NOT RESPONDING

Yesterday afternoon our doctor pulled me outside to talk to me about Johnny's counts. His WBC numbers are almost doubling every 12 hrs and his blast count is bouncing between 50-80%. Her thoughts are either he possibly has a combination of AML and ALL or he just isn't responding to treatment. For a while everyone was hoping the increase of WBC's and blasts were his organs clearing out all of the blasts cells that have been floating around, but if that were the case the numbers would be decreasing each day -- not increasing.  She said they were going to draw new labs for testing and determine if the blasts are still AML or something else and we should know more later in the evening. 

About 8:00pm last night they came back to check on Johnny and tell us of the preliminary results. First the results from the LP -- the WBC count jumped from 2 last week to 13 and there were also 330 RBC -- neither numbers are even close to normal (which should be zero). ALL morphing into AML is extremely rare -- Johnny might be the first kid at TCH diagnosed with it  -- and even more rare is AML found in the spinal fluid -- which he also has.  Luckily (I guess) he's had 3 LP's which his spinal fluid is removed and tested for cancer and replaced with chemo. Oddly, even after three doses of chemo the cancer numbers still continue to climb.  No one knows why.

Then we started talking about his peripheral blood counts.  From the labs ran earlier that afternoon (FISH and cytology) every cell still looks like AML with no signs of ALL.  Kind of good news -- that it's just one type of cancer -- but unfortunately that cancer is still AML -- the toughest leukemia cancer to beat and it's increasing by the hour. My heart is broken.

Dr. Kilburn said that she and all of the AML experts (Dr. Dryer, Margolin, Stueber -- and Dr's. from around the world) were going to meet this morning and try to come up with a plan hopefully by this afternoon.  Right now Johnny feels like shit and I can tell he has cancer again.  We haven't said anything to him yet about what we know because nothing is confirmed one way or another and until we know facts -- there is no reason to make him worry about the 'what if's' -- that's my job.

Last night was the first time I thought Johnny might not get better.  No matter how many times before he had a life threatening infection or cancer, I knew in my heart he would be okay.  With this new development, I'm not sure how much more fight he has left.  He is so weak and tired -- yesterday when I was helping him in the restroom and I could see the pain and anguish on his face (of which of course he says he's fine) I wanted so badly to ask him if he wanted to still fight or if he was just to tired to continue.  But I didn't. I am terrified to verbalize anything of that sort and even more terrified of what his answer might be. 

Hopefully this afternoon we will get some sort of promising news about treatment -- when we do I will let you know.

As of right now, Johnny is not up for any visitors (we even had to send Sophie and Joey to Mike's mom's).  The noise and action is just too much for him right now, but when and if he's up for visitor's we will let you know.