How is Tyler coming along now?
Sorry I missed your question, purple haze. Tyler returned to the hospital yesterday afternoon for an operation to restore some power to his voice, and so far it’s a definite success. He’s much easier to hear, and I’m sure things will only improve as his throat heals. He came back home this afternoon.
Since he still can’t eat much solid food, Tyler has accumulated a remarkable collection of chapsticks. My girlfriend have him a box of candy-flavored ones today, and that probably brings the total to 60.
The other night, I asked Tyler about the Simpsons episode we did. He said he didn’t remember it very well - he was in a fog at the time and slept through a little of it - so I gave him another copy. He really liked it, particularly the Jack Bauer/Samuel L. Jackson confrontation and some of the dialogue in the Kwik-E-Mart. To my surprise, he actually got that the ending was a reference to the famous Cal/Stanford kickoff return of 1982.
Oh yes, I forgot- at the hospital yesterday, there was another one of those “how did I not hear about this!?” moments that inspired this thread.
Tyler is deaf in his right ear, and has been since the surgeries. It could be that the tumor damaged the eighth cranial nerve, since it affected nine through twelve. It could also just be swelling that will go down in time, but there’s apparently nothing we can do either way. But I heard this yesterday evening while my parents and Tyler were talking to one of the doctors. My parents only learned it at Burke, although Dr. Sen said he told them earlier. And I found out mid-conversation three months after the operations. 
Anyway, Tyler is going to Boston for radiation on June 11, so he has a good five weeks left at home. Our Derek Trucks show only a week away, and Derek’s manager said he might be able to make Derek available to talk with Tyler for a little bit. I always want more time to chat with Derek, but this is good, because now I have the option of absenting myself and letting Tyler talk to him alone if that seems like the thing to do.
I think everybody reading this has a sense of how up-and-down this process is, but here’s a story that illustrates it nicely:
On May 10, Tyler was told he will have 42 days of radiation treatment in Boston - five days a week for 8 1/2 weeks. We were under the impression his treatment would last a month, so that was rough and he was very disappointed.
That night, I took him to see the Derek Trucks Band. He almost left partway through due to his discomfort, but stayed for all of a great performance. Derek’s manager never got back to me, but by sheer luck, he ended up sitting two seats away from me - so we took Tyler around to the stage door after the show, and he got to talk to Derek for a few minutes. They talked football and a few other things.
Tyler doesn’t have to wear that damnable collar anymore - he wore a neckbrace whenever he went outside, pretty much - and he’s now eating more solid food. He started eating crackers and drinking iced tea the other day, and ate a burger this evening. He wasn’t satisfied with the place he was doing physical therapy, so he’s going back to Burke on an outpatient basis.
Meanwhile, I’m headed upstate this evening. I’m spending a long weekend around Cold Spring with my girlfriend as we celebrate my 25th birthday (Saturday) with another concert and some other good fun. 24 was a very hard year - in addition to Tyler’s situation, now in its sixth month, a friend of mine died in July. Things peaked a little after my birthday, which was when I started dating my girlfriend. I knew I was on a very good run and it wouldn’t last forever, and I think I’ve paid that back in full. Things have been looking up recently, and here’s hoping that continues for a while.
Happy birthday, youngster! 
I hope things continue to improve with your brother. You and your family certainly have been through the wringer.
Happy birthday! I hope you enjoy your special day. My birthday is tomorrow too, although, I will be 18 years older than you!
What initially inspired this thread, especially the title, was not just Tyler’s tumor. It was the whole communication thing, and how I was finding out important things that I would have wanted to know way, waaaay after they happened.
For example, did you know Tyler had a stroke during surgery in January? I’m guessing you didn’t, because I only found that out at dinner tonight. (Same thing that happened with his deafness last month.) It’s hard to ask somebody to spread this kind of news around, but I’m also upset that I didn’t know for four months.
Meanwhile, Tyler isn’t having the greatest time either. He was in Boston yesterday and today to run MRIs and CAT scans to help the doctors plan his treatment. He had another lumbar puncture, which hurt, but what really upset him is some of the risks associated with the radiation: he was told that he could develop new tumors, suffer nerve damage on the left side of his body - he’s mostly recovered from the damage to his right side - or have another stroke [hence the previous paragraph, as the words “another stroke” tend to set off alarm bells when spoken by a 14-year-old].
One of the surgeons told Tyler that about the rarity of clival chordomas: about 1 in 20 million people get one, and one-fifth of those are kids under the age of 18. I did the math over and over, and that makes Tyler one of about 66 kids in the world who’ve had to deal with this thing.
“I told you you were special,” my mom said. He was complaining at dinner that his life sucks. He’s more than entitled to complain, but think he’ll need to buck up before the treatment starts. I’m already planning to visit him in Boston and try to take in a midnight screening of the Simpsons movie, which is less than two months away.
I’ll also have to try to explain statistics to him sometime. He seems to think that the radiation isn’t worth it because there’s a 1 in 20 million chance he’d get another chordoma. That’s not how it works, because those odds went out the window the moment he got the thing (1:1) and the recurrence rate is very high. I’ll have to discuss all of this with him later… meanwhile we have a lot to think about, and the fun atmosphere of having him at home is significantly faded.
You and your brother are in my thoughts. You are wonderful for trying so hard to keep him optimistic about things.
You are a damn fine brother, and you’re doing great. Thanks for the update, Tyler and you are in my thoughts often.
