The last quarters numbers are in and they are looking pretty good!
This doesn't refer to the economy nor does it reflect the last 15 minutes of the UGAvBoise game. My CT and MRI took place earlier this week and we like what we see. There is no sign of progression anywhere, and the spots that they believed "might" be cancer are still responding to the medicine and have been shrinking. Hells yea.
As we were anxiously awaiting the scan results, sitting on the toilet paper wrapped table, I was playing with the ear and eye instruments when the nurse walked in. CAUGHT! She didn't care and nonchalantly said scans look good. Not knowing how to react Marge and I just did a quick high-five, and moved on about what's the next move. So in 3 months we will have a PET scan in December and are expecting even better numbers in the last quarter to wrap up 2011. I hope that the economy and UGA football can do the same. We are truly thankful for every one's thoughts and prayers and thankful for the results that we are seeing.
I also wanted to thank everyone for the tremendous response we are already getting for MelaNoMo'! which is on 9-24-11. Our goal of raising $20,000 to go towards research grants and patient advocate programs is in reach. Check out www.firstgiving.com/melanomo.
Go Dawgs this weekend, but more importantly GO AMERICA!!
Thursday, September 8, 2011
Thursday, August 25, 2011
Governor Deal & Gunner Stahl (captain of Iceland hockey Jr. Goodwill Games)
Fá spennt MelaNoMo '! 3 er á einum mánuði frá deginum í dag:
Icelandic for: " Get excited MelaNoMo'! 3 is one month away."
I dropped my american/fijian/icelandic brother Graham off at the airport yesterday so he can begin his next venture obtaining his masters in natural resource management at the University of the Westfjords in Iceland. Graham was with me at work when I got that startling phone call from my dermatologist over 3 years ago and has been with me ever since through our journey. Although he hasn't lived in the US but 3-4 months in the past two years we can definitely feel his thoughts and prayers with us constantly, and know if I ever feel the need to call him to make fun of my parents or some stupid situation we got put in at the doctor he will be there to crack a joke. His optimism of melanoma and of life in general keeps everyone pushing forward in life. He says that cancer will win once you become stagnant you have to continue to live life and moving forward. I wish you the best of luck bro.
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| Veremo, Whytaker, and me @ NSB. |
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| Coach Stansson and team Iceland, prepping for the Ducks & MelaNoMo'! "Fá spennt MelaNoMo '! 3 er á einum mánuði frá deginum í dag" We are excited about MelaNoMo'! and are already have gotten such a great response. First Freddie Freeman now the first family of Georgia are reaching out to create awareness about melanoma. The Governor of our great state of Georgia has taken time from his busy schedule to endorse our fundraiser. These are people that I look up to for not only what they accomplish in the their careers, but also that they know the importance of being proactive about something that your passionate about in order to make a difference. Check out his endorsement letter below. For more information about MelaNoMo'! and how to donate please visit my site, www.firstgiving.com/melanomo. There is a very powerful video titled, "Dear 16 year old me" on the site. |
Tuesday, July 19, 2011
Scan-Day
Scan day was Monday, 7-18. CT of neck, chest, abdomen, and pelvis w/ and w/out contrast and MRI of brain w/ and w/out contrast. This stuff is no fun... but we have handled worse. And we had decided to treat ourselves to a fine dining experience the night after our scans. We were definitely feeling anxious pulling up in that awful parking deck at Emory knowing the tests that were ahead of us, but we got through the day because we knew we were going to be treated at Gainesville's newest fine dining establishments later in the evening.
ALAS...
A night of bottomless salad and bread sticks can't cure cancer, but it came close.
7-19-2011 RESULTS: Everything has either gotten smaller or is stable! This is an answered prayer. There are no new spots and the spots that remain are subcutaneous which means no major organs are involved. We walked away feeling good about our results, we even got some lunch beers to celebrate the good news.
Melanoma is different than any other disease or cancer. People do not go into remission of melanoma they just become NED (no evidence of disease). This is something we have come to terms with and we will continue to LIVE, fight, and manage it and strive for NED. We are currently exploring our options for our next vacation/treatment, because you can't have one with out the other. Options: IPI(first FDA approved drug in over 20 years), clinical trail, waiting a month or so and scan again. We will get another opinion from Moffitt in the days coming and enjoy a few days at the beach.
