Glad to hear that Make-A-Wish came through for you guys! I was going to tell you to get on their shit, pronto, because they don’t usually let things hang like that.
Marley! I am just now finding the thread that began last fall and this one too, of course. I’m glad I found it on a very good day! Glad your bro has good taste in music. I have even paid my respects to where Duane Allman and Berry Oakley are buried in Macon, Georgia. So you get to break bread together with Greg, huh? He is a really friendly guy so I am told.
There is no bluer song than Stormy Monday. Sometimes listening to the blues can pick up your spirits.
When I first found out about my aneurysm a couple of years ago, it was your brother’s story that gave me courage when I felt afraid. And yours too.
I’m glad your writing this all out. I’ve read every word you’ve written. You are a natural. Are both your parents writing? Has your other brother come to terms with this any better in recent weeks?
I may be like your brother. I build a wall around myself to keep from hurting.
Good to hear from you, Zoe, and thanks. Thanks to everybody. 
That’s a very beautiful place. I was there with my father in the summer of 2001.
There’s no word at this point on which band members might be there, or for that matter where the dinner would be. I did send an e-mail to Derek Trucks’ manager, and he’s going to do it if he can.
My dad and I got to have a short talk with Gregg after a show (jeez) almost eight years ago. He was definitely friendly.
Tell us about it. I’m surprised I haven’t played the Fillmore album more often, but we’ve all been listening to Derek Trucks’ latest.
I can’t tell you what that means. I hope you’re well and that one day soon we’ll have more to read in a much less stressful setting.
My father does sometimes, my mother rarely so. They’re both wiped out by all this. It’s very hard to tell what our tell what our other brother is feeling about anything.
I check in regularly on this thread, Marley. Thanks for the updates and my very best thoughts and prayers for you, your brother, and your folks.
Just a few more days until the 9th! Is he excited?
Is he able to eat and try to keep his weight up, or is he feeling icky most of the time?
I’m thinking about all of you.
He’s psyched! It only took him a couple of days to figure out who his companions would be at each of the 10 shows, which is by far the most organized thing I’ve ever seen him do. (I’ll be at six of them.) He’s taking our parents opening night, friends two or three nights, our dad (who’ll be at seven or eight shows) and uncle one night, me and my girlfriend on the 20th, and even our other brother if finally coming to a show.
For about a week I’ve been texting him once a day as a running countdown to opening night. Today I was thinking I should suggest he start considering a dinner spot for the 24th, although that’s still a while away.
I’m trying not to think about this right now, and once the shows start it’ll be pretty easy to go with the flow, but as soon as the run ends we go back to reality: the last show is the 28th, and they’ll take him to Boston to start radiation the next day. Treatment is scheduled to begin on the 30th. So my family was in Boston for more scans over the last two days and were also looking for a place to stay during the eight weeks of therapy. My brother is apparently okay with doing this whole radiation thing, much as he hated it the last time, so that’s a good thing.
I’m not sure how he’s feeling on a daily basis, Sleeps With Butterflies, but it’s been almost a month since the chemo ended - so I hope his hair, weight and appetite are closer to normal. (Well, the hair will take more time, but it should be growing back anyway.) I’ll find out when I visit them this weekend. My state of mind’s definitely improved since chemo ended as well. Come to think of it that probably explains why my work has gone better of late.
I’ve been following along too, Marley23, and I’m glad to hear things are going well. I hope he has a great time! Continuing good thoughts from this big brother to you and your little brother.
Here’s anothe bonus: I got us tickets to a Colbert report taping later this month. He’s under their age limit, but I talked somebody into it. 
Marley23, you are a cool brother!
The Beacon Run got off to a huge start Monday. The band kicked off the proceedings with a very rare performance of Duane Allman’s Little Martha that must have left many eyes teary, and then tore through a selection of old favorites and showcased guests Taj Mahal and Levon Helm. The setlist looked terrific, and over the phone I heard part of Don’t Want You No More>It’s Not My Cross to Bear, I Walk on Gilded Splinters and The Same Thing. My dad was lucky enough to score a ticket, so he was there with my brother and his friends. Last night’s show looked good too. Johnny Winter and the frontmen from Los Lobos appeared. I hear Boz Scaggs will be at Thursday’s show, but I won’t be checking because I like to build some suspense. I’m very much looking forward to Friday night.
Our Colbert Report show will be next Wednesday.
It’s not quite all sunshine: I visited my family Sunday night and ended up talking and jamming with my brother for a few hours. It was a conversation we needed to have, but I got a much fuller picture of how he’s feeling and what he thinks about his treatments and things and it was difficult. He really doesn’t want to return to Boston for more radiation. My parents gave me the impression he’s fine with it, but he isn’t. He’d rather wait and see what happens. There are some big risks associated with the radiation, again (extensive nerve damage, new tumors, potentially lethal aneurysm or aortic bleeding), and much of it is similar to what they’re telling us the tumor could do. On the other hand, some of the nerves ‘threatened’ by the tumor are already dead. This is a very short version of part of what was said. I called my mother Tuesday and stressed to her that she needs to listen to him and not try to force him do things. He’s the patient and it’s his life. Taking a break from this is not the same as giving up. The doctors think they can do something and she trusts them and wants to believe them, but we don’t know, and can’t, so his opinion and his quality of life have to be considered. She told me she probably wouldn’t change her mind and I tried to remind her that it’s not about her mind.
