# My Brother the Chemo Kid **URL:** \ **Category:** Miscellaneous and Personal Stuff I Must Share\ **Created:** [November 26, 2008, 3:37pm UTC](https://boards.straightdope.com/t/my-brother-the-chemo-kid/474563 "2008-11-26T15:37:41Z")\ **Posts on this page:** 20\ **Page:** 4
**Author:** ![KGS](https://avatars.discourse-cdn.com/v4/letter/k/90ced4/32.png) [@KGS](https://boards.straightdope.com/u/KGS)\ **Post date:** [February 1, 2009, 5:36pm UTC](https://boards.straightdope.com/t/my-brother-the-chemo-kid/474563/61 "2009-02-01T17:36:49Z")
Oh man, that sucks. ☹ Does Tyler know? Keep fighting, and keep thinking happy thoughts – remember, there’s always hope, no matter how bleak things seem. And enjoy the game! ---
**Author:** ![Marley23](https://avatars.discourse-cdn.com/v4/letter/m/45deac/32.png) [@Marley23](https://boards.straightdope.com/u/Marley23)\ **Post date:** [February 1, 2009, 6:34pm UTC](https://boards.straightdope.com/t/my-brother-the-chemo-kid/474563/62 "2009-02-01T18:34:52Z")
> [@KGS](#): > > Does Tyler know? I assume he does. This is more of a shock thing from my end, I think. I knew they didn’t want to operate anyway unless the tumor shrank, but this makes it sound a lot more serious. ---
**Author:** ![Shayna](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/shayna/32/17976_2.png) [@Shayna](https://boards.straightdope.com/u/Shayna)\ **Post date:** [February 1, 2009, 6:52pm UTC](https://boards.straightdope.com/t/my-brother-the-chemo-kid/474563/63 "2009-02-01T18:52:43Z")
> [@Marley23](#): > > In my posts about all these events over the last two years I’ve complained on a few occasions that my family fails to tell me important things. I got one more of those tonight. The tumor is inoperable. Somehow this never came up since, I don’t know, September or October. That’s the major reason the Boston doctors opted for chemotherapy and not surgery or radiation. The tumor is too close to a major artery (subclavian maybe?) for them to go in and get it. If the chemotherapy shrinks and there is more space between the tumor and the artery, that could change, so that’s part of what we’re waiting to hear in a week. I suppose it doesn’t matter if the tumor comes or goes as long as it’s dead and doesn’t spread any further, but I felt this was a major piece of information and nobody ever bothered to tell me. > > Hospital Bowl II is tomorrow. I visited my brother in the hospital this afternoon and he was kind of down and lethargic, so I’m hoping the game and some more company gives him a lift. I won’t bore you with the details of my personal experience with people keeping important information from me, but suffice it to say, I totally understand and empathize with your hurt, frustration, and even anger. Coincidentally, I read [this article](http://www.redbookmag.com/kids-family/advice/mothers-intuition-4) about mothers trusting their gut instincts just this morning and one of the stories in it reminded me of your post. > [@](#): > > . . . > > I brought Pete to the hospital, where he had a CT scan. My husband, Jeff, and I watched as Pete underwent testing, and I could tell right away the technicians didn’t like what they saw. > > "We found out that [our 2 year old son] Pete had a large mass in his brain. Within hours we were on our way by helicopter to a hospital in Portland, OR — 300 miles away. Pete was diagnosed with pineoblastoma, a very rare brain tumor. The doctors said that Pete would have to have extremely high doses of chemotherapy but that his developing brain was too young for radiation. \*\*They also told us it was too dangerous to remove the tumor. \*\*But I had a feeling that if Pete was going to have any chance at beating this, he would have to have this tumor removed. Instinctually, I knew I had to get him out of that hospital and find better care for him. There had to be a doctor who could remove that beast from Pete’s head. > > "I knew I had a task at hand: Find a different doctor. **I called, e-mailed, and sent records to surgeons all over the country that week.