This sucks.
I’m sending good thoughts for Marleybo, who sounds like one of the toughest people out there.
Thanks for the update. Here’s all my best wishes for this to be as easy as possible.
Thanks for the update. Wish there was something any of us could do to make things better. More good thoughts heading your way.
Much appreciated. I don’t want to be a bother, but if you do happen to stumble across a cure for cancer and it’s not too much trouble, please let me know. I’ll tell the Nobel people and stuff.
Here’s this week’s update: the visit to Boston will be on Thursday. Treatment will start on Oct. 14, but they won’t tell them how long the treatment is going to last until the face-to-face visit Thursday. I’ve got no idea why that is - health insurance laws, I think - but it seems pretty ridiculous. Getting in touch with the radiologist was also a trial and a half. He was traveling until the 14th, but for whatever reason he didn’t contact my mother until the 19th- and even then, he only spoke to her because she’d accidentally called him at home.
Dana Farber? We’ve got quite a few great hospitals here in MA. I’m so sorry to hear about your brother. I’ll keep you all in my thoughts…
I think I saw that in the back hall closet. I’ll rummage around a bit and see what I can find…
:)
(no rueful smileys)
Didn’t see this till just now. Guess I’ll go take a look around at the cancer hospital around the corner and up the street. I’m sure they’re hiding it there somewhere. 
More good thoughts headed your way…
GT
I thought it was Boston Childrens, but it looks like it’s actually Mass General. Not a lot of places do this kind of radiation treatment.
Somehow I have overlooked earlier stories about your brother, and this thread as well.
Geez, this really bites. I’ll say a prayer for your brother. Names don’t matter, God knows who I mean if I say Marley23’s brother.
Oh, Jeez. I’m so sorry your brother and you and your family are having to go through this. I actually uttered the words, ‘‘No, no, no…’’ out loud when I read your thread title and then the author.
That kid really seems incredibly strong. I’m in awe of his strength.
Thursday sucked and we’re all trying to figure out what to do. It turns out there are a lot more options than anyone had hinted, and we won’t know what anybody wants to do until next week, when they’re done looking at Tyler’s latest scans. They might do the radiation treatment and then operate, or they might do that and then follow up with more radiation, or they might do radiation seeding. They may not remove the tumor at all, since it’s not the cause of my brother’s neck discomfort. If there’s an operation, it might happen in Boston and not New York because the radiologist wants to be able to see the procedure up close and he can’t be in an OR in New York. We’re not sure if Dr. Sen will be involved if it happens in Boston, but like I said, now we don’t know if there will be an operation at all.
My brother was very concerned about the side effects, which are hard to predict because we don’t know what they want to do in the first place. He could lose more hair, for one thing - he didn’t lose hair because of the radiation last time, but there’s one hairless area on his head due to scarring. (He’s grown his hair longer and wears a hat a lot, so you can’t really tell.) But he could lose a larger amount here, possibly permanently. If they irradiate some cranial nerves and things break the worst, he said he could lose the use of his right arm. The brain tumor already damaged it and this could make the damage worse. It’s hard to predict but we’re looking at loads of extra uncertainty, and it just sucks.
On Thursday this was way too much for my mom. She called and cried on the phone, and was trying to get me to make our other brother get more involved in reaching out emotionally, so he doesn’t regret it if he doesn’t have long to live. She’s never brought this up explicitly before and it was very hard to hear. And if I knew how to get this brother more involved that way, I’d have done it a long time ago.
So sorry. Continued good thoughts for Tyler and you and your family.
GT
Aw, Christ, Marley, that’s awful. Prayers headed your way.
Heh, well, if you thought THAT was awful…
I talked to my mom for half an hour today and things feel like they’re collapsing around us. The radiology people were set to tell us a course of treatment Friday, but after looking at his scans they want my brother back in Boston Thursday. Can that ever be good news? No. It looks like the tumor is changing. They want to do a needle biopsy of the tumor and run full body scans, because it looks like the tumor is changing. They say it grew too fast and looks too aggressive - it was undetectable in March and is now two centimeters - so I think they believe it has changed, or is in the process of changing, from a chordoma to a sarcoma. If that’s what they find, they may or may not operate, but radiation would be out the window. They’d do chemo instead, and I know how what chemo is like.
