Yeah, well, that’s one of those reasons we didn’t go with NYU. I don’t know what LIJ feels about it, but we’ll see if he goes to school tomorrow. My mom will certainly be on his case about it.
Promised I wasn’t going to bump this until my brother’s next treatment, which is on the 15th, but here’s a minor item - ABC World News (with Charlie Gibson, or as I call him, “the old anchor who isn’t Schieffer”) profiled the cofounder of the Chordoma Foundation, Josh Sommer, back in March. Tonight they’ll be talking to him again for an update.
Josh is a medical student at Duke who was diagnosed with a chordoma in his freshman year. He’s still there, doing research on the disease as well as leading the foundation with his mother, Dr. Simone Sommer. [This is not stuff I know off the top of my head.] The show begins at 6:30 Eastern this evening and the segment on Josh will be on near the end.
If you’re interested in finding out about chordomas, or if you’ve been confused by any of my past explanations - because I know for a fact I’ve contradicted myself several times as I’ve learned more - please tune in.
Thanks for the heads-up, Marley. I’m always interested in learning more about these types of conditions, especially when they affect a friend.
Knowledge is power, right?
Ooh…caught this just in time. Here’s a bump as I go off to turn the TV on.
Hey, he’s a teenager on chemo. That’s as good an excuse for smoking a joint as you can get. And from reports from friends (including an 80-year-old lady, whose grandson was her ‘dealer’), it really does an effective job on the nausea and promoting appetite.
…like he needed an excuse. 
Spaniels, FTW! Adorable puppy, Marley23. Best wishes to you and your lil’ bro.
He’s cute for sure, and he seems pretty bright. He’s now progressed to the gnawing on everything stage and his weight is up 50 percent in the two-plus weeks my family’s had him - he’s at about 13.5 pounds now. He won’t fit in that Build-a-Bear bed much longer. He’s also getting along with the Spaniel pretty well. We worried that’d be a problem with each of the new dogs because she’s such a jerk, but it hasn’t been an issue. She plays with Jack all the time, and the worst thing she does is growl occasionally and sometimes steal food from him and Brodie. She’s the boss and they don’t seem to mind. We’ll see what happens when Jack is full grown.
Tuesday night I took the bro’ to the Jimmy V Classic at Madison Square Garden. We had excellent seats, very close to ESPN’s broadcasters, for both games (including a great game out of Davidson’s Stephen Curry, who lit up the building). It was a fun night out - although of course, the Jimmy V Classic benefits a cancer foundation, so between games and at halftimes, we heard a lot about cancer… so as a distraction I can’t say it was a 100% success. :smack: Not much I could do about that. We had a good time.
The second game ended just after midnight and we’d already agreed to make a detour, so we went back to my place and I shaved my brother’s head. When I visited my family Monday, he said his hair was coming out in clumps in the shower. The roots are dead, so even a modest tug was enough to take it out. So I cut off the longest parts, which I discovered are somewhat artfully arranged to cover his scars and the shunt in his head, and then went at it with my electric razor. It’s not the neatest head-shaving ever - with that shunt line he’d probably give a phrenologist nightmares - but we got the job done. His head felt small in my hands, which is strange considering we’re about the same height these days.
He said he wanted to lose the hair “on my own terms” if it was going to happen at all, which it clearly was. Letting me do it made it sort of fun - although my reason for volunteering was a little different. Seeing cancer patients with almost invisible wisps of dandelion hair is pretty sad, and I think it makes them look sicker than if they had no hair at all. I didn’t volunteer this information. But I did suggest that if (probably when) he loses his eyebrow hair, he draw on some Groucho Marx eyebrows with greasepaint. He said he was considering a unibrow instead. I think it’d be outstanding if he drew on different eyebrows or eyebrow stand-ins every day.
In terms of more consequential stuff, the high school principal asked if he’d like to lead any kind of fundraising effort for chordoma, and of course, my brother said yes, and he’d be happy to speak about it. We’ll see how that develops. He’ll be in the hospital all next week, not school, and I’m sure he’ll need at least a few days to recover the following week.
There’s a StrongBad cartoon where StrongBad draws various eyebrows on StrongMad’s face, and labels them and such. It’s hilarious (well, SpouseO and I find it hilarious, anyway). I’ll see if I can find the name, but if you haven’t, go to homestarrunner.com and shop through the StrongBad emails with your brother. Fantastic stuff there (IMHO, obviously).
Ok: I’m going to throw the floor open to Make A Wish suggestions here. They’re going to meet with us sometime after the holidays, not that everything has to be settled right then. And I’m aware it’s not my call. But I want options.