** We connected with doctors at St. Jude Children’s Research Hospital in Memphis, and the following Sunday we were on a plane to the only place that recognized how urgent our situation was. By the time we got to St. Jude, the tumor had more than doubled in size, **but the surgeons were able to remove it**. > > “Today, Pete is doing well, and my nightmares have stopped. If I hadn’t listened to the voice that told me to find doctors who would remove his tumor, Peter would not be alive.” I know your family’s been through a lot, and seen a lot of different doctors, but maybe it wouldn’t hurt to do what this woman did, and start a campaign to find a doctor/hospital that will do more for your brother? Wishing your whole family success and healing. ---
**Author:** ![Marley23](https://avatars.discourse-cdn.com/v4/letter/m/45deac/32.png) [@Marley23](https://boards.straightdope.com/u/Marley23)\ **Post date:** [February 1, 2009, 7:49pm UTC](https://boards.straightdope.com/t/my-brother-the-chemo-kid/474563/64 "2009-02-01T19:49:35Z")
Interesting food for thought, **Shayna**. While I’m on the record as not liking this hospital very much, the radiologists have not steered us wrong to this point and that’s where this comes from. It’s a shock to me but not the core issue: the tumor itself does not directly threaten his life and isn’t causing any pain. My mom is very much the ‘don’t take no for an answer’ type, although this experience may have beaten some of that out of her. Stopping his chemotherapy and looking around for surgery, which could cause more break-offs, doesn’t seem like the best choice now. Even if this chemo isn’t the solution I think we have to give it a full shot, through this week, before we look at other options. ---
**Author:** ![Shayna](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/shayna/32/17976_2.png) [@Shayna](https://boards.straightdope.com/u/Shayna)\ **Post date:** [February 1, 2009, 11:53pm UTC](https://boards.straightdope.com/t/my-brother-the-chemo-kid/474563/65 "2009-02-01T23:53:43Z")
Oh I would never advocate stopping his current treatment. But perhaps it couldn’t hurt to simultaneously start sending his records around and making phone calls to see if there’s a doctor who’d be willing (and skilled enough!) to remove the tumor. Second, third, fourth opinions and all that. Hope you’re at least enjoying the game (or the commercials) today! ---
**Author:** ![lavenderviolet](https://avatars.discourse-cdn.com/v4/letter/l/cdc98d/32.png) [@lavenderviolet](https://boards.straightdope.com/u/lavenderviolet)\ **Post date:** [February 2, 2009, 10:35pm UTC](https://boards.straightdope.com/t/my-brother-the-chemo-kid/474563/66 "2009-02-02T22:35:39Z")
Even if it cannot be removed with conventional surgery (or if the risk of a catastrophic surgical complication doesn’t justify removing it), there may be other options. It might be worthwhile to inquire about if cryoablation or radiofrequency ablation might be options at some point. Of course, that’s not the main thing for now. Good luck. 🙂 ---
**Author:** ![Marley23](https://avatars.discourse-cdn.com/v4/letter/m/45deac/32.png) [@Marley23](https://boards.straightdope.com/u/Marley23)\ **Post date:** [February 3, 2009, 3:22am UTC](https://boards.straightdope.com/t/my-brother-the-chemo-kid/474563/67 "2009-02-03T03:22:19Z")
There are always options. If anything there are too many because there’s no standardized treatment for something this rare. I know of someone else who had a chordoma and skipped the radiation altogether in favor of radiosurgery. First things first: my brother left the hospital this evening and the MRI that helps determine the next phase of treatment is next week. I’m guessing they’ll advise more chemotherapy. I’d be happy with almost anything else, and that would not be well received at home, but we’ll have to see. ---
**Author:** ![Marley23](https://avatars.discourse-cdn.com/v4/letter/m/45deac/32.png) [@Marley23](https://boards.straightdope.com/u/Marley23)\ **Post date:** [February 13, 2009, 1:30pm UTC](https://boards.straightdope.com/t/my-brother-the-chemo-kid/474563/68 "2009-02-13T13:30:54Z")
We have a very big day coming up today, and more next week. My brother had an MRI yesterday to check for tumor change, and we’ll get the results later today. In the middle of the week, a team of doctors will make a recommendation on what comes next. Fingers crossed. ---