I don’t know what to say except this makes everything look a lot harder and more hopeless, like we’re fighting guerrilla warfare and the enemy is changing tactics on us. Mom admitted today that my brother really didn’t want to do more radiation or chemo, which I probably said already, but he’s apparently on board, as he should be. But he made her promise that she’d “let him go” if that was what he wanted, and if he chose that instead of treatment after treatment. He has to at least make this one go of it, I think, but now that idea is out there in the open and we know what could happen.
Some time last year, the Make A Wish people asked her if she wanted to arrange some kind of trip anywhere in the world for him and us. He didn’t have to be terminal, they said - they have the money. She ignored them but my dad raised the topic again and she’s thinking about it now. She asked me for trip ideas, along with questions for the appointment Thursday.
If you’ve followed this stuff for a while and read the thread about my parents taking in my mom’s grand-nephews, maybe you can appreciate how completely lost my mom is feeling, and to hear her tell it, my dad is worse. She was talking about people falling to pieces and not being able to get them back together.
My girlfriend happend to send me an email from the Chordoma Foundation the other day. I probably posted in the old thread that my brother and my dad went to a chordoma research conference in the spring and found it really inspiring. My dad talked to parents, and Tyler heard a speech by a younger boy named Justin about what he’d been through. As you can see at that link, Justin died last week at age 13, six years after being diagnosed with a chordoma.
My mom has always been the very straightahead, don’t-dance-around-it type, and I guess that’s why she’s talking to me about these things. My dad and my other brother ignore things whenever they can. So she stayed practical before, but now she’s wondering if there’s any point to Tyler being in school. Should he just be having fun with whatever time he has? Does 11th grade or college matter for him? Is it worth putting him through that? I tried to tell her it was, to help keep her focused on a future that he very well may have, to keep her goal oriented, which is something she’s always excelled at. But I don’t know either. They say nobody ever died wishing he’d spent more time at the office, but that has to go double for teenagers and school. We’re not at that point, but I guess we’re all feeling a little like Sarah Palin right now - we don’t have any answers and have no idea what to do or what’s ahead, but we can see it from here.
{{{Marley}}}
Geez, I am so fucking sorry to hear all of this.
You and Tyler and your entire family (esp. your amazing mother) are all in my thoughts and prayers.
Oh man Marley, that is tough. I have nothing to add or say except I’m hoping your family gets some good news soon. I cannot imagine what you and your family and especially Tyler are going through. Stay strong and keeping hoping.
Jim
Oh, dear. God that looks glib. I am so sorry.
Please, please, please, contact the Make A Wish people–sure he can take a trip etc, but they also have places which act as respite for the whole family. Not a respite FROM little brother; the whole family is supported and embraced. I have a coworker who went to Disneyworld with her granddaughter and her daughter etc and they stayed on the MaW grounds. She said it was a balm and a haven to her. Now, that child is just 4 (leukemia), but I’m sure they have stuff for older kids.
I don’t think your mom will regret contacting them. Do you all have a pastor or similar that can help with end of life decisions? I think it’s good that you all are talking about it. May it not happen, but to get it out on the table allows Tyler to express himself and his needs/desires and (worst case) helps in the grieving process. I wish more families had the courage to do so (not that it is easy by any means).
Keep in mind, re school, that teens want and need to be with their peers. If Tyler doesn’t go–what will he do? Nintendo? Playstation all day etc? Adolescence is such a selfish age–out of sight, out of mind for most teens. IMO, and you can tell me to go to hell, he needs that contact. I’d maybe stop worrying about grades etc., but even then-he needs a sense of accomplishment, as we all do. Grades and peer feedback give that to him.
Can other brother help with the grand nephews at all? Mom sounds like she needs some hands on help, as well emotional support.
You’re all in my thoughts and prayers (nominal Christian that I am).
Yeah, what eleanor said.
Sorry, Marley, I really am. I know how these things can make people and families crumble. Try to hang on.
Chemo is a lot better than it used to be. They have better control and the side effects can be mild. Don’t get totally freaked out by them saying chemo.