Subj : Childhood Leukemia...  2.
To   : Mark Hofmann
From : Ardith Hinton
Date : Fri Mar 02 2018 02:36:56

Hi again, Mark!  My apologies for taking so long to finish this chapter:

MH>  [He] is on the "Standard Risk B-ALL".  There is Induction,
MH>  Consolidation, Interim Maintenance I, Delayed Intensification,
MH>  Interim Maintenance II, and then Maintenance.


          Yes, "Delayed Intensification" sounds familiar.  I had forgotten the 
terminology because it's been awhile.  If that's where you get dexa(metha)sone 
instead of prednisone... the food cravings really kicked in there as far as we 
were concerned!  Our daughter was constantly hungry but had little interest in 
anything except milk, pork chops, and nine-grain bread with strawberry jam.  I 
remember thinking to myself "Well, it's a balanced diet... sort of... and it's 
just for two weeks."  The net result was that she was the only kid in the ward 
who didn't seem to need a zinc supplement.  (Details on request.)  My point is 
that even a kid who's supposedly mentally handicapped may know more that we do 
at times because we're not wearing their body, or taking the same drugs.  :-))



AH>  It sounded to me as if he might be getting more treatment in
AH>  the hospital, and less at home, than our daughter did. But I
AH>  remember one phase in which we had to go to the hospital every
AH>  day for a week or two.

MH>  We were going to the hospital once every 7 days.  Right now,
MH>  it is once every 10 days.  It varies - and there is a part where
MH>  it is every day for 4 days in a row - two weeks in a row.


          That's the part I was thinking of.  Maybe it was five days in a row, 
but it was certainly more than four.  I remember going to the ward on weekends 
for injections of something or other because the clinic wasn't open.  In those 
days the timing was very strict... if you were due to start something xxx days 
after the onset of treatment, that's what you did.  Thus I took the liberty of 
assuming, since our uplink's system was down for a few days & I didn't want to 
lead the witness, that "next week" didn't necessarily mean "next Monday".  ;-)



AH>  With umpteen different drugs, each on a different schedule, I was
AH>  the only living person who had the drill committed to memory.  But
AH>  just in case something unexpectedly happened to me, the oncologist
AH>  & I kept meticulous records of how these things were supposed to
AH>  be done. :-))

MH>  I have all the CureSeach papers that plot out everything by day.


          Cute... we weren't told what would happen in the next stage until we 
got there.  It was thought at the time that parents would feel overwhelmed.  I 
understand that because (with a kid who... thanks to the effects of prednisone
.... was unable to sleep before 3:00 AM although the vampires made their rounds 
at 7:45) it took me a week to read the stack of papers explaining what parents 
must know before a kid would be discharged.  And only then could I turn to the 
library book I'd brought with me... Bernie Siegel's LOVE, MEDICINE & MIRACLES! 
When I had to pack a hospital suitcase in a hurry I grabbed the first book off 
the pile on the window sill.  I found it quite helpful at the time because the 
author is an oncologist who became interested in why some folks survive cancer 
while others don't.  He encouraged me to go on doing what I was already doing, 
although other folks thought I was nuts.  Bottom line is, my daughter survived 
leukemia at a time when the odds were a lot less favourable than they are now. 
And together the two of them inspired me to start this echo years ago....  :-)



MH>  Each week feels like a roller coaster.  We go up (feel better) up
MH>  until treatment, and then it is back down..  Then back up again.


          Sounds familiar.  Hang in there....  :-)




--- timEd/386 1.10.y2k+
 * Origin: Wits' End, Vancouver CANADA (1:153/716)

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