**Author:** ![twickster](https://avatars.discourse-cdn.com/v4/letter/t/ec9cab/32.png) [@twickster](https://boards.straightdope.com/u/twickster)\ **Post date:** [February 13, 2009, 2:17pm UTC](https://boards.straightdope.com/t/my-brother-the-chemo-kid/474563/69 "2009-02-13T14:17:08Z")
Prayers-and-miscellaneous-good-vibes firing up chez twicks. ---
**Author:** ![Harmonious\_Discord](https://avatars.discourse-cdn.com/v4/letter/h/74df32/32.png) [@Harmonious\_Discord](https://boards.straightdope.com/u/Harmonious_Discord)\ **Post date:** [February 13, 2009, 2:31pm UTC](https://boards.straightdope.com/t/my-brother-the-chemo-kid/474563/70 "2009-02-13T14:31:19Z")
I’m still checking your threads on this. I await good results. ---
**Author:** ![Marley23](https://avatars.discourse-cdn.com/v4/letter/m/45deac/32.png) [@Marley23](https://boards.straightdope.com/u/Marley23)\ **Post date:** [February 13, 2009, 4:36pm UTC](https://boards.straightdope.com/t/my-brother-the-chemo-kid/474563/71 "2009-02-13T16:36:55Z")
Like a shitty pizza parlor when you want a slice and all you have is a 20, there’s NO CHANGE. This is what I expected, since there wasn’t any change through the first two rounds, but it’s still disappointing in its own right. So now we wait until Tuesday when the doctors weigh in. I assume the options are more chemotherapy, radiation, and doing nothing because this thing isn’t hurting him and hasn’t grown in months. I can’t say I see any indication as to which of those they would prefer. If they suggest more chemotherapy, I assume my brother would say no and I’d support him. It would be pointless from what I can tell, and he’s tired of being bald and nauseous and lethargic all the time. ---
**Author:** ![WordMan](https://avatars.discourse-cdn.com/v4/letter/w/e8c25b/32.png) [@WordMan](https://boards.straightdope.com/u/WordMan)\ **Post date:** [February 13, 2009, 4:55pm UTC](https://boards.straightdope.com/t/my-brother-the-chemo-kid/474563/72 "2009-02-13T16:55:10Z")
Crap. ---
**Author:** ![Khadaji](https://avatars.discourse-cdn.com/v4/letter/k/9e8a1a/32.png) [@Khadaji](https://boards.straightdope.com/u/Khadaji)\ **Post date:** [February 13, 2009, 5:21pm UTC](https://boards.straightdope.com/t/my-brother-the-chemo-kid/474563/73 "2009-02-13T17:21:08Z")
Disappointing, to say the least. Here’s hoping the docs will have something good to say. ---
**Author:** ![Marley23](https://avatars.discourse-cdn.com/v4/letter/m/45deac/32.png) [@Marley23](https://boards.straightdope.com/u/Marley23)\ **Post date:** [February 20, 2009, 1:06pm UTC](https://boards.straightdope.com/t/my-brother-the-chemo-kid/474563/74 "2009-02-20T13:06:14Z")
The radiologist wants to do another eight weeks of radiation on my brother, starting NOW NOW NOW. Well, in a month or so. By medical standards I think that’s “right away.” Stop me if you’ve heard this song before: This is a critical time (critical time!) To prevent further tumor growth (ain’t gonna grow no more!) The tumor borders on nerves related to swallowing (oh!) speech (ee!) and hearing (ah!) Waiting could cause more damage, and it would be a crime! (hummmm) The nerve: if the tumor keeps growing, it’s gonna absorb it… Let’s make sure! Let’s nuke it from orbit! © George Gershwin So, yes. Six months ago, it was critical we get something done, which, after three months of wasted time, turned out to be chemotherapy. The chemotherapy didn’t shrink the tumor and did not apparently stop its growth, since it also didn’t grow in the two months between the discovery and the start of chemo. But now it’s still a critical juncture and now we need to do radiation, which has essentially all the same side effects as the tumor and can create new tumors. The outcomes, my mother pointed out, are not good regardless. But the spot that was irradiated last summer has not been a problem, so if not for the tumor piece that broke off during surgey, he