Subject: Brian's back in his old room.

Monday 2/16
Dear Friends and Family,

Brian has several infections.  He has esophagitis (inflamed tissue), both
broviach ports are infected, and CDEF infection in his stomach (again--makes
his stomach hurt a lot).  His bottom has sores from the toxic chemo--itches
and burns.  His fevers were around 102 yesterday--Up to 104 today.  Tylenol
helps the fevers some, but it has not gone down to normal in 2 days.  His
blood pressure is very low this morning.  He is being given additional liquids
and Sara feels sure his blood pressure will come up.  Brian will have to go
into ICU if his blood pressure does not go up.

Brian is being kept somewhat comfortable with Morphine, Adavan and Benadryl.
We are happy to see him sleeping a lot during this very difficult period.  He
is extremely sensitive to any noise.  The IV beeping and rustling near his bed
disturbs him.

Sara and Steven spent Saturday night with Denny and I in Alameda.  We had fun
watching a video and chatting in a space bigger than the hospital room.  Stan
stayed with Brian.  Saturday night Brian was not on a PCA (morphine drip) and
the pain got out of control and he was very uncomfortable.  He got the PCA
noon on Sun.

After a great breakfast Sunday morning, Steven, Sara and I went to the
hospital.  Sara and Stan took advantage of our brief break in the rains and
went for a long walk along the beach.  They spent the afternoon together.  

Steven and I worked in the hospital room on his book report project.  Brian
slept a lot of the time.  This gave me time to work with Steven. Steven and I
had to work VERY quietly so as not to disturb Brian.  Once we couldn't control
our laughter and Brian got mad at us.  Steven and I did have fun working on
his project about Michael Jordan.  He has to make a movie---he got 7 pages
drawn, colored and written!  Steven worked very hard for almost 4
hours--without a break!! We are so proud of him.  We pinned the completed
pages on Brian's bulletin board so Brian could see them.

Brian had felt low all day.  He magically perked up when Sara B. came to visit
about 6:00 p.m.  He woke up and wanted her by his side the rest of the
evening.  He even SAT UP!  And he wanted her to read stories to him.  He told
his mom, "Mom, I've actually changed my mind.  I want to marry Sara." (His
cousin, my daughter)

He even got chatty and said," I like collecting basketball cards.  I got some
for Valentine's.  I LOVE Michael Jordan.  I like the Space Jam song.  I know
Tweety is a girl.  She is cute.  My favorite TV show is 'Blues Clues'. "   

Later we laughed when he announced, "I want a magic person in here.  I want to
see some magic!"  No magician has ever come to the hospital while we've been
there, but maybe that will happen sometime when he is feeling good.

Stan and Steven went home last night and that was when "The Girls" (Sara, Sara
B. -my daughter--home from college for the weekend, and me)  got crazy!
Brian was in a good mood with Sara B., so Sara W. decided she wanted to dye
her hair back to its' natural brown.  She and I went out and bought dye and
turned the room into a beauty salon!  The nurses were sure we'd lost our
minds.  We put tin foil on some of the blonde---none of us had done this
before---and used hospital tape to tape some of the blond strands to her face.
Sara looked totally goofy--we took photos!  We laughed and laughed and Brian
did not seem to mind.  We made a huge mess and waited impatiently to see if
Sara's hair would look like a disaster.  We are thrilled to report that it
looks FABULOUS!  The blonde streaks that we somehow created look great!  A
miracle!  She can't wait for Stan to see it when he comes back tonight.  

We haven't had such good fun in a long time.  It was nice to take a few
minutes to be silly.  Brian was patient with us and by the time we were done
he'd peacefully fallen asleep.  He had a bit of a fitful night.  His fever
went up and his IV pole started beeping a lot (for 3 hours). Once the pole was
quieted he and Sara got some sleep.

They cultured his ports again and are running more tests, because his fever is
high.  He is on several antibiotics for infections and 4 drugs for nausea plus
pain medications.  He tries so hard to be "himself", but all these drugs make
it hard for him to function.  His hands shake a lot whenever he tries to use
them.  He did eat some of a Valentine sucker yesterday and drank some water.
When in his presence, you are filled with admiration.  He is an
extraordinarily brave child.

Please pray that his blood pressure comes up and he does not have to go to
ICU.  Pray that the antibiotics clear up his infections.  Pray that the
doctors stay on top of his pain.  Praise God for the moments of pleasure
experienced by each of us at the hospital yesterday.

Love,
Susan

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