Wednesday, November 12, 2014

They're back....

Ric had his follow up appt today. When Dr. Eslin saw him he said "it is short of a miracle that you have been off of meds for 7 months!". He then gave me that look...yeah, that one that said "wait for it" and then the words came out of his mouth "we have seen up to 6 months off of meds. Very, very rarely a year off of meds. It is time to watch how his body will behave." 

For a split second I thought maybe Ric can be the exception to the "rule"? But I knew that shit was coming down. I have basically known for two weeks now! He hadn't had any bruising, bleeding or petechiae. However, his eyes have been kind of full of little blood veins every other day or so, which is something that happened at the beginning of our Evans' journey. 

Hours later I get the dreaded call! Let's be real! Even when they call with good news, seeing that number on my caller id always makes me stop breathing for a moment. White blood cells are good, anc is good and platelets are low. 60,000 platelets she said and my heart sunk. Coombs positive (this is the test they do to ck if the evil antibodies are back)..fuuuuuuuck!!!! No meds for now, Dr Eslin wants to draw blood again in two weeks and see where we stand. If symptoms arise before two weeks, then we go. 

In my head this sounded like "they're baaaaack!" from Poltergeist. Just like that! 

I am thankful that we got 7 months of peace. I reminded Ric about this. He has been a bit in shock and awfully quiet this afternoon. He said "I don't want to be the sick kid". These are the moments where I truly don't understand where I get the strength to say "You are not your disease. Your disease does not define you. HOW you deal with it does! So, chin up! You know this is something that will come and go. You will have some good months and some challenging ones. It is what it is. We will deal with what comes."

 I can't even find the words to explain how this makes me feel. Sometimes I see moms on Facebook losing their minds over a simple cold. Don't get me wrong, thank God they are only dealing with a cold and no one wants to see their child suffering! But I can't help but to think "try that a million times worse and with doctors really not knowing how to treat it." I don't mean to sound like an insensitive bitch, but I feel like one thinking that.

This time I feel like we know what we are dealing with. Now, I know chemo is a real possibility again. Now, I can somewhat mentally prepare myself for that because sitting in that room is NO FREAKING JOKE! Now, Ric knows what to expect. Now, Ric has a reminder that yes this is here, this is real and he has to deal with it again and again and again. Now, we know the walls will tumble, but they won't fall.