Weary

Weary, that's how I feel today.  I feel weary from trying to pre-qualify for a marathon I don't really want to run.

The MRI this morning showed an increase of fluid in the subdural space of Jonah's brain.  It is in a similar space to the epidural hematoma that he had immediately after the first surgery, but it is now subdural and unrelated to the first (or second, which was in a totally different area).  The medical team is struggling to find the pressure balance for Jonah.  They know that he needs help draining his excess cerebral spinal fluid (CSF) or he'll end up with hydrocephalus again, but they know if they drain too much, he ends up with hematoma.  Clearly we haven't found the right balance yet.  They have again adjusted his shunt setting to reduce the amount of CSF drainage and we will do another MRI tomorrow morning to see how things look and if the adjustment was adequate.  If not, another surgery is not ruled out.  It's hard to see the pained look on the medical team's faces as they have to walk this road with us.  I hate to see their sympathy but am glad that we're more than just a case to them.

This development sets chemo back at least a day, maybe longer.  Until neurosurgery clears Jonah, he won't be allowed to start chemo or any rehab outside of the hour or so of combined OT, PT & speech he receives in hospital.  So here we are, weary from our many encounters with neurosurgery, waiting to start the hard marathon of chemo and rehab, and we just can't seem to qualify.  It's hard to want to qualify anyway, who really wants 6-9 months of chemo and a hard rehab road?  I've never been a real runner, so I don't "really" know, but from a brief running period I remember using small markers to keep going, the next mailbox, the next tree - really anything to move one foot forward at a time.  I guess that's where we are now, looking for the next mailbox, the next tree - the next therapy, the next imaging - one step at a time.

In a story that may seem short on good news, last week a baseline auditory test was preformed which is needed pre-chemo.  That test indicated the possibility of right sided nerve/hearing damage from everything that's gone on.  This morning a more advanced test is being conducted and so far the results seem promising.

One step at a time friends, one step at a time.