Marley, my heart aches for you and your family. Wishing you peace and comfort in the days ahead.
Marley, I know you don’t know me, but please know that I have been thinking of you and your family ever since I first read this thread. I’ve never been really good with words, and don’t know what to say except that I hope you all find peace.
It’s odd. I feel both sad for you and angry at the universe for doing this to your amazing brother. I only hope that I can be as strong as you all have been if I am put in a situation like yours.
Just got my thank you letter from the Chordoma Foundation today. Saw the return address on the envelope and had to fight back tears. The letter said “Thank you for your donation in honor of Tyler,” and it made me even more sad. I wish for all the world that Tyler didn’t need us to be honoring him; that he was just a normal kid going to college, pulling all-nighters after going out with his fake ID for his roommate’s birthday. But here we are, and words and $25 donations seem wholly inadequate.
I’m so sorry, and I hope that his passing is peaceful and painless. He’s shown more strength and grace and courage in his few years on Earth than most people do in long lifetimes, and so have you, Marley. Your words here are a tribute and an honor.
You’re one hell of a brother, Marley and it sounds like Tyler is one, as well. I’m very sorry that either of you have to go through this. I hope he finds peace.
I’ll pass that along when I get a chance. They’ve dialed his medication down a little bit to see if he can be more conscious while still keeping his pain under control. He seemed farther away today than yesterday, but we can’t tell if it’s because he’s on more methadone, or because of the tumor, exhaustion, or anything else. He was still aware of things sometimes and we watched part of The Big Lebowski. During the evening he ate a bunch of ice cubes. It’s possible that tomorrow he’ll be more able to appreciate the compliment.
Everything feels inadequate. Or maybe I should say everything IS inadequate in that there’s no way to get what we really want. But thank you very much for your donation. It’s nice to think he’s touched people he hasn’t met, and I’m grateful that people are helping. I hope one day they can make real progress in dealing with chordomas. It hurts to know it’s not going to help Tyler, although I realized that was likely a long time ago, but it’d be… well, I don’t know the exact right word. It’d be a positive, it’d be a good thing, and it’d also be something like revenge. I could go for that, too.
Tomorrow could get really bizarre. Mom says she wants to get a tattoo of the chordoma fundraising bracelet on her wrist, and if we can book an appointment I’ll go with her.
Ok, that just shattered my heart. I have three kids. If I had to let one go… My God, I just can’t fathom it. But she’ll have a piece of him on her wrist for as long as she can see it and feel it and she’ll touch it and touch him and it will be her physical connection to him for the rest of her life. I can totally see why she would want to do that and it’s so good of you to help her do it and be with her. It will give her something to hold onto. My heart breaks for your family, Marley. It’s just so damn sad.
Marley, I’ve been reading this since you’ve first started posting. I don’t really know what else to say except for I’m sorry. 
It seems like the other dopers have all said everything I’ve wanted to, and the only thing that I remains is this continual loop saying “It’s not fair!”
Oh, and to echo Rilchiam, I also agree that he is quite the cutie even though I felt a little evil at first for that being one of my most initial reactions but I’m glad to see that I wasn’t alone in thinking that. 
Good luck to you and your family.
I’m crying at work, and really hoping no one walks by my desk. I hate reading this thread and I don’t think I’m going to open it anymore. I’m so sorry.
Tyler’s beautiful.
You and your family are in my thoughts, I don’t have the words…
Okay, I’ll admit it, I think so too, but I was too embarrassed to say so. What a thing to think of at a time like this! Shame on me. :o
But look at it this way: Should his illness define him? So we react to how he looks, rather than the not-visible-in-the-photo fact of his illness. He probably would appreciate that.
While I didn’t notice his looks at first (I simply don’t swing that way), it’s true, he is extremely handsome. In fact, I’m amazed at how good he looks, even in the newest photos – at a glance, without knowledge of his illness, one would readily assume he’s just a regular college kid sleeping off a hangover.
Simply amazing.
I’ve got kids your age, and you brother’s. I’m pretty confident I wouldn’t deal with something like this half as well as you or your parents. While this thread makes me cry, I’m glad your family is so loving.
He is a good looking kid. I’m glad some of the ladies have said so.
Peace.
Tyler is quite a boy. He’s shown more courage and humor in his life than many people who’ve had a lot more time to do so. I’m glad to have had the chance to see some of that. Thank you for sharing him with us.
I’m sorry you all have to go through this, and the only thing I can think to say is that I’m glad that you’re all holding each other up. Marley, I know you’re the big brother, so don’t take this wrong, but the fact that your mother is losing her baby just breaks my heart.
This stinks. I’m so sorry you have to do it.
I think so. And the idea of being defined by his illness has bothered him a lot, I think. It’s one thing for us to talk about it but it’s another to have it as a constant reminder of things you can’t do or won’t be able to. I was talking to my mom about that the other day - the question of whether or not he’s had a good life or whether it’s been mostly suffering. There’s no easy answer. Whether or not it’s a good life I’d like to think he’s lived well and enjoyed his time as much as he could. I don’t know if that makes it worth all the suffering on balance, especially all the trouble he’s had in the last year.
Today was better than yesterday: Tyler was more awake and responsive. We took him outside in a wheelchair for a short walk with one of the dogs, and later he and I sat on the back patio and threw the ball for the big Gordon Setter, Jack. And he ate plenty of Snapple and Arizona ice cubes. It was a less dour day for everyone. I left the house around 7 so I could get back to the city. I needed a night in my own place and with my own girlfriend in my own bed. I’ll go back tomorrow afternoon. We’ll do the tattoo thing if we can make time. It’s hard for her to get away for an hour or two: she’s with Tyler every minute unless she’s eating or taking a phone call. The symbolism of getting the tattoo takes a back seat to actually being with him. I’ve never gone with someone to a tattoo appointment, so I’m a little nervous about that. Doubly so because it’s my mother and because she’s copying my tattoo.
Marley - Is there any way a tattoo artist could come to your place? Tyler might get a kick out of watching your mom get inked.
StG
Hi Marley,
Another silent reader here. Your brother is indeed handsome, and my heart is breaking for you and him and your family like everyone else’s here.
KNT
We just got around to setting up the tattoo appointment. It’ll be this time tomorrow afternoon. I remain a little nervous but I think this is a hard tattoo to screw up. She might actually get Tyler’s name done instead of just the blue band.
It’s hard to tell how things are going here. They put Tyler on Ativan yesterday to deal with his “agitation,” and since then he’s been almost nonverbal. That could be from the drug or from a combination of everything else. I don’t think his mouth is working very well either: it seems like he’s having trouble opening it. When he sleeps he sometimes stops breathing for a few seconds at a time, which made me wonder if he was going to make it through last night. He did, and I’m told it’s also possible he could live for a couple of weeks like this. It’s a little hard to imagine. The disabilities keep piling up. He has enough strength to sit up and stand with some assistance, but not much more than that. We took him out for a walk today and he couldn’t really help us get into his wheelchair. His eyes don’t close when he sleeps.
On the positive side he’s been getting an abundance of cuddling from the dogs. Jack and Brodie have been laying there with their heads or paws across his body for hours at a time. He doesn’t respond much and when he sleeps it seems to be deep, even with his eyes open. The other day two of his friends sent a huge Grateful Dead tapestry and it’s now hanging from the ceiling over his bed. I don’t know how much he’s seeing or feeling and it’s only going to get harder to understand. Mom is afraid of losing contact with him.