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05-14-2014, 08:13 PM | #1 |
SurveillancePort.com
Join Date: Feb 2007
Location: M.A.R.S. EVERGLADES ARMORY
Posts: 21,464
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Here's an amazing video.
Some production notes: Every May I create a movie-poster-style tribute to my son Armand's continued survival in the face of impossible odds. This time around I brought his sister Autumn-Rose into the fold and got ambitious with the above video . First off, eternal gratitude to Bill Ratner and Mary McDonald-Lewis, the original Flint and Lady Jaye, who generously donated their time and talent to bring life to a concept that seemed impossible when I came up with it, and delivered narration that succeeded beyond my greatest hopes. A few notes on the medical specifics within: Nothing in this video is exaggerated; it reflects the best of our knowledge of their current states, though "the best of my knowledge" would be interpreted as the knowledge of a dedicated amateur at best. Autumn-Rose is fairly seriously vision-impaired; she does, however, get around pretty well with her almost comically oversized glasses. (For those who know such numbers, her spherical rating is +9.75, which is well into the territory of "off-the-charts insane" in my book.) I don't pretend to understand the science of audiology well enough to give solid numbers on Armand's hearing. What I can say for certain is that he's lost more than half his hearing, maybe two-thirds, and hearing aids restore a significant chunk of it. You know, all this stuff and I didn't even mention that Armand does all this running, jumping, climbing and riding in ankle-high leg braces and derotational straps all the way up to his waist. The survival rate circa 2009 for stage-IV neuroblastoma was about 35 percent; it dropped to 8 to 14 percent if you had a number of special circumstances, all of which applied to Armand. He went through a number of clinical trials, including an experimental antibody which worked so well in trials that it quickly became the standard treatment and is expected to nearly double the survival rate to around 65 percent. This is based on the best of my current non-expert understanding of the science, so please don't quote me in your research papers. I do not exaggerate even slightly about Autumn-Rose and time and space — she's a walking reality distortion field. Sometimes I'll be looking for a lost thing for an hour and she will gingerly pull it out of a spot I KNOW I checked four times. The reason you see her plastic ninja sword in only a few shots is because it vanished from right next to her seat and couldn't be found despite my best efforts. I fully expect her to toddle in carrying it any moment now. "The Silence and the Darkness" is both appropriate and ironic; it reflects our running inside joke that the kids have one good set of senses between the two of them, and also the fact that despite their challenges, you would almost never tell. He can still hear me whisper "hey, want some ice cream?" across a room (I still have no idea how) and yet sometimes misses stuff that's sitting right in front of him. (The phrase "are we sure it's his ears and not his eyes that are the problem?" is a frequent one in our household.) He may not hear very well and she may not see very well, but they are anything but silent and dark. That's the thing about these kids -- no matter the challenge in front of them, they always seem to find a way to work around it! Thanks to everyone for all your support. Paul F. P. Pogue Katrina Pogue Armand Pogue Autumn-Rose Pogue |
05-14-2014, 08:35 PM | #2 |
The Man You Know & Love
Join Date: Feb 2009
Location: In The Middle of a Late Nite Crew Orgy
Posts: 28,242
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Umm...WOW!
Speechlessness. Encouragement. Humility. Determination. Will to survive my own problems. Lump in my throat. In awe. Teary eyed. Just a few of the feelings I'm expressing right now. |
05-14-2014, 08:40 PM | #3 |
SurveillancePort.com
Join Date: Feb 2007
Location: M.A.R.S. EVERGLADES ARMORY
Posts: 21,464
|
Quote:
Yes sir, that was me 5 minutes ago. Mr. Pogue seems like an amazing Dad. I hope word of the video is spread far & wide. |
05-14-2014, 09:52 PM | #4 |
Crimson Guard
Join Date: Sep 2011
Location: new jersey
Posts: 1,050
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This puts many things in real perspective. We often go about our lives bitching and complaining, and feeling so bad for ourselves. We become so obsessed and beaten by our stupid little problems, and its really ridiculous at the end of the day, especially when you see an example of these 2 children, and what they can and have overcome.
I almost feel ashamed when I think of how "stressful" life can be sometimes, but you truly learn how petty all this bullshit is when we are humbled by the strength, determination, and examples of these kids. This father should not be sad or angry, he probably feels blessed and gifted, and he is VERY LUCKY to be able to live his life next to these awesome kids and watch what they are going to become in the future. |
05-14-2014, 10:04 PM | #5 |
That's lo!
Join Date: Nov 2007
Location: Wa.
Posts: 31,050
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Now that it is on the front page just have to come back and say how totally awesome this is!
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05-14-2014, 10:11 PM | #6 |
Cobra Viper
Join Date: Apr 2009
Location: Under the motor pool
Posts: 339
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This brought tears to my eyes.
God bless you Pogue family, your children are beautiful and wonderful. I'm going to go give my own boys a hug now. Thank you for sharing your journey with us. Beyond inspiring. Yo Joe. |
05-14-2014, 10:31 PM | #7 |
Sith/Jedi Hybrid
Join Date: Feb 2009
Location: Middle TN
Posts: 3,197
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Thank you for sharing that with us.
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"I can't promise I'll try...but I'll try to try." BUY/SELL/TRADE: http://www.hisstank.com/forum/g-i-jo...ell-trade.html Feedback: http://www.hisstank.com/forum/buy-se...th-awgmon.html |
05-15-2014, 01:59 AM | #8 |
Freelance Operative
Join Date: Sep 2007
Location: Austin, TX
Posts: 634
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Its always good to see stuff like this. You are an awesome dad. I also know how hard it can get with someone in the family has cancer. My dad passed away about two months ago from cancer. Stay strong and fight on!
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05-15-2014, 09:25 AM | #9 |
Cobra Viper
Join Date: Jan 2009
Location: ohio
Posts: 138
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I rarely ever post stuff on this site. All I got to say is WOW. Great video and tribute to your awesome kids. I love the codenames. You should be one proud dad.
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05-15-2014, 11:24 AM | #10 |
Crimson lady of the Guard
Join Date: Sep 2008
Location: Somewhere out there
Posts: 13,754
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I love you Hun. That was jaw dropping. Those two little kids have one great dad. Purely a master made film by a great Father. I have tears in my eyes right now. Thank you for sharing this.
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