Subject: Brian's back on chemo!

Thursday night  1/15
Dear Friends and Family,

Being home Sat. through Monday was wonderful for Brian.  He got to play and
laugh and forget about doctors and nurses.  He even started eating a bit.  The
rough part was telling him Tuesday morning that it was time to go back to the
hospital.  He got very mad and said he didn't want to go.  He said they don't
help me; they make me sick.

That Tuesday morning ride to the hospital was awful with him pleading not to
go, Sara quietly crying and Stan trying to drive.  Brian was so mad that he
started yelling at any nurse or doctor that entered his room. Stan returned to
Santa Rosa and Sara did the night shift.  It would have been fine, but their
roommate kept Sara up all night with a loud TV and beeping monitors that
nurses never responded to.  Thankfully that roommate left and our new one is
quiet.  

Thankfully Susan had arranged for a sub at school so she could be with Brian
all day.  Sara really needed some sleep.  Even at home she did not get a whole
restful night, because she had to monitor the IV all night and day.  Being a
24 hour nurse doesn't allow for good sleep.  Sara stayed at Happy House and
tried to sleep Wed., but she only got about 4 hours.  Couldn't sleep.

Susan and Brian had a fabulous day of rowdy fun!  This cancer ride is so
unpredictable.  We never know what to expect from one day to the next.  The
nurses and doctors can give perameters, but they always say "every child is
different."  We read books, played in the playroom, walked down the hall to
see the rain and view,  built a tent around his bed and threw toys around the
room, kicked a giant spiderman inflatable doll, laughed a lot!    He didn't
eat, but had fun.  He got so tired that he fell asleep about 6:30 and slept
all night.  He gets all his nutrition through IV and Ng tube.

Sara spent Wed. night at Happy House trying to get some much needed rest.  She
found herself so sleep deprived that she couldn't think!  Diane came about
10:00 p.m. to relieve Susan and Denny and spend the  night with Brian.  She
actually got some sleep and spent today with Sara as well.

Today Brian, Sara and Diane had another fun day of playing!  3 hours in the
playroom!!!  Built a tent at the end of the hall and ate lunch inside.  Brian
didn't eat, but he loved the tent!  He rode a tricycle up and down the hall
with Sara running to keep up with the IV pole!! (That is quite a picture,
isn't it???)  They had a great day.  Yes, he is still getting chemo, but the
effects don't hit until later.  We don't exactly know when, so we'll enjoy
this fun and make every minute count.

Stan returned this afternoon with Steven.  Stan will spend the night with
Brian and Steven and Sara will go to Happy House.  I am suppose to go do the
night thing Friday night.  I am concerned, because I awoke this morning with a
sore throat and cough!  Help!  Any instant remedies out there????  I can't go
if I am sick.  I have managed to stay very healthy so far and I am very angry
to be fighting a cold now.  I am hoping to awake tomorrow cured!  I need to
help them this weekend!

Brian got mad at Sara because she has been doing so much of the medical
stuff--even at the hospital. Stan is going to start sharing that job at home
so that Sara is not singled out by Brian as the "bad guy".  They HAVE to do it
at home, but now they have decided to let the nurses do ALL the medical stuff.
If it a bad (painful) thing they will leave the room and return after---to
disassociate themselves from the procedure. They can then be the "good guys".
Divorcing herself from the medical part today (for the first time) was very
freeing for Sara.  As you can tell, we are stumbling along trying to make our
way through a complex maze.  What should we do?....What should we not do?...We
are learning by trial and error.  It is so overwhelming each day, that it is
hard to concentrate and keep a clear focus.

Right now, we have decided to try to relax and enjoy Brian's "good" days while
they last.  It is hard, because we know what is coming soon.  Brian is
extremely alert and he knows a lot about what is going on.  He is making
associations between nurse visits (to put chemo or drugs in his IV) and his
discomfort.  This makes it hard for him to keep his composure when nurses come
in the room.  He is trying very hard to be brave.  Right now he is very chatty
and carries on charming conversations.  He makes marvelous observations and
makes up silly jokes!  A typical 4 year old!  He is a fun person to spend time
with.  I know that some of you do not know him at all.  If you don't know him,
he's a person you'd want to meet some day. 

Prayers.  Pray for Brian's parents to maintain strength.  It seems to be even
harder when you've experienced the "bad times" and know they will be repeated.
Pray for Brian to continue to keep his spunky spirit during the "bad" parts
and joy in the "good" times.

Your continued support means the world to each of us.  We take comfort in your
prayers.  When we get down, we remind ourselves of all of you following us and
holding us in your hearts.  Thank you.

Love,
Susan