 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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