Sorry, I blew past this question. Nothing’s changed with their status, and the kids are doing really well. I forget what they’re doing for Halloween. The older one wanted to be Miss Piggy, but I think he’s been talked out of it.
Yesterday was one of the worst days in the latter part of our crazy chordoma experience. We had a consultation at NYU in the afternoon, and just from the start all signs screamed “trainwreck.”
I walked in to the office and received an enthusiastic “Hiiiii!” from one of the nurses. It was the kind of greeting you give a small child, and there were plenty of small children in the waiting room. I met the lead doctor a few minutes later. He was an older man wearing a hideous green Mr. Rogers-type sweater. It made him look like an old wooden puppet. He said hello quickly, and that was almost the last we saw of him. After he left, my mom complained that in their first meeting, he repeatedly said things like “It’s a very rare tumor, but we’ll do the very best we can to make him comfortable” and crossing all his fingers. This sort of stuff sends the message that they don’t expect too much and neither should we.
Eventually we had the consultation and the lead doctor explained that they were planning a regimen of daily Tarceva pills, and IVs of loxosomal doxorubicin and carboplatin every three weeks for at least two cycles. I asked why he wanted to use a lung and pancreatic cancer drug and I thought his reasons were sensible, but from there, things mostly went south.
First there were the potential side effects, of course: exhaustion, liver and kidney toxicity, hair loss, depressed immune system and infertility. (They helpfully mentioned they have an affiliation with a sperm bank.) My brother was pretty badly upset by a lot of this talk - I knew about most of it, but I forgot how difficult it is to hear all at once. They said he could keep going to school but said he should avoid germs, which was a less than helpful proviso.
We kept hearing, in the week or so before this meeting, that if everything looked good they would start the chemo on Thursday. They kept this notion alive until the middle of the meeting, when they explained that they’d want him to start the Tarceva for about two days prior to his first IVs of carboplatin and doxorubicin, oh, and there were some urine and blood tests they’d have to do first, that’d take a day or two to get results, and oh, he’d have to have either a PIC line installed in his arm or a mediport in his chest, and they’d want to give him two to five days to heal after that procedure and before the chemo, so actually…
By this time my parents were bickering a little and everybody was stressed. My brother asked some questions - I’d asked him to chime in since the doctor wasn’t really addressing him - and he was pretty desperate to avoid the PIC line or mediport. PIC lines stick out of your arm and they’re distracting and, frankly, creepy, and he’s had one of those before. He really doesn’t want one, but they insisted it’s necessary. While he said he needed to think about which one he would prefer to have, they kept pressing him on the issue for reasons I don’t understand. The doctor seemed to prefer a PIC line. Then the sweater-wearing lead doctor popped in, just for a minute, and enthusiastically recommended a mediport.
“Why wouldn’t you want one?” he said. “It keeps your hands free!”
He gave us one or two bland pleasantries, crossed all his fingers again and left. I was ready to get up and yell at him but he actually didn’t say enough to justify even a pent-up response.
We went on and on like that for a while, with my parents and brother trying to understand the directives they were being given, like “There’s no kind of food he should avoid, but don’t go places with a lot of germs, like restaurants or fast food places, and wash everything and don’t give him food that’s been sitting around,” and the school thing, which made a convoluted kind of sense but was not very clear.
Eventually my brother said he didn’t want any kind of treatment at all and left the room. My parents couldn’t stop arguing, so I went out to find him. We talked in front of the building for about 20 minutes. I offered my view that the treatment was going to suck, but it would only cost him a few months, and if it was really damaging the quality of his life, he could stop, whereas if he refused treatment now, it probably wouldn’t be an option later, so it was worth a couple of months of crap. I didn’t push it because mostly he needed time.
After a while we went into the lobby and spent 10 or 15 minutes making fun of the names of the doctors who worked in the building. (There were some really, really good ones - an unusually fruitful directory.) Finally my parents finished the meeting and came downstairs. The three of them fought for about half an hour as we tried to find a place for dinner, with everybody calling everybody else some names you really don’t want to hear from family members while you’re dealing with brain cancer, and my brother punching my dad a lot, even by his standards (it’s become a game with them). We ended up at a seafood place and had a somewhat pleasant dinner.
Today, my family is going to a consultation at a different hospital. They won’t be as far along and won’t have a drug cocktail in mind, but if they just do a better job dealing with my family, they’ll probably end up there instead.
Separately, it looks like the kids are gone - my parents dropped them off with an aunt and uncle earlier this week, amid much dithering that actually hasn’t resolved itself at all - and over the weekend, they adopted an enormous new dog. I’m looking forward to meeting him Thursday night.
Yikes, sounds like a whole lot to deal with. There’s nothing I can say except that you and your brother (and your parents) are damned brave folks for fighting so hard.
((Marley’s whole family))
Marley, I’m so sorry that you and your family are having to go through this right now.
The one thing I know for certain is that kid is incredibly lucky to have such a loving, supportive brother as yourself. When I read about the story of your family all I can see is this incredible strength, borne of a deep and abiding love. I hope things get easier soon, for all of you.
Thank you. Last night just sucked hard, there’s not much else I can say about it. The news and the environment were bad, and having my family take it out on each other as a way of dealing with it didn’t help.
The current consultation is taking place now. I’m not really sure what they are expecting to hear (all my mom offered was “same shit, different day”), I’m just hoping the tone is good and that if they like these people, they’re able to come to a conclusion and start treatment soon. Time is still an issue here, the tumor was pretty aggressive even though it has not spread.
I do want to repeat something my mom said at dinner, because I thought it was something David Mamet might’ve written: “I’m pretty fucking direct.”
Damn.
I knew it was a bad sign when I saw your name as Last Poster to the thread.
