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





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

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.

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

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"

-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.

Mumford and Sons 6-12-11 Fox Theatre

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...  

26 going on 96!




I ate 2 dougnuts on my birthday. Haven't since

 

wild man on my bed

So what an exciting week on 8east. We had cards, balloons, signs, and most importantly our dog stoli (wild man).for a birthday blowout.  Margaret's Aunt Jennfier Arnold had brought him up to our room and he was the life of the floor, not saying too much if you see some of these bag-o-bones straggling out of their rooms including myself.

I apprecetiate all of the birthday wishes and I know there are a lot of others places to be or to things to be doing but we are getting cured of cancer which is something not many  people can say they have done. But don't worry Adam hopefully we can go to Six Flags next year.

I finished my 7th bag this morning and this will be our last bag this week. Once again lucky number 7.  It was not an easy week but once again we managed to get through the diaarhea, nauseuesness, lack of showers, and thats just Margarets symptons.

We are still at Emory and waiting while my body gets somewhat back to the norm and hopefully be released sometime tomorrow afternoon. As much as I love the hospital bed and can't wait to get back home.

Only one more round is left!!!! Thanks for the thoughts and prayers, and as Carolina Hernandez says, "congrats Neils body!"

the nurses at 8 East sing Happy Birthday to me... "get out."

DING DING DING Round 3.

 
Monday was my midterm exam, CT of pelvis, abdomen, chest, and neck along with an MRI of the brain. I hate tests and there was no way of cheating on this one, but I got the results from the biggest test of my life on Wednesday and I passed. MRI clear!! CT of chest shows shrinking of tumors!! No new spots!! Amen!! This medicine that I have been cursing while in the hospital is working. I don't like stats because they are usually very skewed, but the percentage of response to IL-2 is 16%. That means if 10 people are recieving this drug only me and some midget out there get the response that you want. (I do pray that I see Mr. White on Monday, we both started IL-2 together, and hope he got good news also). But we are seeing progress and it feels good to catch a break.

So round 3 of 4 is on Monday. Also I will celebrate my 26th birthday on Wednesday in style at the hospital with popsicles and pain pills. Times have changed.

I have to thank everyone for the prayers, inspiration, and motivation this past week the medicine only goes so far we need to give some credit to the Big Guy.