Subject: Brian went home on Sunday!

Monday 1/19
Dear Friends and Family,
I guess we could say that Brian "breezed through" his chemo last week.  He had
what could be described as a more "normal" week.  He got to go home yesterday
morning.  No one expects him to be home very long, but it is wonderful for him
to get out of the hospital for a few days.  His first question was, "Do I have
to come back?"  When told yes, he got very upset and said he was NOT coming
back.

Last Wed. and Thurs. were fun days of laughs and long periods of playing in
the playroom and in his room.  The effects of the chemo took over starting
Thursday and he got grumpy.  The prednisone (every 12 hours) gives him
uncontrollable mood swings.  He gets mad and can't be easily distracted.  He
loses interest in games and playing and withdraws into himself.  He yells and
gets very agitated.  

During last week, Brian had episodes of vomiting, nauseau and upset stomach,
but he was not on any pain medication.  This is good, because of all the
horrible side effects of the pain medicines.  His blood counts did not plummet
(yet) and he got no fevers.  Someone asked if he is geting better.  He will
not be getting better until the 6-9 months of treatments is over.  The chemo
just makes him sick over and over as it kills the cancer cells and the good
cells too.  Everytime he recovers he has to repeat the process.

Sara, Stan and Steven took a trip to the S. F. Exploratorium on Sat. for a few
hours.  They all had a great time.  Happy House has free tickets to a lot of
family entertainment sites in S.F.  The trick is getting away from the
hospital long enough to use them.  Diane took care of Brian so they could have
some fun time together.  I had to stay away from the hospital this weekend
because of my cough and cold.  Thank you for the cold remedy tips.  I am
finally experiencing relief.  I am resting up  so I'll be well by the time
they return to the hospital.

Sara and Stan were sent home with a carful of drugs and a long list of "to
dos".  This time at home will not be an easy time.  They will be responsible
for monitoring many procedures around the clock at home.  He will need daily
food (NG tube), hydration (IV), and prednisone (IV) and nauseau medicine
(IV)---plus stuff for stomach bacteria (CDEF),  benadryl, mucousitis medicine,
a fungal antibiotic,  and more..  Plus there are a lot of "what ifs" that they
must be prepared to deal with.  The home nurse will check on them daily.
Blood will be drawn and checked at the lab regularly.  

When they left to return to the hospital last week, their first load of
medical supplies covered the long kitchen counter and all of the kitchen
table.  Syringes (many different sizes), swabs, tapes, gauze patches, sterile
squares, etc. Some of it mysterious---we couldn't figure out what it was!~
How to organize all this stuff is still a "to do".  It would take many plastic
boxes to hold each thing!  And now they have even more stuff!

Brian gets to stay home until he gets a fever or the mucousitis gets so bad
that the pain can't be controlled at home.  Both of these things will happen.
It is just a matter of "when'.  We hope he's at home at least 3 days.  Of
course, we don't know, but we expect that it will take 7 to 10 days in the
hospital to recover from the side effects of the chemo.

His day of evaluation tests to check on the status of his cancer after the 3
chemo treatments will be Feb. 2nd.  He will start week 4 of chemo on Feb. 5th.

With all of the nursing duties that must be performed around the clock, we
need to pray that Sara and Stan are able to get some much needed sleep.  The
nights are not long stretches of restful sleep.  The IV pole requires
attention during the night and Brain often wakes up during the night.

The move to the new hospital wing has once again been delayed---maybe in
Feb.!!!  Those double rooms on the current floor are so awful.  Either we are
noisy and disturbing the roommate or vice versa.  Not a good situation.

Pray that the Warne family gets some quiet time at home this week.  Time away
from the hospital is so precious to them.  Please pray that Brian's bout with
mucuositis is not as severe as last time.

Just talked with Sara--- They didn't sleep AT ALL last night.  Brian vomited
everything she put in his IV and Ng tube---every medication, food,
water--everything.  She called the hospital this morning to find out what to
do.  Sara really wants to try to get everything under control, so that they
will not have to return to the hospital right away.  All the meds have certain
times that must be given.  That got all messed up when he vomited all night.
She filled 6 syringes --each with something different---and gave him water and
slowly over 2 1/2 hours put those syringes into the IV--he hasn't thrown up
yet!  

Brian has started getting cankersores in his mouth and on his
lips(mucousitis), but he is not complaining about throat pain so it has not
spread yet.  

Brian's friend Garreth is visiting for a short time.  Sara unhooked Brian from
the IV so he can move around better while Garreth is there.  They are playing
and having a good time.  Sara said that it has been a quiet day.  They have
not slept, but she and Brian have been lounging in pj's together.  Stan has
been running out getting newly prescribed medicines and supplies as needed.
Steven went to a friend's house to play for a while.  

Pray that they all get some sleep tonight and that Brian is able to keep down
the food and medications.  
Love,
Susan