Subject: Still very sick..

Monday 3/16/98

Brian's website;  http://www-d0.fnal.gov/~hanlet/Brian/brian.html

Dear Friends and Family,

Thank you for your out-pouring of e-mail following the last update.  This has
been an especially hard time for Brian.  Too much medication?  Too little
medication?  It is so hard to tell when dealing with a child so young. All the
things that are happening to him are side effects of the many drugs he's been
given----insomnia, agitation, itching, hallucinations, vomiting, short
attention span, emotional out-bursts, etc.  His little body is reeling with
all of these effects hitting him at the same time day in and day out.

Yesterday I was dismayed by his inability to listen to a single book.  We
usually read stacks of books when I am there.  He had ideas about what he
wanted to do, but could not concentrate long enough to do any of them.  He was
frustrated and tired, but could not sleep.

Last night neither Brian nor Sara got any sleep.  He's now had 5 consecutive
nights of no sleep.  He wanted to sleep, but couldn't.  He did fall asleep for
a few hours today and Sara slept as well.  She still feels tired.  A few hours
of sleep here and there do not leave her feeling rested. Her emotional fatigue
takes so much out of her that it is hard for her to recover and feel "normal.

I am taking off work tomorrow to be with Sara all day.  It is hard to be in
Brian's room hour after hour and day after day watching him suffer.  We know
that he will eventually feel better, but he has spent very few days since Dec.
9th feeling good.  Most of that time, he's been lying in the bed in the
hospital-----very sick and in pain.   Sara has been with him everyday--4
months.

We rejoice in your prayer support and give thanks that you are there for us.
Please pray that Brian gets some sleep and starts to heal and feel better.
Pray for peace for Sara.  This mother's heart is full of sorrow and her mind
is full of worry.  We know we are in God's loving hands and we try each day to
hand our worry over to Him.

Love,
Susan