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Old 02-01-2013, 02:34 PM   #176 (permalink)
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Sorry to hear, hoping everything gets better. There's a website called caringbridge, not sure if you've heard about it or alreadfy said anything about it.

It can be a journal or helping tool to be in contact with other families dealing with related problems.

A child at my wifes church is battling Cancer for almost 3 years now and Im sure your child will be a fighter to.

"Kirin was diagnosed with stage 4 Neuroblastoma on 6/16/10 finishing treatments in Nov 2011. He remained Ned till his relapse on 8/16/12 and is now fighting Neuroblastoma a 2nd time. " CaringBridge / Kirin Brogan / Welcome
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Old 02-01-2013, 05:16 PM   #177 (permalink)
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Glad you got some sleep. Prayers are with you guys. I have the entire family praying for Connor!

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Old 02-02-2013, 12:45 AM   #178 (permalink)
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praying for you, your family, and your son. hang in there
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Old 02-02-2013, 02:37 PM   #179 (permalink)
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Ready for a couple more of those "good" days .. Struggling a bit as of late ... Doing okay, stable . Smiling alot this morning . Just off, not himself, labored breathing and fussy . Tired and grumpy myself . It's weird when time stands still for soooooo long . Day 20 . I remember 3 weeks ago (before ICU) I thought man this is gonna be a busy week ... Didn't do any of it, and barely remember what I thought it was I "needed" to do .
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Old 02-02-2013, 08:56 PM   #180 (permalink)
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Old 02-02-2013, 10:33 PM   #181 (permalink)
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It is difficult, I will admit, to think but to "normal" times during times of distress/pain/etc. That is why I've come to believe we should never take a single day for granted as humans. Life is so fragile, and so so so quickly things can completely change. We're all hoping for some good days for you, too. Stay strong for that little fighter you've got. Thoughts are with you.

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Ready for a couple more of those "good" days .. Struggling a bit as of late ... Doing okay, stable . Smiling alot this morning . Just off, not himself, labored breathing and fussy . Tired and grumpy myself . It's weird when time stands still for soooooo long . Day 20 . I remember 3 weeks ago (before ICU) I thought man this is gonna be a busy week ... Didn't do any of it, and barely remember what I thought it was I "needed" to do .
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Old 02-03-2013, 09:30 PM   #182 (permalink)
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Hey man I'm real sorry, thoughts and prayers out to your family. I'll be following for updates on him.
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Old 02-04-2013, 12:32 PM   #183 (permalink)
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Literally just heard a doctor say we could be here up to 8 more weeks . At the least a week and a half ...

On another note ... Got some sweet "rally beard" action going on . I have never not shaved this long ... 23 day beard is quality beard . Wifey says at least control the neck and cheek beard ... Thats not how this beard rolls though ... All beard, all the time . I will shave when buddy gets home

www.facebook.com/prayersforconnor

Having a good day . Happy , Smiles , and willing to Babble . . . Babble on good sir
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Old 02-04-2013, 11:59 PM   #184 (permalink)
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Keep this up....he needs out support.

Thoughts remain with you! Stay strong! Bet that rally beard is looking mighty fine right about now...
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Old 02-05-2013, 05:02 AM   #185 (permalink)
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Still here everyday checking in and including you in my prayers... stay strong..
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Old 02-05-2013, 11:07 AM   #186 (permalink)
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Goal for the day ... Cut the hair, dont touch the beard ... AND Connor's prayers page is 62 "likes" away from 3000 ... Like his page and Share .. Lets get past 3k today . I want another tattoo, but that last chest piece was a doozie . Earl from Body Armor Tatttoo (kalamazoo) freestyled that all on my chest . Gifted with the gun ... Then went pro-bono on me . Said he was honored to do it ... I have literally been blessed with kindness and generosity during this . Along with the support and kind words, I feel truely blessed during the hardest time of my life . We have along road ahead of us, with a very cruel and inevitable outcome that we all still cringe and cry even thinking about . I cannot begin to thank every one enough . I read every word and take it all to heart . Thank you
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Old 02-05-2013, 11:24 AM   #187 (permalink)
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Agreed...don't touch the beard! I trim it but that's it. I'm in my 12th year and my son is cancer free so no way I shave it off!
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Old 02-05-2013, 12:16 PM   #188 (permalink)
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chest tubes are no joke man. Worked in a hospital as a transporter, and nothing made me cringe more aside from one lady that had a huge wound-vac on her abdomen (looked like she was being held together by black duct-tape. There's just something that makes me woosy knowing that a tube is going straight into the chest area and draining fluid/air.

good luck to your son.
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Old 02-05-2013, 09:20 PM   #189 (permalink)
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Just watch the first few minutes at least ...

Our Life With SMA ~ UPDATED VERSION - YouTube
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Old 02-05-2013, 10:11 PM   #190 (permalink)
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Keep on fighting on Connor and team!

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Old 02-05-2013, 10:26 PM   #191 (permalink)
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Just watched the video. I am so sad for you but I will not give up hope. Continuing with prayers and positive thoughts for your beautiful baby.
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Old 02-05-2013, 10:32 PM   #192 (permalink)
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Hope he gets better and hope you guys wont worry!
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Old 02-05-2013, 10:45 PM   #193 (permalink)
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I love the picture of your son that is on the Facebook page. He looks very stoic and brave. I have spent plenty of time in the hospital with a good friend of mine listening to the doctors talk about percentages and chances, but always remember that your son is much more than a statistic and there is absolutely always a chance. Praying for you and your family.
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Old 02-06-2013, 01:33 AM   #194 (permalink)
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Sweet tat. Should go all out with a rally thong or something hah.

Here's hoping to good/great news soon.
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Old 02-06-2013, 01:58 AM   #195 (permalink)
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I don't have the words man, I can't begin to imagine.

For what it is worth, I am pulling for you guys.
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Old 02-06-2013, 02:04 AM   #196 (permalink)
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Man, I can't start to imagine what your going through. Prayers with the little man! Stay strong brother
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Old 02-06-2013, 02:59 AM   #197 (permalink)
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My thoughts and prayers go out to you and your family.
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Old 02-07-2013, 10:01 AM   #198 (permalink)
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Bump to keep this at the top.....
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Old 02-08-2013, 12:16 AM   #199 (permalink)
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Just want to wake up . Can't believe this is even real . Three and a half weeks blur into a day . I know, I knew, and understand . Just never wanted to believe . So scary . The inevitability of the situation is not meant to be known . How is there not even treatment ? Nothing . A choose you level of machinery type choice . No one should ever have the experience of such decisions, conversions . He is so weak, yet so full of life . Insane . The worst . Day 26 tomorrow ... but who's counting ? LoL . I am more than full of hope and I am building a army of prayers and positivity ... believe me . But I cannot walk into this blind . I hate this ... on another note . I have three tickets to the Pacers vs Knicks game coming up here in Indy that I got for Christmas . Not sure if we will get to go . Wifey says I should go without her . Not sure that's the best idea
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Old 02-08-2013, 12:20 AM   #200 (permalink)
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Stay with him! You need him and he needs you! What's a basketball game anyways!
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