Granted that “Everybody’s OK” threads aren’t terribly interesting, but since I’ve gotten a few questions here and there about my little brother, I thought I’d centralize and let people know what’s going on.
When we left our intrepid heroes, my brother had come home from two months of radiation treatment and was happy to be back to his old life in New York. There’s no super-exciting conclusion to this story, really. Things are more normal than ever: he’s fighting with my parents all the time, playing Halo, bored by school and so on and so on. I moved out in June, so I don’t have to deal with it very often.
That’s not to say everything is totally standard. Tyler has had a few injections that were supposed to strengthen his palate (as I understand it), but they haven’t worked. If anything his voice has lost some more strength, and for the last month or two, he’s had problems swallowing. Basically, he has to tilt his head back when he’s drinking - otherwise his drink will come out his nose. There’s no guarantee anything will help, because obviously the injections haven’t done anything so far, but it might improve somewhat if he did some speech exercises.
A few weeks ago, Tyler and my dad drove to Maryland to attend a Chordoma Foundation conference. Tyler hasn’t talked about it too much, but my dad found it tremendously moving to meet other parents who’ve been through what he’s been through; a very small group. He actually said he “found God” and wants to organize a benefit concert or some other kind of event for this foundation. I don’t think I’ve ever seen him speak with that kind of purpose.
Thank you for the update. I am glad to see Tyler is in school etc. I hope that his swallowing etc can be worked out (I’m sure he sees his fill of speech pathologists etc, but is there any kind of therapy besides these injections(?) he can do?).
Nice to hear about your dad, too. We none of us know how we’ll respond to such a life changing event as this; I hope I would do so with as much grace and honor as your family has.
eleanor: the thing is, Tyler had to have some speech therapy when he was a kid - so did our middle brother, actually - and I think he’s that much more resistant as a result. He really, really doesn’t want to do these exercises. He makes some effort once in a while, I’m told, but he obviously finds it kind of embarrassing and undignified. He’s had speech assignments as far back as Boston but never made too much effort. There’s no guarantee of any particular results, either, which I’m sure it encouraging.
I’m sure you can understand where it’s frustrating to be told you need a treatment and then it doesn’t work. That’s been the deal with the injections. I believe they’re radium, and the general idea is that they’re supposed to keep air from leaking out of his nasal passages while he speaks. A bone or piece of cartilage that fills that function was removed during his first operation, when they pulled out most of the tumor through his nose. (I could be WAY off here, but I believe that’s what went on.) But as I said, so far that has been a failure. The stuff is weighing down his palette and affecting his swallowing. He sounds pretty much like he did in December at this point, which is discouraging. It’s a small problem considering, but I really hope it can be straightened out. He’s got enough frustration to deal with.
Glad to hear that Tyler is doing all right now. I think it’s great that your dad feels so passionate about doing something for the foundation. Let us know if he is able to arrange something and maybe the dopers will be able to help him with it.
Dayum. Your description (and I know nothing of this procedure or disease) makes me wonder about an implant or bone graft of some kind to replace what was lost?
Poor kid. He’s been through the war, but he needs to do those exercises. I don’t blame him for not wanting to, but… any way to make it less of a chore? I had a friend who did them with her child (admittedly, he was 4) when they were in the car running errands.
I guess it isn’t an option or a preferred option for whatever reason. I should get him in here some time soon to try to get a better read on how he’s coping. He was extremely frustrated with all this stuff a month ago, but by this point I think he’s just used to things going wrong.
Thank you so much for the update! I remember those threads on your bro and what a difficult time that must have been for both of you. I’m so glad to hear things are normalizing.
Marley, Tyler doesn’t know that he was a role model for me when I was going through a less serious problem a little over a year ago.
I found out in March of 2007 that I have a brain aneurysm. It scared the hell out of me. Everytime I just wanted to roll up in a ball in the corner, I would think of this fourteen year old kid who had just done what he had to do and did it with class. I couldn’t let someone a half century younger than I make me look like chicken shit.
Then after a few weeks, I found out that the aneurysm is small and in a part of my brain where it is not going to kill me even if it bursts. I need to have the size of it checked on again shortly, but I have been able to remain calmer through the whole series of tests because of the way Tyler handled something a lot heavier.
So I send one imaginary balloon and an imaginary coco-bust to your kid brother!
Thanks for the update. You won’t believe how often I think of him.
Thanks for the update. I was wondering how he was. Maybe he’ll feel better about the speech therapy later, after he’s spent some more time recovering. He must be feeling emotionally exhausted; I felt that way just reading about what he’s been through.
Thanks for the continued update, **Marley23 **- sounds like Tyler is still facing challenges but from a much better place than he was a few months ago…
Things have been mostly the same for the last six months or so. My family is trying to feel things out, and it’s only since Tyler got home that I’ve really appreciated the toll this took on my mom in particular. It’s when you compare things to where the were a year ago that it looks starkly different- for example I think Tyler came home from Burke a year ago yesterday. He was just starting back on solid food, still had that trache thing sticking out of his throat and a feeding tube in his stomach. Those things were disgusting and I know he’s even happier to be rid of them than I am.
Zoe, I’m sorry to hear about the aneurysm (I wonder if Hallmark has a “Sorry about your aneurysm” card). If this everlasting saga of complaining and mucus monitoring has helped you, I’m very happy for it.
