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Forum: Children with Special Needs

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  #1  
November 24th, 2009, 09:04 PM
docsmomma's Avatar Platinum Supermommy
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I got the nurse to read the report to me today, over the phone. it doesn't tell me everything but it tells alot.

First, what we do NOT know:
*We do NOT know if he is in remission yet
*We do not know if his lungs are clear yet
*We do not know what caused the issues with his liver still
*We do not know if we can turn in the oxygen tanks
*We do not know if we are going to maintainance or repeating Salvage

now for what we DO know:
*We do know that his lungs are improved with a few small areas of possible disease, possible scar tissue... smaller than last scan
* We do know that all air filled cysts have resolved
*We do know that the mediastinal mass in his chest is gone
*We do know there are no lesions remaining on his liver
*We do know that his intrahepatic biliary dilation is stable.

As for the unknowns, I will know more tomorrow afternoon. Not sure if I should be excited and nothing else or also frustrated. Right now I feel frustrated.

Tomorrow we will find out if prognosis remains at 30% or if it goes down to 10% (maintenance is 30%, repeat salvage is 10%). We find out if we spend Christmas in the hospital or have a chance to be home.
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  #2  
November 25th, 2009, 05:58 AM
Ditzzy's Avatar Stupid Lamb;)
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I'm remaining excited! There are some good things in those results. I can't wait to hear what the Dr says.
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  #3  
November 25th, 2009, 06:24 AM
iamkc's Avatar Platinum Supermommy
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I understand the hesitation in being excited, but OMG! some of that news is SO much more than they gave you hope for! I'm thrilled for Joey-and you guys! I'm going to remain hopeful, since I'm sure you're doing enough worrying for him. Really, that's great! I have everything crossed that Joey's official scan results come back saying that you can stay home for Christmas!
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  #4  
November 25th, 2009, 07:12 AM
quietsong's Avatar Just Another Slacker Mom
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Location: Missouri
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Ditto!!! I can definitely understand wanting to hold your breath still, but I think there are a lot of positives in there so far. I'm going to be excited for you, and plenty hopeful!
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  #5  
November 25th, 2009, 08:34 AM
docsmomma's Avatar Platinum Supermommy
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I am going to ask the doctor for a PET scan. Its the only safe way to determine active disease or scar tissue.
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