His hair hasn’t grown back at all so far, about a month after the chemo ended. If anything he’s got less in the way of eyebrows right now. He also tells me his appetite hasn’t returned, he still gets nauseous and he doesn’t sleep well. All of that will improve in time but I’m disappointed for him that it hasn’t to this point. He says he has nothing to look forward to and doesn’t think about the future much, and feels like my parents are paying more attention to his tutoring schedule (six days a week, I think) than his Make A Wish event. I asked if there was anything I can do, and there isn’t much according to thim, although we’ll try to spend some more time together. The end of the month should be great, that much is for sure.
You’re a great brother Marley23. Sounds lie a great show you got him to.
It should be a very cool month for him, What Exit? - although the credit for it goes to Make A Wish and to whoever they negotiated the ticket arrangements with, which I think was primarily MSG. The band gets the credit for the dinner thing, which is less than two weeks away. Not much in the way of details on that yet.
Tyler’s really lucky to have someone like you to listen and try to advocate for him with Mom and Dad. Keep working to help Mom realize that it really is his life and treatment, as much as she wants to be the decision-maker. I’m sure it’s hard for her because he’s not of legal age and he’s her baby, but…you’re nudging in the right direction. And, if nothing else, you’re giving Tyler an adult in his world who is trying to be honest and objective with him.
And the entire Make-a-Wish event sounds like it will be wonderful.
Good thoughts still headed in your whole family’s direction.
GT
Marley23- sorry things are so tough on your brother at the moment.
I’m hoping that the concerts and Colbert report are hving the desired effect on all of you.
Thinking about you and yours, as ever.
Thanks gang. I’m excited about tomorrow night’s show, although it’s different from the usual excitement I get prior to these concerts - then again, it’s been two years.
During the talk Sunday night I had one of those “Is this really happening?” moments for the first time in a while. I think these are probably normal, but I get them on and off even after this much time - I’ll be thinking about all of this stuff and idly wonder if it’s all real. Sometimes I’ll go weeks without having a moment like that, other times I’ll have a few of them in a few days. My girlfriend and some of my other friends report the same experience. I almost asked my brother about it Sunday. I was on the point of asking “Do you ever think ‘I can believe this is happening?’” I didn’t. I thought it would probably sound naive and detached.
I’m sorry to hear that he is feeling down about his treatment, but I don’t think it’s unusual. I hope that he finds a balance between his quality of life and the best treatment options. And as you say, it’s his life. He’s young, but ultimately that is where it ends, it’s his life. I think it will mean an enormous amount to him that you’re listening to him and how he feels. And spending that time with him is the best possible thing. When the dust settles, my guess is that this will be the most important thing to both of you.
I know exactly what you mean about those “is this real” moments. I had plenty of those, and I know my brother did as well. Sitting in a hospital room at 3:00 am listening to blues music on the laptop while the nurses bustle in and out every few minutes to check his vitals or administer another medication is simultaneously about as real and unreal you can get.
And I’m glad to hear he’s enjoying and looking forward to the Make a Wish things. Enjoy it with him and just keep on being that great big brother.
Yesterday I was at an Allman Brothers-related party near the Beacon, wearing a Stephen Colbert WristStrong bracelet on my right arm and a blue “Cure Chordoma” bracelet on my left. Pretty weird stuff: my brother gets a support bracelet? A very nice gesture, though, and I wonder if the fan who made it ordered enough to acution. She gave my family a few extra and my brother wore two of them to the show last night. Saturday night’s Allmans show featured Susan Tedeschi, Bruce Hornsby (a favorite of our mom, who was there, so that worked out well) and a horn section, and he described the whole thing as the time of his life. Starting Tuesday, we (and our father) will do four straight shows together, which should be wonderful but exhausting. Dinner plans with the musicians are not totally solidified, but they look promising.
They also saw Thursday night’s show, when Eric Clapton sat in for six songs.
If you saw Stephen Colbert Wednesday night, you caught two fleeting glimpses of the backs of our heads in the crowd. It was a very strong show and we were rewarded with the bracelets because technical delays prevented the taping from beginning on time. We had a great time and also enjoyed a Mexican lunch with our uncle, who flew in from Iowa to come to Tuesday night’s show (guests: Tommy Talton and Scott Boyer from Cowboy, Sheryl Crow). The adventure is really going to pick up from here.
Cool about the bracelets. The concerts sound awesome; glad the Colbert show was a good one!
Missed your post about things seeming unreal from time to time. I think that’s quite normal. I know I have that sense from time to time about pretty minor life events.
Continuing good thoughts heading your way.
GT
Marley–I am reading and trying to keep up, I’m just not posting. The shows sound fantastic! I am so glad that Make A Wish came through in such a big way. I am so sorry about the chemo not working. Is there anyone else who can talk to mom re what Lil Bro wants? At least you planted a seed.
It’s been TWO years?! Holy jeez, where does the time go? Still following along, Marley. Love to Tyler, you, and the rest of the pack.
Lisa