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

Basically the same, but depending on certain test results, the treatment
times in the Maintenance Phase can be less.

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

He was on the steroid for the first 29 days in a row.  In addition to all
the things you noted, he also was eating like crazy.  This then means going
to the bathroom like crazy and he ended up with a rash that wouldn't heal
until he was off the steroid.

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

Is is on the "Standard Risk B-ALL".  There is Induction,
Consolidation, Interim Maintenance I, Delayed Intensification, Interim
Maintenance II, and then Maintenance.  

Currently, we are in the Interim Maintenance I.  It will be around the
Nov/December timeframe when we enter Mainenance - which will be much less
treatment.

AH> 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 remember one
AH> phase in which we had to go to the hospital every day for a week or two.

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

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

I have all the CureSeach papers that plot out everything by day.  That is
basically by playbook for this entire process.

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

Each week feels like a roller coaster.  We go up (feel better) up until
treatment, and then it is back down..  Then back up again.  I just remind
myself that he is still much better than the condition he was in when he
was first diagnosed.  

- Mark

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