November 18, 2014

• Spinning

  Today was Joshy's Cancer Center checkup day.  We have had better appointments...

  ~ Out of whack kidney functions are further out of whack.  His BUN levels are the highest they have ever been.  His sodium levels are low.  His potassium level is edging upward to the danger zone - the zone that landed him in the hospital 3 different times during the spring.

  ~ Platelets, continued their decline, dropping almost in 1/2 again.  In the past month they have gone from 90,000 to 29,000! (90,000 is about 2/3 of normal).   10,000 puts us in the need a trasfusion

  ~ Neoral (cyclosporine) levels were at 240... optimal levels are between 100-150.  Cyclo is a nasty drug.  It is known to cause kidney & liver damage, especially if it goes above the optimal levels.  BUT it is the drug that is saving Joshy's life, when it isn't trying to kill him.

  There are 2 likely possibilities of what is going on with the platelets...

  1. The Aplastic Anemia is becoming  active again.

  2. The kidney problems are causing the platelets to drop.  This is the most likely of the 2, we hope.

  BUT

  Because the kidney are not working well, they are not getting rid of the toxins in the drug.  These levels are building up in his blood .   The higher drug levels are in turn causing more kidney damage... which is causing them to lose more function.  It feels like we are in a death spiral.

  The doctor is reducing the drug dose in hopes of slowing/stopping the downward spiral.  We are also back to weekly checkups.  Thankfully, the cancer center doctor is saying we can alternate weeks between the local hospital & the cancer center.

  The words - hospitalization AND transfusion also came up today.  If levels do not stabilize by next weeks appointment we could well be looking at another club med "vacation".  The doctor did say that if a hospitalization is needed that we could chose between our local hospital & the cancer center.  The doctor will be emailing our local doctor with details of what is going on.  I hope the local doctor will consult the kidney specialists (same hospital).

  In the mean time, we watch, wait, & pray.  We will head back to the cancer center next week for a checkup.

  Please pray!

  

  • 5:54 am
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