MrLuckey

Fire Marshall Ed
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One of my best friends just let me know that their 11 yr old son Jordan is back in the hospital and things aren't looking good again. Jordan has been fighting this for a long time and the Doctors are somewhat surprised he has lived this long. I don't recall the original diagnosis from years ago but he has a tumor on his optical nerve and another on his brain stem - both inoperable.

This is most of the e-mail I got this morning from Brad and Nicole:

Jordan is now at Children's Mercy Hospital. He is still having the low heart rate and erratic breathing and is having trouble keeping anything down now. His eye is very swollen and pressing in his brain. We ask for your continued prayers. Many of you have asked about sharing this info with others so they can pray...pass on, pass on...the more prayers the better!!!! Brad stayed with him last night and needed to be up every 15 minutes to put medication in Jordan's eye. His eye is not closing and we have to keep it wet. His surgeon would like to try something new and put him on a good dose of steroids. We pray this will relieve enough swelling that he could eat and close his eye. Children's Mercy is doing a good job of managing his pain, PRAISE GOD!!

On top of this Nicole's health (she is 35 yrs old) has been deteriorating over the last few years. The Doctors never seem to find reasons for this and suspect it's tied to stress etc over Jordan.

JORDAN Picture
 
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Chili

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That is something no child should have to face, and something no parent should have to see their child struggle with. Our thoughts and prayers go out to the family.
 

bsmith

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They got my thoughts and prayers to Ed!!
 

Jaybird

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My prayers go out to the family.
 

Tony Eeds

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Jordan and his family are in my thoughts and prayers.
 

dirty~d~

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Good thoughts going out to the little guy from here.
 

BSWIFT

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My prayers are with him and his family.
 

darringer

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Our thoughts and prayers will be with you.
God bless.
 

gnarlykaw

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Prayers go out to that brave young boy, his parents and to you Eddie, to keep the your strength going to help support them.
 

squeaky

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Oh, Eddie, that hurts my heart to read. My thoughts are with Jordan and his parents.
 

Vic

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Prayers on the way, Eddie.
 

Crispy

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My thoughts and prayers are with Jordan and his family and friends. Please keep us updated on his progress.
 
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MrLuckey

Fire Marshall Ed
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I got an update this morning, Nicole sounds like she has nearly given up hope this time...she keeps repeating that they are managing his pain well. I haven't talked to her on the phone yet - not even sure I could. I am going to try and call Brad tonight, sure as hell don't know what to say though. I don't even remember what I put in the original post but Jordan has never been able to do anything similar to sports etc. part of his skull is thin or soft and he couldn't stand any kind of blow to the head. When he was about 4-5 and this first came to light the swelling pushed one of his eys out of the socket and nearly killed him. The family is currently living in Enid Oklahoma - Brad is a Navy pilot (for about 15 yrs now) and they have been all over the place - unfortunatlely I haven't been able to see them as much as we all wanted the past few years. Anyway - thanks everyone!
 

MrLuckey

Fire Marshall Ed
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Today at 5:30 PM a neurosurgeon and a
ocular-plastic's doctor are schedule to perform surgery on tumors that they have said for the past years are inoperable. Jordan hasn't been improving and the swelling is pushing his eye out of the socket once again. They removed him from pain medication for about 24 hours as they didn't think he could handle any more, he is now back on meds and they are apparently working so at least he has some level of comfort again.

I didn't realize it but they are now in Leavenworth KS, Brad was able to get an emergency transfer (to be closer to his and Nicoles families) a couple of months ago when Jordan started going downhill again.
 

CaptainObvious

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What a handsome young man. Children have incredible resilience, able to handle bad news and endure pain beyond belief. Parents on the other hand, feel all of the pain and never forget.

Ed, your friends Brad and Nicole need your support now, more than ever.

Call them often.
 

MrLuckey

Fire Marshall Ed
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From Nicole just a little bit ago:

Praises and more praises!!!

Jordan is done with surgery. Everything went very well. God blessed our family with overwhelming support of our friends, church family and family. The swelling was completely relieved. The surgeon felt the surgery was much simpler than he had anticipated and has told us next time this swelling occurs he will not make Jordan wait so long or let him get as sick as he was this time. This is amazing news since this will be a lifelong battle for Jordan and more surgeries are expected from time to time. God blessed us with a wonderful hospital (Children's Mercy) and wonderful doctors and nurses.

Thank you for all your prayers. God is working in our lives and we know this experience has brought glory to HIM!!
 

Kav

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very coool :)
 

GETMETOCA

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squeaky said:
Oh, Eddie, that hurts my heart to read. My thoughts are with Jordan and his parents.

Ditto :( I'm relieved to see the surgery went well. Thank God.
 

Ol'89r

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That's great news Eddie.
 

dklink2000

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I hate reading threads like this, I want to comment but never know what to say as I have never had to go through anything like this personally.

I hope you feel better Jordan!
 

MrLuckey

Fire Marshall Ed
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From yesterday - I didn't get this news until this morning:

Jordan is back in the hospital (Children's Mercy). His eye began swelling again and he became sick, so they took him back this morning. He has been admitted, and is on much pain medication because the swelling is happening rapidly. They seem to think this time is different in that he is now having a true "bleed" -- (before, the swelling was lymphatic fluids -- this time it is filling with blood).

and then:

Jordan had an emergency surgery today (Sunday, March 5th)
afternoon. Same problem, much faster swelling. Praises for the doctor
being in town and everything working together for a needed quick surgery.
He is resting and eating in his room at Children's Mercy. Thank you for
your continued prayers and support. This is a difficult problem to
understand for everyone, including us.
 

MrLuckey

Fire Marshall Ed
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This is a website that details what happened when this was first discovered at age 4. The Harvard School of medicine actually put the details of his illness on their website. There are different colored tabs near the top that have all the different info.

LINK
 
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