Plus-Sized

Wedding on hold...

Last night was the night from h*ll... Can I please ask everyone to keep FI's daughter in your thoughts and prayers.  6 months ago she began to have migranes and nose bleeds for no apparent reason.  After to many tests, she was diagnosed with gamma ray syndrome; her immune system has shut down now.  The only known treatment is gene therapy which will replace the affected gamma gene with a functioning one.  In 1999 the first candidate for this therapy died 4 days after beginning the treatment; then in 2002 the little boy survived but now has to live 100% in a completely sterile "bubble".  Without the treatment we will have to sit around and watch her die.  With the treatment she could either make a full recovery (about a 30% change) or it will kill her.  Sarah just turned 6 last week.. RIght now the plan of attack is finding a hospital that offers this treatment (currently we know of three one in PA, one in NC, and John Hopkins)... I am hoping and praying so much that she pulls through this and we can all hold together as a family.  If you don't see me on here much and want updates please feel free to email me (yahoo: JMKeenan), I deal with stuff by working so I will be spending a lot of time in my office and the rest of the time commuting back and forth to see her. 

Thank you so much in advance!

Re: Wedding on hold...

  • I am so sorry to hear that. :-( You and your family will be in my thoughts!!! Please remember we are always here to listen!
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  • I'm so sorry.  I will definately put her and you and your family in my thoughts and prayers. Praying for a speeding and complete recovery!

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  • I am so sorry you are going through this.  I hipe that she is able to stay strong and endure.
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  • That is very unfortunate. I sincerely hope she's part of the 30% that make it through.

    However i don't know if your FH knows you posted this, if he did/does i would imagine he isn't/wasn't pleased. Some things shouldn't be posted on and online message fourum.
  • I am so sorry to hear that, she will be in my thoughts and prayers. I will also put her on my prayer list at church. That is so sad for her and for yall, I pray that she has a wonderful recovery.
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  • I am hoping for the best for all of you. Please keep us updated. 
  • I am so sorry to hear that. It breaks my heart for you all to have to go through this. Know that we are here and you are for sure in my thoughts and prayers!!
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  • Very sorry, children are so very precious.  Good thoughts only!
  • Very sorry for what you are going through.  will keep you in my thoughts & prayers.
  • oh gosh... that is horrible.... I will pray for her and keep you all in my thoughts. 
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  • I understand the safety aspect of don't let your true identity out, but I don't see what the big deal is. If she finds comfort in sharing her challenges with complete internet strangers I'm not going to tell her she can't or shouldn't.  Perhaps a message board about the disease would be a better place to go, but they are all still internet strangers as well.

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  • I'm so sorry you have to deal with that.  I know how rough that syndrome can be.  T&P.
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  • I am so sorry.  I have a 5 year old granddaughter and I can't imagine how devastated I would be if it was her.  I sincerely hope she as a full and quick recovery and can get back to being a normal kid in the near future.
    Please come back and talk to us if you need a distraction.
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  • In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/special-topic-wedding-boards_plus-sized_wedding-hold?plckFindPostKey=Cat:Special%20Topic%20Wedding%20BoardsForum:973cdc6f-961e-4fb0-a628-bef2bb559697Discussion:6a29e28b-0700-409e-872b-8378151d7ab8Post:95e78bae-4631-4541-8da9-b1675081d8f1">Re: Wedding on hold...</a>:
    [QUOTE]That is very unfortunate. I sincerely hope she's part of the 30% that make it through. However i don't know if your FH knows you posted this, if he did/does i would imagine he isn't/wasn't pleased. Some things shouldn't be posted on and online message fourum.
    Posted by rtzrill[/QUOTE]

    Yes my FI knows that I posted this he was standing right there with me.  He is letting me deal with stuff on my own.  You know I hope this is something that I would not wish on my worst enemy!  I buried one child almost 7 years ago and I shut people out in that recovery and they were trying to prevent me from doing that again this time.  I thought maybe if i turned to a virtual world that people wouldn't judge or be snarky, because if I wanted that trust me I would deal with my family and their bs. 

    As I said before I hope you NEVER have to go through this!  I am currently reverting to my little shell of shutting everyone out.  Good bye everyone and good luck with your weddings/marriages!
  • In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/special-topic-wedding-boards_plus-sized_wedding-hold?plckFindPostKey=Cat:Special Topic Wedding BoardsForum:973cdc6f-961e-4fb0-a628-bef2bb559697Discussion:6a29e28b-0700-409e-872b-8378151d7ab8Post:d7989cef-92b1-4b50-9094-2d3a346cc458">Re: Wedding on hold...</a>:
    [QUOTE]In Response to Re: Wedding on hold... : Yes my FI knows that I posted this he was standing right there with me.  He is letting me deal with stuff on my own.  You know I hope this is something that I would not wish on my worst enemy!  I buried one child almost 7 years ago and I shut people out in that recovery and they were trying to prevent me from doing that again this time.  I thought maybe if i turned to a virtual world that people wouldn't judge or be snarky, because if I wanted that trust me I would deal with my family and their bs.  As I said before I hope you NEVER have to go through this!  I am currently reverting to my little shell of shutting everyone out.  Good bye everyone and good luck with your weddings/marriages!
    Posted by 1020Bride[/QUOTE]
    Ritzy's post may have been a little snarky, but I think she was genuinely making sure your FI is OK with you posting such personal information on a public message forum. Anyone can view this forum, whether plus sized or skinny, male or female, TK member or not, etc. It is literally open to the entire world. I know that for my H, he would definitely not be OK with me posting that kind of information about him or his family. I imagine Ritzy knows her FI would feel the same way, which is why she posted what she did.

    It's your choice if you want to shut everyone out; I'll be honest and admit I don't recognize you from any of your posts before yesterday's popular "Am I being selfish", so I won't notice if you GBCK (Goodbye Cruel Knot) or not. The ladies here are overall quite supportive so it's up to you if you want to use that or not.
  • In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/special-topic-wedding-boards_plus-sized_wedding-hold?plckFindPostKey=Cat:Special Topic Wedding BoardsForum:973cdc6f-961e-4fb0-a628-bef2bb559697Discussion:6a29e28b-0700-409e-872b-8378151d7ab8Post:79de1dfe-bd90-401c-adbc-bf75f572ff76">Re: Wedding on hold...</a>:
    [QUOTE]Oh my gosh. I cannot express how sorry I am. I have a dear friend who works in Pediatrics at Johns Hopkins. They are one of the best, if not THE best, research hospitals in the nation, especially when it comes to children.
    Posted by burntofferings[/QUOTE]

    I was going to say the same thing about JH.  Your FI's little girl is in my thoughts.  May your family find love, hope and strength during this difficult time. 
  • Oh Goodness! Keep strong! Your FI's daughter needs you and her daddy to be strong, itll make her strong. My prayers are with you and yours!
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