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diandtom · 10-14-2011, 07:15 AM

I know many have read about Tom under the "Home again,home again" post under the National rally,but for those that have missed it I will try to fill everyone in on whats going on in our life. The week before the national rally we found out Tom had a brain tumor. His dr. said the man that read the MRI was really good at his job,the tumor was in the front lob,the best place to have a tumor if you had one,it was golf ball size,probably benign,and slow growing. We were told we could go to the rally as that type of tumor didn't have any side effects and Tom had probably had it for some time. Tom wanted to go,had been looking forward to it,but with this hanging over us,it was hard to put on a "happy face". After we left the rally,we went to Mayberry campground in Mt Airy to see some friends,relatives and to go to church where Tom was brougth up and is still a member. We then went to a campground in Durham,not the greatest place but the only one there and near Duke. We saw Dr Friedman,a world reknown brain tumor surgeon on Tuesday,as soon as he looked at the MRI disc we took in he told us it was maglinant and they scheduled surgery for that Friday. Another rug pulled out from under us,knew it had to be bad to get in so soon. Surgery lasted 4 hours and it seems nothing we heard at home was correct. The tumor was in the temple area,was larger than expected,fast growing,aggressive and pressed against the brain stem,they got most of it but couldn't get that pressed against the stem. He has limited vision in his left eye and weakness on that side. He was released from Duke Tuesday and I was able to bring him home for his rehab which will last from 10 to 12 days. We will then go back to Duke to the oncology dept. to set up the best treatment for this kind of cancer,which is a grade 4 and the worse kind. I did find a website last night with stories of surviviors some as long as 20 years,but this is not the norm. Tom is very strong,has a good attitude and is working very hard at his therapy. As soon as we get the rv back from Durham he wants me to put it up for sale,this is such a sad thing to do as we loved to camp and considered many of our rv friends as extended family. Please send good thoughts and prayers for us both.

Dianne

bsirby · 10-14-2011, 09:12 AM

Diane, I will continue praying for Tom, and you as well. He is in good hands at Duke. My son-in-law was treated for his cancer there. Keep positive thoughts and know you have alot of people praying and supporting you.

Roam America · 10-14-2011, 09:28 AM

Diane

A positive attitude is a large part of the treatment plan. Both of you are in our prayers and thoughts for a positive outcome.

Ronnie Bledsoe 2006 Dutchstar 43' · 10-14-2011, 09:39 AM

Thoughts and prayers for you all. Try not to make hasty decisions. Medical miracles are the norm these days. Camping and being out can be good medicine,

hondo122 · 10-14-2011, 10:15 AM

Prayers can truly work miracles, a couple of weeks ago I asked for prayers for a close friend who had an aneurism and was in a coma. Imagine my joy when I went to see him expecting the worse only to find him sitting in his bed talking to his wife. Prayers from Peg and I are on the way. Keep the faith and hope alive.

sdennislee · 10-14-2011, 10:45 AM

Be positive, you have our prayers

beachboy27 · 10-14-2011, 08:15 PM

You are in my thoughts and prayers. Keep the faith.

diandtom · 10-15-2011, 06:59 AM

I got a late night call from Tom last night,said he been doing some serious thinking,so was afraid about what. But, he decided we aren't going to sell the rv yet,said we may take shorter,closer to home trips but wasn't ready to give up camping yet-love his positive attitude!!

Steve N Sal · 10-15-2011, 07:03 AM

You are in our thoughts and prayers. Stay positive.

doc · 10-15-2011, 09:13 AM

Thank you for the update Diane. Tell him to hang in there and be tough. My kids have never met him, yet when we told them what had happened and was going on they became concerned and said our entire family will send prayers. Hope the chemo and radiation helps. I expect you cannot find a better place to be treated than Duke. One of my friends who is a cardiac surgeon graduatated from medical school there and says it it indeed the best place to be if one is sick. I put a lot of faith in what he says. Love you guys and are praying for the best.

DriVer · 10-15-2011, 09:33 AM

Quote:

Originally Posted by diandtom

I got a late night call from Tom last night,said he been doing some serious thinking,so was afraid about what. But, he decided we aren't going to sell the rv yet,said we may take shorter,closer to home trips but wasn't ready to give up camping yet-love his positive attitude!!

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!

Midnite-CTD · 10-15-2011, 11:52 AM

I don't know you, but I have found that the people here are some of the best kind, and my heart goes out to you both. Like others have said, positive thoughts and attitude along with the prayers of friends and family go a long way!

I have a very close Uncle who was found to have six large, fast growing tumors in his head. He was given less than a month. But he is stubborn as all hell, and wasn't ready to give up camping with friends and family, something they lived for. So he battled through with nothing but optimism. My Aunt learned to drive the coach, and as soon as she got used to it, she upgraded to one twice the length, just so he could be comfortable for however long he had left while doing what he loved...

That was a little over four years ago! Today, four of the tumors have shrunk to nearly nothing, and the other two have shrunk to where they really don't affect him much, other than a temporary and sporatic short term memory problem, and she still has to drive. The medical community, for the most part, has no answers as to why he has done so well. All he has to say is, "obviously, I ain't done with livin yet!" In fact, they have had to stop his treatments because he has lived longer than anyone else on the same treatment and they now fear thet the treatment itself may be detrimental to his health!

Keep your head up! As someone else already said, medical miracles are becoming the norm, and my family is living with one...

JRNOLL · 10-15-2011, 06:46 PM

Our prayers are on the way.

gcsprayjr · 10-15-2011, 07:36 PM

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.