STARTING NEW TREATMENT

Johnny is scheduled to start the new AML protocol today.  Overnight his white blood cells jumped from 100 to almost 200 (AML takes over the WBC's), so everyone is very anxious to start chemo ASAP, most of all Johnny.  He is in a tremendous amount of pain -- because his WBC's are cranking out in record numbers, he can feel it all over his body.  As his WBC's increased, so has the pain, he can't eat because of the excruciating pain in his jaw -- he can't open or close his mouth, it hurts to talk, sit up, lay down -- even more when I try to help by picking him up.  

He whimpers as he sleeps too -- could be due to pain, but when you wake him and ask, he says he doesn't have any.  I asked if he has nightmares, or if he can tell he's whimpering, but he says no.   That part breaks my heart -- to hear him in so much pain and to see him frown as he sleeps -- it's awful.  Last night it was the loudest I've heard (he did it with the bacterial infections) so I crawled into bed with him and whispered stories to him about when he was a baby, the things we will do when he's outta here -- even though he was asleep I like to think he heard me.  It really didn't stop him from moaning but it made me feel better.  Joey and Sophie have never seen/heard him like this so they were very worried about him too.

His platelets are extremely low, so the inside of his mouth and nose seem to be 'weeping' blood. The AML not only cranks out WBC's, it also eats up platelets and/or stops his body from making them, which seems like he's on a 24/7 platelet drip to keep them at a decent number (20ish).  

Because of his high WBC's and chemo starting today, the decision was made to go to ICU for observation while the chemo is running.  As the chemo attacks the WBC's something called 'licing' can happen, it releases the chemistry in each cell, possibly making him have too much potassium, sodium, chloride,  calcium and/or phosphorus -- things that could really screw up his heart, kidneys and liver. Having too many white cells can also make the blood 'thick' and form clots.  With that said, being in ICU isn't a bad thing -- 

Once the chemo has been hanging for a while I will update more...