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Old 11-04-2012, 02:55 PM   #31
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Re: Send good vibes

Wow, gone camping for a couple of days and look what I miss! Sorry to hear it Jamie (not sure he's gonna read any of this for awhile though). I'm on board with trying to help however we can. Wow, this sounds pretty dang serious.
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Old 11-04-2012, 08:17 PM   #32
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Re: Send good vibes

Dang...prayers going out. Been gone off site for a couple of weeks and missed a lot apparently.
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Old 11-05-2012, 08:08 AM   #33
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Re: Send good vibes

Monday morning update... Jamie is still doing his part. It is a heartbreaker that Suzann can't fix him all by herself.


"Dear friends. Jamie is still very sick and I need help. Please share this with anyone who might be able to help. I am working on a rare disease lead called Hemophagocytosis syndrome. It is mostly in kids but adults might have it too. It may be virally mediated. I am looking for successful treatment protocols. Any good researchers out there would be really helpful. One hallmark sign is the very high ferritin level. Over 10,000. His was 33,000. Also look into HLH too. Thanks. Much love. Your prayers are helping."
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Old 11-05-2012, 08:42 AM   #34
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Re: Send good vibes

I wish I knew something, anything, that I could do to help. Good thoughts headed their way.


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Old 11-05-2012, 02:34 PM   #35
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Send good vibes

He'll make it through. I know he will.

I copied his wife's post above and posted it on my FB page.
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Old 11-05-2012, 07:20 PM   #36
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Re: Send good vibes

Hope Jamie is doing better real soon. Good vibes sent!
Miss his input to the forum.
I was glad to meet Jamie at the Hungry Valley SMB gathering and have him ride with me on the 4X4 outing.
MORE GOOD VIBES
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Old 11-06-2012, 04:48 AM   #37
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Re: Send good vibes

I think most of us have gotten some positive input from Jamie!
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Old 11-06-2012, 05:23 AM   #38
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Re: Send good vibes

Prayers from The Ning and Rob
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Old 11-06-2012, 09:00 AM   #39
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Re: Send good vibes

No news this morning so far... maybe that's a good thing. I do know that Suzann has been receiving contact info for Hematologists (blood specialists) from around the country, including some pm's from the forum through me. I'm sure that all of the inflow is helping them, especially her.

All I can say to them is: Grab a root and growl!
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Old 11-06-2012, 01:24 PM   #40
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Re: Send good vibes

Good update, Brother Jamie is still growlin'!

"Hi all. Thank you for all your healing thoughts and prayers. I've written an update so you knew what was going on with my dear Jamie.

He is stable for now. He had a slight fever last might that he broke by himself. We are waiting to see how his bilirubin is, needs to decrease. He's not in imminent danger right now. Still bleeding some but less. Still in a coma. Hoping he starts to wake. His kidneys are very weak and everytime they try to put him on dialysis his bp drops. So they are going to put him on a continuous slow dialysis machine. It goes all the time instead of for 3 hours. His liver, kidneys and platelets need to recover from whatever the problem is. Unfortunately, they don't know yet...the cause and he's too weak for a liver or bone marrow biopsy. The thing I need most today is for his bilirubin to start coming down, his kidneys to start coming back online and of course for him to wake. Thanks for your love. Suzann"
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