Subject: Brian's back in his old room!

Thursday 3/5

Web Site:  http://www-d0.fnal.gov/~hanlet/Brian/brian.html

Dear Friends and Family,

Back at UCSF in the same room with the beautiful view.  Brian rode in the car
without too much fuss.  His Spinal Tap yesterday was at 11:00 a.m. in the OR.
It went well, but his room was not ready until 3:00.  He was not on an IV yet
so he played in the playroom from 2:00 to 3:00.

Brian was very unhappy when he had to be reattached to the IV.  He begged to
be left alone.  He gets 12 hours of AraC a day and high doses of VP16.  The
last chemo phase was his first exposure to AraC.  He could not complete that
phase, because the toxicity made him too ill.  The doctors have said he must
complete these 5 days of AraC.  He has already developed a fever--this
afternoon.   This may mean that he'll have to go on antibiotics again!  He
JUST tested C.dif negative!  Finally.  Hopefully he has not gotten another
infection somewhere.

He slept last night--except when they woke him to put in eyedrops every 3
hours.  One of the side effects of AraC is severe eye conjunctivitis.  He must
have the drops every 3 hours around the clock for a week.

He has been sleeping most of today.  The trauma of starting all the treatment
again has tired him.  He is aggravated and grumpy.  Adivan does help him
relax.  Sara is hoping that he will sleep tonight.  She is napping this
afternoon while he is sleeping.  The fever may interfere with his sleep.

Sara decorated the room with paper shamrocks today!   While home, Sara had a
few minutes to organize a few quilt materials.   She brought some star pieces
to hand-quilt while in the hospital.  Her days are long and she knows she will
be there for a long time.  We no longer dwell on dreams of "going home".  We
now know that with Brian "going home" does not happen very often.

The TPN (IV food)  has made Brian FAT!  He's over 40 pounds!  Mostly fat!  His
inactivity has made him turn into a little butterball!  The nutritionist has
cut back on his TPN fat content to try to trim him down.  They would like to
put him back on the NG tube for feeding, but they know he will be too sick
during this chemo phase to do it now.  They plan to leave him on the IV food
for a few more weeks.  

He can crawl and scoot about, but walking is difficult.  He is able to walk a
short distance with assistance.  Admirably while at home,  Brian refused to
wear diapers and used the toilet instead.  He had to sit (not able to stand up
long), but he successfully used the bathroom.  

Praises to God for the wonderful days at home!  Please pray that Brian can
handle the high doses of AraC for 5 days without his organs becoming toxic.
Pray that they both are able to sleep each night.  Pray that doctors are able
to keep his fevers down during this chemo treatment.

Love,
Susan