It’s very hard to reconcile my giggliness at the title of the thread with the sadness of its content. nevertheless, I wish you guys all good luck possible!
I am so sorry to hear this news. Please keep us posted, marley23. My best wishes to your brother and your family through this difficult time.
What do the doctors say about the post-op course? Will he need physical therapy or rehab like post strokes pts? I know nothing of brain surgery, but do know that young brains can relearn amazing things.
How are his friends taking this? Kids of that age tend to avoid major stuff-I hope that he has some friends who will stick by him.
Not at all. I did make an Ent pun (probably too bad to be acknowledged) in the OP… I don’t want to just depress people.
These are good questions, but I don’t know the answer yet. It may not be possible to know the answer until we see his response to the first operation. I don’t think he’d need a lot of physical therapy. The tumor may have weakened his right arm a little. As I’ve said, his speech problems may be permanent, but I’m sure we’d try something. I think they probably have to assess the exact damage further before we can figure out a rehab course.
I know that one of them wrote a letter to Tyler’s favorite football player (Steve Smith of the Carolina Panthers) and asked if he could visit Tyler or something like that. Tyler thought it was cute. Beyond that, I don’t know. He did go to school yesterday and today, but he said today was probably his last day of school for three months. He sounded less than sad about that. However, he had to have little cameras put up his nose yesterday and today, and that’ll happen again tomorrow.
Per my father, it probably is not a sarcoma. It’d be nice, but it probably isn’t the case. Still, we have had some very good luck in making a connection with a surgeon who has handled similar tumors. They say he does about two of these a year, while many other guys will do one or two in a lifetime. I’m told he operated on those Egyptian conjoined twins three years ago and is supposed to be really great. My dad heard about this guy through a co-worker who lives next door to another surgeon, who has taken it upon himself to advise and help us and review Tyler’s case. It’s about damn time we got a good break.
In short, I gather that they will be fusing Tyler’s skull to his spine, because the tumor has likely eaten some bone away (the clivus, maybe?) in addition to the nerve damage. So he will never play contact sports again. He won’t be able to turn his head. That will complicate tennis as well, but at least it doesn’t completely rule it out - we can still throw the football around, but no more league basketball.
Heh.
The last game of Tyler’s that I went to was really bad. His team this year really stunk (and are continuing to stink, I’m sure). He’s been on good teams and won championships, which I never did, but not this year. The last game was just horrible. More turnovers and bad plays than I could possibly believe. And then, when I thought Tyler’s team had finally won, the refs said the game would have an extra period, nine instead of eight, because the other team had a lot of players. The other team tied the game, so it went to overtime. Tyler’s team was winning after two minutes of overtime when they blew the whistle… but for some reason, they’d just inserted a halftime into overtime. So there were two more lousy minutes. Finally it ended, and Tyler’s team won the damn thing. I needed just the right quip, and we both love Futurama, so I chose a comment from that, and when he came over to us, I shouted…
“That was so terrible, I think you gave me cancer!”
Oops.
I can’t imagine how scary it is to see a loved on go through this. However, it sounds like your family is handling it the best that anyone possibly could. I definitely think it’s wise that you sought out a doctor who has experience with this sort of case. Sometimes that really makes a difference. It is so important to have a good doctor’s guidance in situations like this. My very best wishes to him and the rest of your family.
My Solstice candles are burning for Tyler, and for your whole family. May the dawn break soon.
You’re in my thoughts and prayers, Marley23. Hope all goes well. Please keep us posted.
Get him some nice sticky candy. A simple pleasure without braces. Best wishes.
Wow! I am so sorry to read about this. I’m sending best thoughts and warm wishes to your brother, you and the family.
I really hope that the best possible outcome is achieved.
Sounds like the surgery will be done by Dr. Chandranath Sen, which is just what we were hoping for. He sounds like a rock star in this field. They met him today, and surgery is scheduled for January 25. My family hopes they can do it sooner.
From a different site about him:
Sounds like some good news. Hope for the best.
I think you hit the jackpot on surgeons, Marley. What an incredible break!
This may sound strange coming from someone my age, but if I had a big brother, I would want him to be like you. Keep those jokes coming for the kid.
Look after yourself too to keep yourself emotionally strong – you know, lots of sleep, good food, exercise. I do know that the fear can be physically painful.
I’ll be thinking about you and your family.
Minor update here: nothing has changed in the last week or so, which has been great. Things feel much more settled at home. Tyler is still set for surgery on the 25th. Instead of that complicated deal where they were going to operate and leave him in a brace for a week, Dr. Sen and company are going to knock him out for three days and do all the work then. This is hardly over, but I’m very glad that things have been stable for a little while and that we’ve gotten some good signs going into the new year.
Still keeping you all in my thoughts and prayers…
Wow, just saw this. Sending helpful, healing thoughts to Tyler and you and your family, Marley. I’m hoping for the very best.
The big day is almost here. Tyler will spend Tuesday night in the city with my parents at the hospital hotel suite, then check in Wednesday morning. The other day, he said he’d realized he’s very scared. [He also admitted that his sore throat problems started two days after the first time he smoked pot. It was a unique conversation.]
I told him I was wondering when he’d figured out that he was scared. I’ve been spending a little more time at home lately, and we had a very nice weekend - Tyler and I watched football and tennis, and we played bunches of videogames with our middle brother. I’m hoping I can play tennis with him one more time tonight.
My mother advised me in the morning that he’ll be hooked up to any number of machines, including a ventilator, after surgery. Obvious stuff, but I hadn’t thought about it. I don’t look forward to seeing that, to say the least.
Saturday afternoon, I got this. It’s a family symbol of my own devising: the Roman numeral three represent me and my two brothers, the two other bars stand for my parents. I’ll show that to Tyler tomorrow night or Wednesday, whenever I end up giving him some parting words.
I hope all goes well and he has a speedy recovery. Stay strong.
Jim
They’ll probably remember to tell you this, but just in case they don’t: People coming out of surgery under general anesthesia and on a vent look really, really weird and sick for a day or so. Don’t be surprised if you literally don’t recognize him. Of course, right now you’re thinking, “But he’s my little bro, of course I’d recognize him!” I walked by my son, looking right at “that poor little fat boy in that bed” without getting that it was WhyKid.
They’ll give him a lot of IV fluids before and during surgery, so he’s likely to be very, very bloated and swollen looking - maybe even to the point where his skin actually looks taut and shiny. It won’t last long, as they’ll give him medication to help him urinate all the excess water out, but he’ll really look weird until that happens.
It’s not something you want to walk in on unprepared, believe me!
Prayers and well wishes coming from the WhyHouse for Tyler and for all of you.
Having gone through a recent scare with my son (turned out he’s fine), I am especially sensitive to your plight, Marley23 (thanks for your well wishes back in that thread, BTW), and I am beaming good thoughts your brother’s way. Try to stay strong; I know it’s very, very hard.
Marley little bro is in my thoughts and prayers along with you and the rest of your family. You’re a great big brother to be there for him like you’ve been.
Your whole family is in my thoughts and prayers.