With that said we are very pleased with the direction we're headed and know that it takes PERSEVERANCE and BALANCE. We have to "keep on keeping on" while maintaining a lifestyle of 26 yr olds. We have felt the thoughts and prayers from LA to St. Simons and everywhere in between. Even the future of the Bravos:
| To Neil Keep Fighting Stay Positive Get Well Soon Freddie Freeman #5 |
Saturday, June 18, 2011
H-O-M-E
Actual footage of going from our hospital room to our car from Emory University Hospital for the last time!! Enjoy!!
http://www.youtube.com/watch?v=1mBmPb5w7ck
http://www.youtube.com/watch?v=1mBmPb5w7ck
Thursday, June 16, 2011
Gonna be a good Year!
After 20 days on 8East, 25 bags of the nasty IL-2, endless side effects, and much time recovering in baths of oatmeal there is a light at the end of the tunnel. It's official I have completed the impossible IL-2 and I'm damn proud!
Even though the clock seems be going backwards we are still counting down the minutes until we are out of here. Things to do to past time, 1. Sleep(I was in so much pain last night asked them to knock me out and they did. Slept from 5 pm to 7 am. 2. Watch movies/tv( our oscar rich library system here we were forced to pick out....Dr Doliitle, Maid in Manhatten, Billy Madison-classic, My BestFreinds Wedding, and the drama Dances With Wolves. And our tv doesn't get sportscenter, but I heard the Mavs won. 3. Walk in circles on our floor pushing my IV pole. 20+ laps equal a mile! Exciting! 4. Eat( no appetite, not happening) 5 read ( no brain, not happening) 6. Internet but looking at facebook creates slight bitterness.
We can bear through this because it's our 4th quarter, finish line is in sight and We are no longer taking IL-2. This week was the toughest yet and although the dr.s prepared us, it hit us hard. After the first bag of IL-2 I hit rock bottom and had they had to skip the next dose until my body fought back and same went for the 3rd and 4th.
So now we wait...tick, tock, tick, tock. We are at the healm of my body and charge nurse. Couple of our other IL-2 inmates will put on their polos tucked in and walk around trying to not to look sick. But they still look like zombies, just dressed better. We just have our bags packed ready for the nod so we don't waste any time in here.
Once we are out of here we do not plan on discussing much about melanoma for a while except for the 3rd annual MelaNoMo'! Tagline"Gonna be a Good Year" on September 24 2011. Website is wwww.firstgiving.com/melanomo( under construction).
Another huge obstacle in life that we got through. Very difficult time testing emotional, physical, and patience limits, but I swear we always got a smile in there somewhere.
I can't say thank you enough for the past 3 months while enduring such a battle, that we came out on top stronger than ever is because of y'all and the big guy.
GONNA BE A GOOD YEAR. 9-24-2011.
Even though the clock seems be going backwards we are still counting down the minutes until we are out of here. Things to do to past time, 1. Sleep(I was in so much pain last night asked them to knock me out and they did. Slept from 5 pm to 7 am. 2. Watch movies/tv( our oscar rich library system here we were forced to pick out....Dr Doliitle, Maid in Manhatten, Billy Madison-classic, My BestFreinds Wedding, and the drama Dances With Wolves. And our tv doesn't get sportscenter, but I heard the Mavs won. 3. Walk in circles on our floor pushing my IV pole. 20+ laps equal a mile! Exciting! 4. Eat( no appetite, not happening) 5 read ( no brain, not happening) 6. Internet but looking at facebook creates slight bitterness.
We can bear through this because it's our 4th quarter, finish line is in sight and We are no longer taking IL-2. This week was the toughest yet and although the dr.s prepared us, it hit us hard. After the first bag of IL-2 I hit rock bottom and had they had to skip the next dose until my body fought back and same went for the 3rd and 4th.
So now we wait...tick, tock, tick, tock. We are at the healm of my body and charge nurse. Couple of our other IL-2 inmates will put on their polos tucked in and walk around trying to not to look sick. But they still look like zombies, just dressed better. We just have our bags packed ready for the nod so we don't waste any time in here.
Once we are out of here we do not plan on discussing much about melanoma for a while except for the 3rd annual MelaNoMo'! Tagline"Gonna be a Good Year" on September 24 2011. Website is wwww.firstgiving.com/melanomo( under construction).
Another huge obstacle in life that we got through. Very difficult time testing emotional, physical, and patience limits, but I swear we always got a smile in there somewhere.
