After meeting with our local doctor on the 25th, they explained it was a inflammation in the liver..
Pittsburgh called today and stated that there was no change since the results in January and he continues to be in mild rejection.
The good news is there is NO change …the others news is ..there is no change
There will be a medication change as they will add another anti-rejection medication. It is a bit concerning as this specific medication was stopped for his rising EBV levels.. but they told me that they will keep a good eye on it.
Of course my concern now is the increased immune suppression Lennon has to handle and with fall around the corner and with school in session…well it worries me a bit
I shared this today and was told everything will be alright.
Of course it .. it is what I tell myself but I can’t help but feel worried and a bit of heaviness in my heart.
I think it is easier to understand when you walk this fine line of life and death and immune suppression and the continued risk of his body rejecting the liver.
Frankly, it scares the hell out of me.
And no matter how much of a good face I put on every day and how much I live in the state of being grateful and optimism .. this is hard! I will continue to put my faith where it needs to be and know that in the end everything is always as it should be in every single moment.
I hope that his body is strong enough (he LOOKS amazing) to handle the additional medication.
There will be no biopsy for another year but to say that you life is a normal life.. well its anything but that – it wouldn’t be our life!