Let's start with a joke:
What do you get when you have a room full of specialty doctors discussing Rob's case?
Answer: stumped
HAHAHAHA! Funny, huh? I still cannot stop laughing.
OK. Rob and I returned home after a very nice meeting/appointment with Dr. Collins for Rob's surgery follow-up and to let us know what the Tumor Board recommended. I am just going to list the items below...
* The tumor in his lung has a unique pathology
* The second tumor (mediastinum, remember???) had gone through the lining of the chest wall, but not in the surrounding areas
* The second tumor (see above) was right in the center of the radiation field (the radiation he received last time) - apparently it wasn't effective (no offense to you Tarali, giver of radiation)
* There are no case studies with Rob's cancer situation (young, recurrent, male) - he just doesn't fit any mold
* He is three deviations from standard in a bell curve
* "They" can count on one hand the amount of young, male patients that have had their adencarcinoma reoccur in a different lobe (this is why there is no data/studies)
* Dr. Collins is having the pathologists send Rob's tumor to Denver to have it checked for GENETIC MUTATIONS. This may help to determine what medicine would be effective, if any (!!! - I wonder whether he will sprout knives between his knuckles when he is ready to fight??)
* For the kind of cancer Rob has, he should be a female (did he have some sort of change that I don't know about??)
* John Thomson (Rob's radiation oncologist) wants to present Rob's case to all Wasatch Front radiation oncologists at a conference to get a broader opinion
* Greg Litton (Rob's oncologist) said in that Tumor meeting that there is no data to support Rob getting chemo again. One option would be to wait to see if it reoccurs again and then treat, but given Rob's age it might would be OK to do chemo right now
So, basically we know just about as much as we did yesterday. It seems as though we are on our own? I don't know. It seems crazy. So, we make some more appointments with the two oncologists in the next month or so and hopefully we can discuss options then.
(I hope that if Rob really is a mutant, he will be just like Wolverine. Hugh Jackman is so cute AND he can heal himself. Rob is cute, too. No, he doesn't have to wear black (or blue/yellow) Spandex. Remember, though, Wolverine can heal himself!)
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3 comments:
What's with are neighborhood, that people we love get cancer/tumors, that only a handfull of people in the world get? Our houses must be built on top of an ancient indian nuclear reactor.
You guys are awesome. We'll keep the positive vibes going for Rob.
Erik Hacking
I love the humor! I hate it when you go to the doc and they can't answer your questions. But usually my questions are more like how do you get this baby to stop spitting up? Or how do you get this kid to stop obsessing over star wars?
You are still in our prayers, I have been worrying for you! Just in case you weren't worrying enough. I really don't know what to say, sorry for the blah, blah.
Hi Rob and family,
We are thinking and talking about you everyday here at work, sending you all the good juju we can over the vapors.
Rob, you are one of most innovative members of our team, but I think having an innovative- never-seen-before tumor is taking things to the extreme. Feel free to tell you tumor to think in the box.
Glad to hear you have doggie to sit on your feet, I imagine that the fish was maybe not so comforting:)
Keep getting better, Rob. We miss you.
Sarah and the rest of your R&D team.
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