Personally, I greatly and genuinely respect and admire the spirit both of you have exhibited throughout this difficult challenge.
Keep up the great work and know that this whole community is pulling for you both.
I just wanted to let you know I’m still keeping you and your brother in my thoughts.
Thanks very much. I think this will be my last post here until Tyler goes to Boston. I should be able to visit him regularly, but haven’t planned anything. He’s going on June 10, and a few days before that he’s supposed to have another voice procedure. The May operation was somewhat successful, but Tyler was supposed to be partly awake during it so they could test his voice. They over-sedated him and he slept through it. I thought he sounded pretty good after that procedure and has gone backward since then, so maybe this will do more to fix things.
Thanks for keeping us all updated on your brother’s progress. I definitely hope that the upcoming procedures and treatments go smoothly.
That’d be a nice change of pace. Looking back at it, I think the hospital stay is a big part of Tyler’s irritation and doubt about the radiation. Tyler and my mother both focused on the most optimistic possibilities and figured he’d be back home about two weeks after his surgeries without much in the way of complication. And then he stayed there for two months, had meningitis and a stroke and went deaf in one ear, needed a month of rehab, and is still getting some of his food through a tube in his stomach. So now, when he hears he might have another stroke or tumors or more nerve damage, I guess he thinks it will probably happen.
You and your brother are in my prayers.
Regards,
Shodan
Still reading, Marley. Still pulling for Tyler, you, and your family.
I moved to Manhattan last weekend and haven’t set up my computer or Internet connection yet, otherwise I would take more time with this post. But Tyler and my parents are in Boston now and, while I haven’t heard anything, today is supposed to be his first day of radiation.
It was a strange weekend, even moreso considering I’d moved out. It was dour, but we lounged around and had a good time. There was a lot of videogaming, selected episodes of the Simpsons and four or five hours of The Sopranos. Family and friends streamed in and out, like a smaller version of what happened when he came back from Burke almost two months ago. They didn’t bother Tyler as much and a lot of them paid more attention to my parents, which is fine.
The comparisons to January were sometimes painful. My mother didn’t begin a conversation in January with “this is going to suck.” There’s not too much optimism right now because they have a more balanced view of how these things turn out - some things go as well as they possibly could, some go as badly as they could, some are in the middle. None of which is very comforting given the side effects and discomfort of radiation therapy. There’s probably as much hope as they need, but maybe not as much as we’d want.
My girlfriend came over Sunday and helped us see him off, which helped a lot. The loneliness will be back, that’s for sure - we’re more spread out than ever now, with Tyler and my mom in Boston, me in the city, my dad at home but working and Jonah trying to figure out what to do with himself. But we did make a good show of Tyler leaving. He did a John Cleese walk out of the house, and I gave him a quick pep talk. We shouted “kick this thing’s ass,” and a few minutes later they piled into the car, put on “Free Fallin’” by Tom Petty and headed for the parkway.
Thanks for the update, Marley. There are a whole lot of us out here pulling for Tyler and for you and the rest of your family.
Good thoughts headed your way.
GT
Tyler is having his 11th treatment today and things are going well. The sessions are short - 10 or 15 minutes, I think - and he doesn’t seem to be feeling any residual effects. They might start wearing him down in a week or two, but then again they might not.
I visited him in Boston each of the last two weekends. It’s been pretty normal. We’re playing video games, watching bad movies, that kind of thing. Tyler was down yesterday, I think, because this was the weekend when he would have gone to camp (I forget if I discussed this, but he’s been going to the same camp for about five years and the kids all get very attached to it- dare I say it’s cultlike?) if he was well enough. We knew that was probably not going to happen this year, but he hoped it would until around the time he found out the details of his radiation treatment.
We did have a very good weekend, though. We saw Billy Connolly perform in Boston Saturday, and he was very funny. We also bought some vintage bowling shirts. Tyler’s is a gold and purple number that would have fit Jesus in The Big Lebowski, but apparently belonged to someone named Hilary. Mine comes from a guy named Edwin on a team called the Lockport Moose.
Two college friends of mine got married in Wellesley the weekend before that, and it was an amazing experience. Since then I’ve been hard at work on a book about everything that’s happened in the last six months (or really, the last year or so). The next time I talk to Tyler, I’ll recruit him and see if he wants to get involved. I think it’ll be a much better story if it has that inside-outside dynamic.
Just saw this thread. Thanks for the updates on Tyler. Hang in there, all of you.
How does Tyler keep up with his studies? I know it’s summer and all, but he must have missed a significant portion of school. Are his friends still involved? I hope so.
He was home-tutored in English, math, global studies and science, and got some assignments from other classes. He is still required to take the end-of-year Regents tests, and I know he got a 91 on the math test, which is very impressive. I think he has to take the science test in August [I don’t know if he did English already], perhaps while he’s still in Boston. He’s hoping to do just enough to pass.
You’ve never heard anybody complain as much in your life as Tyler did about having to read one act - a single act! - of Romeo and Juliet. I played Capulet as a senior and summed up the first two acts for him in a 175-character text message, but somehow this was an incredible burden on him. He insists he hates Shakespeare, although it’s mostly his way of torturing me.
He hasn’t been in school since the middle of January, except for one day this month. His English class wanted to give him an award, I think for character, and he decided to stay for the rest of the day. His friends have been in touch and seen him at home when they could. He’ll see a bunch of them in two weeks, when my mom takes him to camp for a weekend visit.