My medical condition finally got the best of me.

[ProtoKun7]

As the Time Lord you couldn't just travel to the future to find out?

You lose the thrill of the journey if you find out the outcome to every event rather than living through it.

 

[Kinekto]

Visited her again today, she seems to be much better. "Much better" as in on her laptop, doing things that confuse the heck out of me as usual for her. She still can't watch real-life TV shows because it makes her nauseated and causes her to vomit for some reason, among other minor problems. She also can't walk still, and won't until her balance regains enough, which I don't know how long that'll take. So she's still not entirely normal, but still a LOT better. Also, she's able to spend about an hour a day on her laptop now before getting exhausted or too "blah" feeling.

She told me to tell you guys that since she has no internet and a crappy laptop, she found and old installation of "RPG Maker VX" on the laptop, and is working on "making a game about the terrors of Cystic Fibrosis", but she wanted to stress that the game she's making "will NOT (she told me to stress that a lot) ever once use RPG Maker's default abysmally bad combat system, and that [she's] making a new combat system for her game based on a fast-paced rhythm RPG mechanic not similar to any other game that [she's] aware of".

So despite she's stuck in the hospital, it seems like she found a good way to use her time.

The thing is: I have no idea what she's planning to do with the game she's working on, and frankly I don't think she does either. It got me thinking about what's to come of this thread: when she's out of the hospital, maybe (as Densetsu sort of suggested) she can make a new thread, and it can be about the game she's working on. Since it'd be game related and a GBATemp member's project, maybe it could be stickied in place of this thread (this thread locked and un-stickied), and it could get what many people asked for of this thread, posted on the frontpage. That is entirely my idea, she doesn't even know I'm asking it, and I really don't think that thought ever crossed her mind.

What does everone else think of that idea? I'd love to bring her good news if everyone thinks it's a good idea.

 

[DinohScene]

That's great news!
Tell her I said Heya~ next time you visit her!

 

[EyeZ]

Amazing, she has found the energy already to be on the laptop and fully alert, good stuff!

 

[Kinekto]

Amazing, she has found the energy already to be on the laptop and fully alert, good stuff!

Thanks for reminding me (Was too focused on remembering what she told me to tell you guys), she's NOT fully alert or "with it" yet. She can't watch real-life TV shows still because it makes her nauseated and causes her to vomit for some reason, among other minor problems. So she's still not entirely normal, but still a LOT better, added that info to the above post.

 

[EyeZ]

Thanks for reminding me (Was too focused on what she told me to tell you guys), she's NOT fully alert or "with it" yet. She can't watch real-life TV shows still because it makes her nauseated and causes her to vomit. So she's still not entirely normal, but still a LOT better.

I see, when you said she was on the laptop and using the RPG maker i assumed she was fully alert, i did think it was a bit soon.

Anyway, it does still sound she making a good recovery, she's a fighter that girl.

 

[Damian666]

good news everyone :3

she made it her bitch, and is making games

damn she's tough

 

[Kinekto]

I see, when you said she was on the laptop and using the RPG maker i assumed she was fully alert, i did think it was a bit soon.

Anyway, it does still sound she making a good recovery, she's a fighter that girl.

RPG Maker (by what I saw of it) has SNES-like graphics, very easy on the eyes. She's only on her laptop maybe an hour per day she told me, with most of the rest of the time spent on sleeping or some treatment or test they do to her.

She also can't walk still, and won't until her balance regains enough, which I don't know how long that'll take.

 

[ComeTurismO]

RPG Maker (by what I saw of it) has SNES-like graphics, very easy on the eyes. She's only on her laptop maybe an hour per day she told me, with most of the rest of the time spent on sleeping or some treatment or test they do to her.

She also can't walk still, and won't until her balance regains enough, which I don't know how long that'll take.

So, shes like.. cured from CF, right?

 

[Kinekto]

So, shes like.. cured from CF, right?

Answer from cff.org, as they explain it the best:

Does a lung transplant cure CF?

No. A lung transplant will not cure CF because the defective gene that causes the disease is in all of the cells in the body, not just in the lungs. At this time, scientists are not able to “fix” genes permanently (see gene therapy). While a transplant does give a person with CF a new set of lungs, the rest of the cells in the body still have CF and may already be damaged by the disease.

 

[WhiteMaze]

Fantastic news

So, shes like.. cured from CF, right?

I don't think that's how it works..

 

[Arizato]

Just found this thread and read through it. An emotional Roller Coaster to say the least. From reading about Xuphor's illness and the parents' reactions to mystery donor and the recovery. This thread has certainly given me back some hope for humanity!

To Kinekto: Would love for you to stay here after all this is over. You've been incredibly brave and supportive to your sister! I have great respect for you. I wish you the best of luck and happiness!

To Xuphor: I'm happy you changed your mind! Looking forward to that game of yours. You fought your illness and won! Very well done. You've been very brave in these bleak past weeks. I wish the best for you!

To Mysterious Money Donor: You're a wonderful human being! We need more of your kind in the world. You're awesome!

 

[JoostinOnline]

Does this mean her lungs could give out again?

 

[Naridar]

Does this mean her lungs could give out again?

Not because of CF, but sadly, transplanted lungs have a chance of failure over several years.

However, since CF is basically a defective gene that affects certain proteins and through them, causes the secreted fluid in the lungs (normally meant to equalize surface tension and catch polluting particles) much more mucous than normal, and thus lose function. It also often affects the pancreas as well, though it causes the most severe symptoms in the lungs.

 

[Walker D]

I liked the idea of a new productive thread. Hope she likes the idea.. ..this game can be a fun project that the forum can get involved in.

 

[lafleche]

It is like a lot of other nasty medical disorders (eg cancer): They talk in number of 'survival' years. For lungs 70% of the patients still have a good pair of working lungs after 5 years.
Kidneys are doing better (especially when the sick kidney stays behind) en skin transplants last for tens of years.

But hey... slightly more optimistic talk now.. medical science is progressing and new forms of treatment (like gene therapy, the use of stem cells, new medication) are being put in use as we speak.
Xuphor is still young and with the new pair of lungs has many many years to go.. Carpe-diem!

 

[Kinekto]

..this game can be a fun project that the forum can get involved in.

That's what I was thinking to, but I don't know much about games. I'll wait to see what a moderator says before presenting her the idea though, as I don't know if they'll agree to the whole "unsticky this thread and sticky her new game project thread" concept I came up with.

And hey, if her new gameplay mechanic she's coming up with is good enough, maybe she can get a kickstarter going, get the Cystic Fibrosis Foundation involved, and actually make a real game about the terrors of CF one one day, without needing to use RPG Maker or the like. If that happens, it'd all be thanks to GBATemp if the mods approve of it.

 

[Walker D]

Sure. Good luck on leading your idea forward, its a good one.
I used to make some games on RpgMaker2000 (rm2k) back in the day too. It was fun.

I recommend the software GraphicsGale for drawing/remaking graphics, in case she doesn't want to use only the defaults. You can download the free version and give it to Xuphor use for her game (in case you need the full version, PM me).
Maybe I can help on her project in the future, who knows ...I'm interested in messing with games again.

You're a good sister to Xuphor congrats for all your efforts

 

[chris888222]

... I seriously think it's about time for a change in thread name.

Best wishes to xuphor and the family.

 

[ComeTurismO]

Answer from cff.org, as they explain it the best:

..Oh
WhiteMaze
I'm only 13!