Good vibes and prayers for the whole Marley family.
GT
Oh, shit, I’m sorry to hear that, Marley. I hope everything works out for the best.
Marley, I’m so incredibly sorry-I’ll keep you and your brother in my thoughts.
Good luck.
Marley, I am so very sorry for your kid brother, yourself and your family. Hopefully the Docs can find a way have him fully recover. Best wishes for a rapid recovery from the surgeries.
Jim
Thanks very much, gang. I think some of what I said in the OP was premature, you’ll have to excuse my confusion. He has a cranial chordoma (I just learned the term, indirectly, from my father via a post on another Web site). Wikipedia doesn’t even have an entry for that. I’m reading a little about them now, and I have to say I don’t like most of what I’m hearing. The key to everything, I guess, is where the tumor is. One surgeon yesterday said that the location is fortunate and that they’ll be able to get at it easily, whereas it might not even be possible to operate if it was higher up on his brain and I gather that these sorts of tumors grow steadily. Brother will see neurosurgeons in the next two days to learn more and plan the surgery. He’ll also need his braces off, normally a cause for celebration, so they can get a better picture on the MRI and MRA.
If I was the one talking to the doctors, maybe I’d be more positive about what’s happening - then again, maybe I wouldn’t. Probably we won’t have a firm answer on the benign/cancerous question until after the tumor is taken out, biopsied and anaylzed, which will be in the first days of January. So I don’t know for sure about him needing radiation, it just sounds like an option depending on what they find. He may have to go to Boston for treatment… as a young Yankee fan, the cure may be worse than the disease. 
Yeah. Right now, he’s fine. I’ve seen this situation before, and I’m glad he’s feeling good now, but I don’t expect it to last. I’m having a horrible day. To me, it’s like his condition got worse from yesterday, but I think for him, my parents and our middle brother, things are the same, or if anything, better because they have more time to deal with it. In any case, I’ll keep my strength up and I’ll be there when he needs it.
Well, he comes by the “nut” thing honestly, it runs in the family. He was frustrated today that his voice might not return, and he’ll miss tennis and some of camp - so whatever the situation, he’s worrying about his summer, not his life, which is good. I hope he doesn’t need to worry about that.
Everyone seems alright. I asked my mother about her feelings, and she’s the way she always is: she’s dealing with it by getting down to business and doing what has to be done. The old man posted a few feelings on another site and I know he’s worried, but he and the middle brother are characteristically quiet. Maybe my mother would give herself permission to react differently if Tyler wasn’t around the house all the time, but he’s missing school right now and that’s the way it is. Anything that’s bottled up will come out in the next few weeks or months, of that I’m sure.
That’s a lot of really difficult information for all of you to process all at once. I hope things go well for him and I’ll be thinking of all of you in the coming weeks.
I’m really sorry, Marley. Add my good thoughts and prayers to the collective well-wishes. Sounds like he has a really good attitude, which is an important thing.
I’m so very sorry to hear about this. 
Marley, {{hugs}} to you and your brother. Please keep posting to let us know how you and your family are doing.
Hugs and chocolate as needed, Marley
Marley, after the initial shock and everything has eased slightly, see if you can find your little bro a teenage cancer support group. In Australia there’s one called CanTeen and I’m sure there would be an equivalent org in your part of the world. Absolutely fabulous for helping the kids learn to live with a cancer diagnosis…and because it is specifically for young people rather than little kids or old farts, it takes into account all the other shit they are going through AS WELL as being crook with cancer.
And all my best wishes for the whole family during this time. Take it easy, and know that we’re here (at all hours of the day and bloody night) if you need to talk.
You’re all in my thoughts, Marley!
Hugs sent to Marley23 and bro. So sorry to hear this.
There are two national support organizations that can offer some info and comfort - I’ve spoken to them both to get information for families at my health library, and they are amazingly helpful.
The Children’s Brain Tumor Foundation:
The National Brain Tumor Foundation:
Also, the American Brain Tumor Association has an excellent booklet that I use often, “A Primer of Brain Tumors”:
http://www.abta.org/library.htm
I must say, the whole family sounds like good, tough people. You and your brother have my best wishes.
I sat down and had a talk with my dad last night to find out how he’s feeling and find out whatever else I could find out about what’s happening. This is going to be difficult.