I wish serious illness was like in TV movies, where people become more noble and brave and virtuous under stress. But they remain themselves, for good or ill. Usually both. You and your family, especially your brother, are in my prayers and thoughts.
And next time you see him, if you get a chance, tell him
Regards,
Shodan
There have certainly been moments of nobility, it’s just that the rest of it fundamentally sucks, and being noble doesn’t really change that. People get like that under stress, my parents are who they are, and it’s not really fair to expect them to be something different at this moment, but still it was NOT the time I wanted to be listening to that junk. We’ve done the ‘forced family unity’ thing for about as long as we can, I suppose. It’s been almost two years.
They just left the LIJ consultation and are very satisfied, so that’s the place. The doctor there hasn’t completed reviewed our files, but he’s proposing a regimen with a larger number of drugs (and mostly older ones, from what I can tell, whereas Tarceva is new and Gleevec even newer) because he says he’s seen them work in chordoma and sarcoma before.
The drugs were vincristine, cyclophosphamide, ifosfamide, Mesna, doxorubicin and etoposide. Interestingly, cyclophosphamide and ifosfamide are apparently derived in some fashion from mustard gas. Mesna is supposed to stop those two drugs from causing internal bleeding. Etoposide is used to block cell proliferation and it’s extracted from the mayapple.Doxorubicin is used to scare children.
So my brother will have the mediport put in shortly and begin this treatment - at least two three-week cycles of all those drugs, with maybe two given each week instead of all at once. That means more doctors’ visits by a factor of three, but it’s also closer to their home than NYU.
Wow! Just when you thought the experiences couldn’t get suckier… At least today’s consultation sounds like it went reasonably.
You and your whole family are in my thoughts and prayers. Hope the kids are happy in their new situation.
Thanks for the update.
GT
Not too much to add today (then why am I posting? oh well) - after a series of scans over the weekend, the doctors installed the mediport early this morning. We still don’t know exactly when the chemo is supposed to start, and the sperm sample issue should be worked out first. Apparently it’s surprisingly expensive and not covered by insurance.
ETA: My father tells me infertility after this kind of chemo is “not uncommon.”
I also meant to add that we’ve been calling the mediport his Arc Reactor because one of his camp friends made an excellent Iron Man joke about it.
Marley-
I may not always post a response, but I am ALWAYS listening to what you are saying in this thread. I’m glad you feel you can post even when there isn’t much to say-I’m hoping it’s helpful for you to be able to do that. I take it that treatment will start very soon? That’s good, the sooner the better. No doubt it’s a bit of a relief for all of you to have a course of treatment selected and chemo starting as soon as possible.
Keep us updated. Most people that read this thread know why you need to post this. We also want the updates, because we do care about this.
Thanks guys. We’ve written a book about our experiences and I’m trying to share it with a larger audience, but I still like to know people over here are listening. I enjoy keeping people posted anyway.
The chemo may start in the middle of this week. We’re still not clear on this point, really. The sperm bank thing has to be taken care of first. It costs at least a few thousand dollars, and logically the idea of paying thousands of dollars so a 16-year-old boy can do something already does for fr- anyway it has to get worked out. I have no idea how likely it is that he could be left sterile, but it’s possible and has to be reckoned with. I’ll certainly feel better the sooner he starts, even if he won’t.
And I’d like to tout the Arc Reactor thing a little further. That was a great joke, and I hope the idea gives him some extra resolve.
“Sperm sample issue” made me spit out my Coke…
Keep fighting the good fight, Marley. The book is an excellent idea, at least some good will come from this. Also, have you contacted the Make-A-Wish Foundation? Seems like Tyler would be a shoo-in for their program…
The Make a Wish people contacted us a year ago and offered us a trip or whatever else we wanted. At the time I think my mom was determined to ignore them, but they told us he doesn’t actually need to be dying or anything for them to help us out - they said they’re loaded. 
So now we’re thinking about taking them up on it and making a trip somewhere with the family and some friends. My mom likes Bali or Greece. I said I’d vote for any faraway island - Bali does sound good. He prefers Hawaii and it’s mostly his choice. I’ve been to Hawaii once before, but I’m the only one of us who has, my parents were jealous, and I’d never complain about going there again. It was very hard to leave the first time.
There’s no time frame on that, since we don’t have any idea how long his treatment will be and he still does have school to deal with. But we hope it’s on the horizon.
Marley - Why don’t you ask the Make-A-Wish people to pay for the sprerm sample - in a clinic in Hawaii?
StG
Contact them (Make a wish). Go to Hawaii. I hope things go well. At least the Medi-port is in. I think of you and Tyler often. Prayers and thoughts are for you all as well.
Sperm bank, Hawaii… everybody wins! 
That’d actually not a bad idea, but we can’t go to Hawaii for a week or whatever right now. This chemo needs to start pronto. It’ll be two to four cycles (six to 12 weeks) of that, and then probably surgery or radiation to finish off whatever is left of the tumor, before we can think about going anywhere. That probably puts us somewhere in March at the earliest.
And I have to hope it does take that long. Because in all likelihood they’d only quit after two cycles if it’s not working, and if the chemo doesn’t work we’re only going to have to make some harder decisions.
You’ve probably already got your spermbanking stuff figured out, but if not, here’s a link to a “spermbanking by mail” site that may offer him some choices not considered.
http://www.fertilehope.org/financial-assistance/sperm-banking.cfm
Seriously - can’t you just buy your brother some Playboys and get a plastic cup? Hella cheaper…
Marley23, thanks for all of your posting here. I can’t imagine how much this must all suck, and I (like everyone else here) think of you and your family often. It’s probably small comfort (and feels like pretty small help, too), but you and yours are in my thoughts.
If there’s ever anything any one of us could do for you, know you have only to ask.