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Forum: Children with Special Needs


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November 24th, 2009, 10:04 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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November 25th, 2009, 06:58 AM
Ditzzy's Avatar Stupid Lamb;)
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Location: OH-IO
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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.

Thank you, tasha_mae, for my siggy!
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November 25th, 2009, 07:24 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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November 25th, 2009, 08:12 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!

Visit My Blog, and come join me at the JM Blogs!
Thank you Jaidynsmum for the siggy!
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November 25th, 2009, 09:34 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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