Cranial chordoma is rarely cancerous, which is good but no longer seems terribly important. It’s a congenital problem, and the tumor is basically a mass of stem cells that didn’t differentiate properly and has continued to grow. Because it envelops some of the relevant nerves (cranial nerve IX, maybe, but I am just guesstimating), they can’t just cut around the tumor - I think they’ll be removing part of the nerve. As I mentioned, this is a congenital thing, so that means these nerves have been starved or crushed or whatever for a long time. The symptoms only showed up recently, but it means improvement is unlikely or at least difficult. With speech therapy, who knows, but if the nerves are dead I’m not sure how much room for improvement there is.
Tyler will see a neurosurgeon in the next day or two, and also a mastoid surgeon since they will be going in through the right side of the back of his head and there’s the possibility of hearing complications. The surgery may temporarily make his problems worse - for example, he may need a tracheotomy to allow him to breathe. His first surgery will shave down part of a bone in his skull to allow them to get at the tumor. They’re all big surgeries, but this is a long and complicated operation and the first may be the biggest. Then he’ll stay in the hospital for about five days, wearing the halo, and I think they will then put in the plate, because the surgery will affect the way his skull rests atop his spinal cord. There’s a possible third surgery, but I’m not sure what it would do exactly. I guess they don’t know yet if it will be necessary. The next MRI, without his braces, will give them a better idea where the tumor is and how much of it they can get at. It’s rare, my father says, that they get the whole thing in one try. And because the tumor cells are not very different from healthy cells, treatment will be difficult. It sounds like the answer is proton beam therapy.
I’ve only seen my father cry one other time that I can remember, at his father’s funeral. He’s worried and frustrated that he can’t do more, and while we know a lot of the scope of the problem, many things will stay up in the air until there are more tests. Tyler’s response to the first surgery will be crucial. And there IS reason to be more hopeful than some of this news indicates; he’s 14, he’s healthy (bruises and occasional broken bones aside) due to his sports and he doesn’t have a history of immune problems or anything like that. I’m trying to be ready for whatever happens.
Brains are amazing animals: if you lose part of one, the remaining part, while of course it doesn’t actually regerate, can do double-duty and fill in. I wonder if a book about the brain and how it works would make your brother feel more in control, or just scare the crap out of him?
Marley, your posts resonate with me because my family is also dealing with a tough diagnosis of a close family member. Sucks to have this stuff dumped on you, especially at Christmas, huh? I hope that you and your entire family are able to stay strong and positive for one another and for your brother; that he pulls through like a trooper; and that there are better days for all of you ahead. I will keep you in my prayers.
I’ll sound him out about that - maybe it’s a thing for a younger boy, but it could definitely be helpful. I think it’s important, depending on what kind of news we get in the next day or two, that we don’t scare him by overreacting. How much more scared can he be, I don’t know, but today is the MRI and MRA - he had the braces off in the morning - and I think the meeting with the cranial surgeon. So we’ll know more soon. I’m not enjoying the silence.
Today, I heard for the first time that there are options in what Tyler could have. Which is possibly good. He might have a clival chordoma, which is pretty much what I described in a previous post. He could also have (I think I got this right) a chondrosarcoma. In any case, he has something rare - my parents are choosing between two hospitals, but my mother was told that nobody sees more than three or four of these a year. We’re hoping, if that’s really the appropriate word, for the chondrosarcoma. Those don’t grow back as often as the chordomas do. Clival chordomas are benign, and chondrosarcomas are malignant. Thus, and I consider myself a chronicler of the bizarre and this is the weirdest sentence I’ve ever written, we’re hoping it’s cancer.
In either case, we won’t know until they remove the tumor. If it’s the chondrosarcoma, I think that’s where the proton beam therapy comes in. He’d have to travel to Boston for it. Today, my family is meeting with another surgeon… it was the cranial surgeon last night, the ENT today, I think. I haven’t heard anything about the results from the MRI and MRI, but I suppose the results of those things don’t make a big difference - it sounds like the big issue now is what kind of tumor he has. If he has the surgery on Long Island, he’s scheduled for January 2. The hospital in the city might do it a few days later. He was actually back in school yesterday and today.
I trimmed a Christmas tree last night with my girlfriend, my best friend and my girlfriend’s roommate. When I was distracted by the tree and our meal, it was a great time. When I’m not busy working or doing something, I feel like someone is punching through my ribcage and squeezing my heart. That’s not a simile. Anyway, we may know more tonight. But unlike last night, when I was expecting a phone call and was sure it was bad news when it didn’t come, at least today I can work and find out what’s what later. Tyler is also taking steroids now, and my mother swears she hears a little improvement, which could make a difference in I know not what. I’ll try to get a read on it tonight. Here’s hoping for improvement.
We’re all thinking about you and your whole family. Hang in there.