We’ve talked about true vacations, and bro seemed to favor Hawaii. I’ve been there, but I wouldn’t object to going again. If anything I might like to go even farther away from here, but it’s fine. My mom would prefer to go somewhere a little more refined or romantic, like Greece or Bali. Bali is totally fine because of the distance thing. He’s also talked about something a little more up his alley, less of the “once in a lifetime vacation” variety- like lots of Allman Brothers tickets, or perhaps playoff tix for his Carolina Panthers. I like the Allmans way more than most people (it runs in the family), but I’ve seen them close to 50 times already and I’d like to do something more special than that, and more unique than football. So I’d like to hear your ideas.
Beyond that, things are pretty good. He’s been in the hospital since Monday, getting daily treatments of a few drugs. The anti-nausea meds are working this time, so he’s bored off his ass but feeling okay. He’ll go home Friday, and we’re planning on watching the Panthers-Giants game Sunday night.
And we’re making other Cheer-Up plans: on Monday we’re going to some kind of private Knicks party. We’re not Knicks fans, but I guess we’ll fake it. We’re also being given tickets near the bench to a home game next month. He was successfully cheered by going to the Jets game this weekend, but as a Bills fans I was horribly depressed. 
It should be his call, not mom’s or anyone else’s. If all he wants is tix to the Allman’s, so be it.
make a wish will do anything, IMS. I think Hawaii sounds great.
And so it is. That doesn’t mean we can’t offer ideas or lobby a little.
Glad to hear he’s tolerating the treatment better this time around.
I don’t have many suggestions for the Make-A-Wish. I tend to agree that long term he’d remember a great trip more than a series of concerts, but it’s hard to say. If it was me, I’d go to England and see Stonehenge and then troll around London. Sounds like he’s a sports fan, maybe take in some English football. I’m not a sports person, but I understand those games can be very exciting.
Or how about Superbowl tickets?
He’d definitely be up for that, especially if Carolina makes it. I don’t know when this is all going down, so I don’t know if it’s possible for this year.
In passing, today is the second anniversary of the chordoma diagnosis. That’s kind of unbelievable. It’s amazing we’ve been living with this for so long. It’s amazing that that’s two years when the average survival from diagnosis is only seven years. But here we are for whatever that’s worth.
My mom recently set up a journal on the Chordoma Foundation site - like everybody else, she’s soliciting donations for research. Her goal is $5,000, and today they updated her total for the first time. $986 in only a week!
Is there a Bowl game that he’d be interested in or would those be too soon?
My aunt & cousin just came back from Greece. They went in early June and it was blistering hot and lots of walking up and down hills. There wasn’t much to do besides eat, drink and look at ruins. Which was cool for them but might be a little hard for your young brother to take. It sounds like a neat place (I want to go!) but it’s not really an ‘event’ destination for a young teen.
Maybe a cruise? Maybe one of those floating-city type ships with a million places to see and a few fun ports for exploring?
Probably too soon. I don’t know if we’ve set a date to meet with these people, but I think it’ll be in the post-Christmas/early New Year period, and the bowl games end January 8. He’s not really into college football from what I can tell. He’ll watch sometimes with his friends and bet on it, but he doesn’t wear jerseys or have a fantasy team.
I left this one sitting for a while, so here’s an update:
Chemo resumed Monday after a two week break. My brother desperately did not want to go. Over the weekend, he’d had an MRI done and it showed the tumor is not growing. (Scans in September and November showed the same.) He insisted this means the thing must be dead so he shouldn’t have to take any more of tihs treatment. Eventually he went along with it, was in the hospital overnight and is recovering now.
The shit with the MRI is really confusing, to be honest, because the doctors told us immediately that the results were not a surprise, not a big deal, and not really a positive or a negative either way. “So why’d you do them at all?” one wonders.
The fact that they can’t observe any growth means it’s not growing or shrinking significantly, so there’s that. But the real test comes in a few weeks when they do a biopsy and see how the cells are dividing, if they’re still dividing at all. At that point we get to decide about further chemo or surgery or radiation or whatever combination, depending on what they recommend in Boston. Meanwhile he’ll go back to the hospital for another night next week, then get his week off, then the full week in the hospital again.
Carolina plays its first playoff game tomorrow, so we’ll be watching that together. “Unfortunately” (well, my brother thinks it’s unfortunate), we can’t see the whole thing because we’re seeing Lewis Black give a talk in the city in the evening. I think we’re going to a Knicks game next week. So we’re doing our best to keep him occupied, which is good.
We did get some sad news yesterday: a girl about my brother’s age who was diagnosed with chordoma five years ago died during the holidays. We didn’t know her personally, but her name came up a lot while we were deciding on treatments. NYU wanted to give him the same regimen she was using at the end. Mom suggested we not mention this to my brother, and at least for now I’m going along with it because he had no personal relationship with her, but the news might bring him down seriously. On his own, he probably isn’t going to find out in the first place. I wouldn’t lie to him about it if he asked me, and I don’t think my family would either, but there’s no reason to bring it up.