I can't say thank you enough for the past 3 months while enduring such a battle, that we came out on top stronger than ever is because of y'all and the big guy.
GONNA BE A GOOD YEAR. 9-24-2011.
Monday, June 13, 2011
Awake My Soul
"How fickle my heart and how woozy my eyes
I struggle to find any truth in your lies
And now my heart stumbles on things I don't know
This weakness I feel I must finally show
Lend me your hand and we'll conquer them all
But lend me your heart and I'll just let you fall
Lend me your eyes I can change what you see
But your soul you must keep, totally free
I struggle to find any truth in your lies
And now my heart stumbles on things I don't know
This weakness I feel I must finally show
Lend me your hand and we'll conquer them all
But lend me your heart and I'll just let you fall
Lend me your eyes I can change what you see
But your soul you must keep, totally free
In these bodies we will live, in these bodies we will die
Where you invest your love, you invest your life
In these bodies we will live, in these bodies we will die
Where you invest your love, you invest your life
Awake my soul, awake my soul
Awake my soul
You were made to meet your maker
Awake my soul, awake my soul
Awake my soul
You were made to meet your maker
You were made to meet your maker"
Where you invest your love, you invest your life
In these bodies we will live, in these bodies we will die
Where you invest your love, you invest your life
Awake my soul, awake my soul
Awake my soul
You were made to meet your maker
Awake my soul, awake my soul
Awake my soul
You were made to meet your maker
You were made to meet your maker"
-Awake My Soul
Mumford and Sons
Every time we head down to Emory to begin our IL-2 in the morning leaving Gainesville with our cars packed, coffee and the Mumford and Sons CD Sigh No More. It has been our go to music to get us ready for the week ahead. It is an incredible album that mixes folk, bluegrass, rock with incredilble lyrics themed about life, death, religion, love.
Timing is everything; we went and saw them live at the Fox Theatre at a sold out show the night before our last treatment. Margaret, me , Steve-O, TB and about 8,000 others got to see an incredible show last night downtown Atlanta.
So here we are back at Emory for our LAST WEEK of treatment! I am getting my first bag in a few hours and again would like to get that lucky 7, but if I don't who cares I will be finished with this nonsense. I will update later in the week and let everyone know how we are holding up. Keep up the prayers.
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| Mumford and Sons 6-12-11 Fox Theatre |
Monday, June 6, 2011
good things are coming...
We started to believe that bad things happen in 3's and after that you will have a long run of good luck and fortune. To the Gaines family we just can't stay out of the hospital. I got released on May 19 from Emory just a few hours after my dad was admitted to Northeast GA Medical. Turns out mr. active and outdoors (Gary) has a left artery that belongs to Sherman Klump. After chest pain and shortness of breath he went to have tests done and was sent straight to the OR to have emergency triple bypass surgery. He has recovered great and will now outlive us all. Has a great heart, as we all know, and will be back on the river or the trail soon. Friday June 3 my grandmother Ganny had successful surgery to remove part of a cancerous tumor in her lungs. The surgery went great and she is at the Northeast GA Med. and needs everyones thoughts and prayers for her recovery. She is the definition of a sweet southern grandmother. Soon enough she will be back to making her homemade biscuits, slipping her grand kids money, hard candy, and double mint gum. Like I said bad things come in 3's but good things are coming....
| Ganny w/ Papa Lou at her 79th Bday fiesta |
| Gary on annual backpack/fishing trip |
I did not get much recovery time and was at work the Monday after treatment and had a busy week at work while the boss was at home recovering. So Margaret and I decided that we could use a vacay for the long memorial day weekend and made a trip down to Amelia Islands and stayed at my aunt n uncles in Fernandina Beach, FL. Reading on the beach and bike riding through town for some seafood and coronas was just what we needed.
This weekend we attended the Hall County Relay for Life. Margaret, Graham, and I along with 16,000 others attended Lanier Motor Speedway. We were a part of "The GI Squad" which was Margaret's team from work. I walked the survivor lap and was joined by my wife and brother for the caregiver lap. Over $350,000 was raised for the American Cancer Society. Hopefully not all of that will go to breast cancer and melanoma can get a little slice of it.
Stay tuned for my next update to come from Emory while receiving my last round of treatment. I report to duty on June 13th and remember the rule of 3's, good things are coming...
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