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

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

AH>  You may remember our daughter had ALL when she was three.

                            [...]

MH>  Yes, I remember your post on that subject.  How long was
MH>  her treatment?  It seems it averages between 2 1/2 to
MH>  3 1/2 years - girls typically get less treatment.


          That part hasn't changed, apparently.  Her treatment lasted for 2 1/2 
years... but I was also told it took 3 1/2 years for boys.

          I understand the usual dosage of prednisone is more conservative than 
it was years ago, however, and from what you said in another echo I take it the 
effect on your son's behaviour & energy level has been mostly positive.  With a 
higher dosage over an extended period of time, folks tend to act "wired".  They 
are sensitive to noise & light... they may be impatient & irritable... and they 
can't sleep.  I've seen similar effects with virtually everybody I've known who 
has been in this situation regardless of their age or the medical reason(s) for 
using such high dosages.  According to our Merck Manual they must all have been 
mentally unbalanced to begin with... but the oncology nurses know better.  Like 
parents, they have far more experience with the "hands-on" stuff... [wry grin].



MH>  We are on month 3 right now - just started a new phase.


          We had basically three stages... (IIRC) induction, consolidation, and 
maintenance.  Would it be safe to say your son is on maintenance right now, and 
things have settled down to a point where you can write to us about it...?  :-)



MH>  Depending on the phase, there are some daily meds he
MH>  has to take at home.


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



MH>  I have entire care plan on printed out pieces of paper
MH>  that outline the phases and what happens on what day.


          Good idea.  If it's anything like our daughter's protocol, it's quite 
a challenge to keep track of all this stuff.  (Oncology parent joke... "if this 
is Tuesday, it must be methotrexate.")  With umpteen different drugs, each on a 
different schedule, I was the only living person who had the drill committed to 
memory.  But just in case something unexpectedly happened to me, the oncologist 
& I kept meticulous records of how these things were supposed to be done.  :-))



MH>  Given everything that has happened, he is doing great and
MH>  headed in the right direction.  That is all we can ask for.


          Yes... and just as I feel I prepared myself years ago for the child I 
had later, I feel you've done the same in your own way.  Hang in there....  :-)




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

.