might be fine now. Of course, we can’t turn back the clock on that. After something like five weeks we still haven’t heard anything from Make A Wish, either - they said we’d hear from them in thre weeks. If we followed the doctor’s plan, radiation would start around March 18 and both of my brother’s wishes would be tossed out the window anyway, since he wouldn’t be able to do the Allmans shows (March 10 through 28) or opening day at the Stadium (April 3). At the time we spoke he hadn’t been told about this, so I don’t know his reaction. In an earlier conversation he sounded willing to try radiation. I hope to find out this afternoon. I freaked out pretty badly at this news and I’m still trying to figure out how I feel about it. ---
**Author:** ![What\_Exit](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/what_exit/32/10652_2.png) [@What\_Exit](https://boards.straightdope.com/u/What_Exit)\ **Post date:** [February 20, 2009, 1:36pm UTC](https://boards.straightdope.com/t/my-brother-the-chemo-kid/474563/75 "2009-02-20T13:36:38Z")
I can’t imagine the frustration you are going through. Are you and your parents remembering to take care yourselves too? ---
**Author:** ![WordMan](https://avatars.discourse-cdn.com/v4/letter/w/e8c25b/32.png) [@WordMan](https://boards.straightdope.com/u/WordMan)\ **Post date:** [February 20, 2009, 1:43pm UTC](https://boards.straightdope.com/t/my-brother-the-chemo-kid/474563/76 "2009-02-20T13:43:56Z")
Crap. ---
**Author:** ![twickster](https://avatars.discourse-cdn.com/v4/letter/t/ec9cab/32.png) [@twickster](https://boards.straightdope.com/u/twickster)\ **Post date:** [February 20, 2009, 1:47pm UTC](https://boards.straightdope.com/t/my-brother-the-chemo-kid/474563/77 "2009-02-20T13:47:27Z")
I’m so sorry. Hang in there. ---
**Author:** ![An\_Arky](https://avatars.discourse-cdn.com/v4/letter/a/87869e/32.png) [@An\_Arky](https://boards.straightdope.com/u/An_Arky)\ **Post date:** [February 20, 2009, 1:56pm UTC](https://boards.straightdope.com/t/my-brother-the-chemo-kid/474563/78 "2009-02-20T13:56:17Z")
I’m very sorry to hear that. I am doing the heathen equivalent of praying for his recovery… OK, that was nice, but Churchill is more appropriate: “…we shall fight in France, we shall fight on the seas and oceans, we shall fight with growing confidence and growing strength in the air, we shall defend our Island, whatever the cost may be, we shall fight on the beaches, we shall fight on the landing grounds, we shall fight in the fields and in the streets, we shall fight in the hills; we shall never surrender…” Fuck Cancer. ---
**Author:** ![Northern\_Piper](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/northern_piper/32/5304_2.png) [@Northern\_Piper](https://boards.straightdope.com/u/Northern_Piper)\ **Post date:** [February 20, 2009, 3:39pm UTC](https://boards.straightdope.com/t/my-brother-the-chemo-kid/474563/79 "2009-02-20T15:39:52Z")
thinking of you and Chemo Kid, **Marley**. Hope things improve. ---
**Author:** ![Marley23](https://avatars.discourse-cdn.com/v4/letter/m/45deac/32.png) [@Marley23](https://boards.straightdope.com/u/Marley23)\ **Post date:** [February 20, 2009, 7:57pm UTC](https://boards.straightdope.com/t/my-brother-the-chemo-kid/474563/80 "2009-02-20T19:57:40Z")
How’s this for an about face: the Make-A-Wish folks came through! He’s getting three tickets to 10 of the 15 Allman Brothers Beacon shows next month, including a postshow dinner one night with band members TBD (and a limo ride to said dinner). He doesn’t know about yesterday’s news yet, but he knew the basics on the radiation plan and timeline and was okay with it. It wouldn’t be possible to start in mid-March while doing this, of course, but if he wants the radiation they can do it about two weeks later. Such good news at a time we needed it very badly. I had a long night yesterday and hardly slept- now we’ve got this huge even to look forward to. It starts March 9! [Previous page](https://boards.straightdope.com/t/my-brother-the-chemo-kid/474563.md?page=3) [Next page](https://boards.straightdope.com/t/my-brother-the-chemo-kid/474563.md?page=5)