Topic: Another ?
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  #17  
April 28th, 2009, 12:13 PM
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What really bothers me lately is people hear that Joey's on "maintenance" and think it means remission. They think all is well and its NOT. There is still a mass. There is still active disease, but it is improved. And the fact is, there is really no true remission because remission means the disease has left and with LCH kids the disease itself NEVER leaves. It is always dormant in his body when it is not active. And when we started this whole journey I was the one who was told "80% of kids respond to treatment but he is at higher risk for not responding because of his age and the organs involved". Yet everyone else was telling me he would respond and I knew he might and might not. And now I know there is a 46% chance that once we force this disease to no Active disease it will reactivate. I want to cling to the 54% chance he will stay but I have to be vigilant to remember the 46% chance it won't. And the lung issue. No one gets why i worry about his lungs ALL THE TIME> HELLO people, he had disease ON HIS LUNGS, it nearly closed his airway. Now he has airfilled cysts on his lungs. I don't even KNOW what this means for his future. So excuse me if I choose to panic if he seems to have a cold or if there is excess ear wax (another sign of active disease). Excuse me if I worry about how much he drinks and eats and what his poop looks like because he could get GI involvement, he could get Diabetes Insipidus, he could get C-Diff infection. Pardon me if you want to believe everything is rosy and perfect and that i am an overprotective mom who is jumping at everything. I am doing the only thing I CAN do to make sure that Joey can be declared no Active Disease AND STAY THAT WAY.

OK, I've obviously been carrying that around for a while...
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