Community Forums

**NLOVNIT** · 10-15-2011, 07:53 PM

Keep those positive thoughts, they do make a difference. I'm glad to hear you're keeping the Cameo. You guys enjoy it so much & RV-ing will always give you something to look forward to. You both are in my prayers for a favorable outcome.

Lori-

diandtom · 10-15-2011, 09:32 PM

Quote:

Originally Posted by DriVer

That's the best News we've read all day!

Why heck, we might even come up to Camp Neal and camp for a weekend!

We'll bring the camping to you!

He would like that Mike,we did have a rally here a few years ago during MumFest. In fact Tom mentioned today about you and Beau camping up here and coming to visit him,he'd like to see y'all. He will still be in therapy all next week,but they keep him busy until around 4 p.m.,so thats the best time for a visit.

diandtom · 10-15-2011, 09:37 PM

Quote:

Originally Posted by gcsprayjr

Hi Diane, I am new to this forum, and we have not met.

I am a brain tumor survivor for 12 years now. At 43 Y/O I was diagnosed with a very large inoperable brain with significant compression on my brain stem. I was given 60 to 90 days to live. I was a single dad with two kids in high school, a nurse at a busy hospital, and a grad student. The docs at Emory Hospital were going to perform microsurgery, expected to last 14 hours, in an attempt to buy me some time. They knew that they could not remove the whole tumor, but hoped to remove some of it, to reduce the brain stem compression. I refused the surgery, due to the severe level of disability that they expected.

By chance I found the website for the Radiation Oncology Department at Johns Hopkins Hospital in Baltimore. This was 1999, and the then experimental treatment called Fractionated Stereotactic Radiosurgery was in the begining phases. My doctors at Emory were not in favor of this treatment, as they were surgeons, and to a surgeon the only treatment is cold hard steel. Long story short, I ended up in Baltimore. I was the youngest patient, the 62nd patient to have the procedure, and was chosen as the follow-up patient for primary research data for the program.

I had a girfriend, who has now been my wife of 12 years. She and I took our 32 foot Holiday Rambler RV to Baltimore at stayed at the Pataspco State Park. After 31 days of outpatient FSR treatment, I was released to return home. Full rehab would take 6 months.

After two weeks at home I returned to work. I have a 76% reduction in tumor mass and the tumor is still present but dead. I went deaf on the left side, and my balance function ceased to exist. I learned to balance by eyesight, and have returned to normal.

I now work two jobs, as a RN at two busy hospitals. Got to pay off those student loans! I work over 70 hours a week. I function farily normal, and lead a full life, doing pretty much what I want to do. There are things that i can't do anymore, however I am 55 y/o and have had four back fusions, so there are a lot of things that I no longer have the desire to do, so it's all good.

Duke has an FSR program. It was modeled from the initial program from JH Hospital.

You are both in my prayers. Learn all of your options, and take control of your choices. Don't sell the RV, unless you are ready for a new one. If you wish to contact me directly, you may at gcsprayjr@msn.com.

Sorry if there are some misspelled words and some poor grammer. I read your post, and typed this out quickly while on break. I have to get back to work now.

THanks,I love to hear this kind of story,need all the encouragement we can get right now! Tom said when he gets better he wants me to drive the rv around the block,to see how I do. I don't think towing it would be a problem-just the backing up!

gcsprayjr · 10-16-2011, 12:20 AM

Diane, as for driving your rig, I say go for it. It sounds like you have a very nice rig

!

My baby sister, a 51 y/o who happens to be a two time cancer survivor can drive, tow, and back a rig better than most men can. We are big into boating, and she is my boat launching partner. I usually drive the boats and she handles the trucks and trailers

.

Have someone that is familiar with towing an RV show you how to do it, and with a little practice, you will be doing it perfectly in no time

. If you can find a open lot or field, set up to plastic trash cans as markers, and practice backing the trailer between them.

When Tom gets better, it will be great if both of you have good RV driving skills.

**NLOVNIT** · 10-16-2011, 06:36 PM

Quote:

Originally Posted by diandtom

THanks,I love to hear this kind of story,need all the encouragement we can get right now! Tom said when he gets better he wants me to drive the rv around the block,to see how I do. I don't think towing it would be a problem-just the backing up!

Dianne, I've driven every RV combo we've had: TT + Durango, 5-r + Chevy 2500 HD & now the Bounder + Jeep. It's really quite easy, once you get the hang of it, & a bit of a power trip.

If I can do it, I know you can.

I'm not near as good as Dave with backing up, but I can if I have to. For the TT & 5-r, I practiced in an empty shopping center parking lot. You'll be surprised at how the slightest turn of the wheel will send the 5-r off one way or the other. I spent a lot of time "chasing" it when backing before my brain wrapped itself around the fulcrum principle. For the coach, I practiced at a campground we were staying at when one loop was empty.

Lori-

BarbRN · 10-16-2011, 07:03 PM

I'm positive and sending my prayers for your situation. Enjoy life everyday you can. Things always look darkest JUST before dawn.

Hitchhiker · 10-16-2011, 07:15 PM

Diane,

Sylvia and I are so sorry to hear the news about Tom, he will definitely be in our thoughts and prayers. As I sit here tonight I'm reflecting back on many of the camp outs and the Appalachian Campers' rallies that we attended together with you and Tom and all the campfires we sat around. We have many fond memories that will always stay with us.

God bless you and Tom.

diandtom · 10-16-2011, 09:37 PM

Quote:

Originally Posted by Hitchhiker

Diane,

Sylvia and I are so sorry to hear the news about Tom, he will definitely be in our thoughts and prayers. As I sit here tonight I'm reflecting back on many of the camp outs and the Appalachian Campers' rallies that we attended together with you and Tom and all the campfires we sat around. We have many fond memories that will always stay with us.

God bless you and Tom.

Thanks Richard,we have some good memories too,and think fondly of you two. He is doing really well in rehab and we are both anxious to see what course of treatment he needs and get started on it. No one is ever guarenteed a tomorrow so we are making the most of each day as it comes,as I'm sure you are also and we are praying for the best.

Dianne

SkiPat · 10-18-2011, 03:11 PM

Dianne---we have never met but I do want you to know that you both are in our thoughts and prayers.

Park · 10-18-2011, 06:02 PM

Dianne first it was our pleasure to meet both you and Tom at the rally you are both in our thoughts and prayers.

diandtom · 10-18-2011, 08:01 PM

Thanks everyone for the good thoughts and prayers,Tom just flew though rehab. When he checked in last Wednesday afternoon they said he would need 10-12 days,but he is coming home tomorrow,did obstical courses that not many could complete. He will be resting up for whatever we find out at Duke Monday and Tuesday. We left the rv in Durham so a place to stay there and a friend will bring it home for us Wednesday,unless we find out we need to stay there longer.

depchief · 10-18-2011, 08:30 PM

Dianne and Tom our thoughts and prayers are with you both. We will be heading north Thursday for a week. Will call you next week (cell) to check in.
We know your are in good hands at Duke, the treatments today are terrific and they are a leader in the field.

diandtom · 10-18-2011, 09:05 PM

Quote:

Originally Posted by depchief

Dianne and Tom our thoughts and prayers are with you both. We will be heading north Thursday for a week. Will call you next week (cell) to check in.
We know your are in good hands at Duke, the treatments today are terrific and they are a leader in the field.

Thanks Beau,I emailed you our home phone number.

Camping4fun · 10-18-2011, 09:06 PM

Dianne, sorry to hear about Tom but remember we serve a mighty God, never give up hope. Don't tell God How bad his cancer is but tell the cancer how big our God is. My prayers have been sent for both of you two.