Sick_Boy_Paddy

Ha. Well, having been diagnosed on Jan 1, 2014, and I didn't go home till April, I so I got to skip that winter, and being in for transplant has allowed me to skip a lot of this one as well. Still, though, the snow is kinda bothersome. Currently I'm in the Hackerman-Patz building, which are apartments attached to the Orleans garage. When I go to my appointments during the week I do have to go through the garage, though, and it is COLD. Shit, I'll wear two sweatshirts and a blanket and everything but I think somewhere between having no body hair and being 100 pounds offset all that. Insofar as games, I haven't actually played much, but I did come prepared, that's for sure. I have my PS3 and TV, a Vita, two PSPs and a gameboy. Also my netbook and USB n64 controllers for emulators. I also brought a few borrowed Xbox 360 games from friends to play on the 360 in the hospital rooms in Bloomberg. Like I said, though, I've hardly touched most of it. Back at KKI though I played a lot of Wii bowling in the spine gym. Lol.

And insofar as food, yeah, I'm doing okay now! December-january there were maybe 3-4 weeks straight where I ate NOTHING while in the hospital but I've been doing better since recovering at Hackerman. I'm eating tortilla chips and queso right now. :p I ate a lot of peanut butter and scandi shakes throughout my treatment. And cheeseburgers. So many cheeseburgers.

He said they take sponge baths. So yes. He sponges his nethers.

Source: have had to give self sponge baths in hospital

Heh. Of course! For me, when I have no appetite, it becomes "craving first, health later", which means if I have a craving, even a ridiculous one, focus on satisfying that, I have to capitalize on every opportunity I get where I can actually eat, and WANT to eat. But usually, when I'm feeling more normal, and have a regular appetite again, that's where actual nutrition gets swapped back into higher priority, since at that point I know I'm going to eat SOMETHING either way, so it may as well be something good.

Hey, thank you so much! There are quite a few very very ugly pictures, but I've left those out. :p Yes, my father was my marrow donor. Because of the need for a 50% match, biological parents are often the best choices since they're a 50% match by default. Siblings often work too, but in this case my sister was actually a 100% match! Meaning her marrow would do me no better than my own had.

I'm among the first handful of patients to use the BMT treatment for this specific disease, and so far they say I've done really well, progressing ahead of schedule. My case data will be used in a study regarding the long-term effectiveness of the BMT treatment to keep the Ewing's from returning. This is the 2nd study I've participated in since my diagnosis.

Helping medical science has to be my favorite and most important accomplishment throughout all of this. The other stuff may sound more miraculous, but that's personal stuff. None of those miracles benefitted anybody but me, but the opportunity to be studied and maybe help some future sick kids has inherent benefit beyond anything I'll ever do.

First, thank you, and congrats to you as well. I was definitely really worried about the BMT, whether I needed it or not, and I debated with myself for some time over it even after having gotten it already. Still, Ewing's is something that has a high recurrence frequency, a large percentage of folks who get it, will get it again. Because of that, and the large amount of damage it can do in a very short time even before detection, I decided to give it a go.