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echo: survivor
to: Mark Hofmann
from: Ardith Hinton
date: 2014-11-27 23:52:10
subject: Childhood Leukemia... 2.

Hi, Mark!  Recently you wrote in a message to Ardith Hinton:

AH>  Bottom line is, my daughter survived leukemia at a time
AH>  when the odds were a lot less favourable than they are now.
AH>  And together [she & Bernie Siegel] inspired me to start
AH>  this echo years ago....  :-)

MH>  It is great that you did and took the initiative to learn
MH>  as much as possible on the subject.  Not all parents do
MH>  that.  Our doctors have even pointed that out to us.


         Yes, it seems to me that parents who do are able to work together
with doctors more effectively... and the good doctors appreciate it.



MH>  A good bit of the treatment is done at home with oral meds
MH>  that are time sensitive, have to be taken without food, etc,
mH>  things that as a parent, you need to be on top of.


         Uh-huh.  Oncology parents are a special breed, that's for sure! 
Years ago I joked that the oncology ward was the only one where adults had
to pass an exam before their kids would be discharged.  I was exaggerating,
of course, but not by much.  When our daughter stayed briefly in another
ward during treatment I marched up to the nursing station at 11:00 AM,
notebook in hand, to check her blood counts... as I had grown accustomed to
doing.  In 3B I'd have had to wait my turn, whereas in this ward it came as
quite a surprise to the staff....  ;-)



MH>  I always want to know as much as possible about everything
MH>  and how everything works.


         That's my reasoning style too.  I was glad I asked
"Why?" when a nurse told me during the initial stages of
treatment that band-aids should be removed within 24 hours.  (Germs like
warm, dark, damp places.  Okay... I get it.)  One of our roommates had to
stay an extra two weeks because her mother did not make any mental
connection between band-aids & surgical dressings, so when the staff
improvised something with tape & gauze she waited for somebody to tell
her what to do.  There again, a bit of initiative goes a long way....  :-)



MH>  BTW, we get a two week break from treatments and then
MH>  start Interim Maintanence II possibly next week if counts
MH>  are good.  That is the final phase before Maintanence,
MH>  when things should start getting more normal.


         I expect so.  Thinking of you, even if I'm slow to reply....  :-)




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