Subject: Brian at home.

Sunday  3/29/98

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

Dear Friends and Family,

It is good for Brian and his family to be home.  I had visions of Brian
laughing and playing with Gareth; eating; getting stronger and having fun.
That was not a realistic expectation.  All the chemo treatments have greatly
weakened Brian and he finds he needs to sleep a lot of the time. 

 He is not in pain, but he is not yet able to eat. He vomits everytime he
tries to eat. He's lost 4 lbs since Wed.; he now weighs 37 lbs.   He has no
appetite and will not drink the Carnation instant breakfast.  Pediasure,
milkshakes, ice cream, pudding, applesauce, popsicles, soup, etc.  Nothing
appeals to him.  The hot and cold temperatures of the foods bother his throat.
He, of course, needs to eat and drink.  We know the doctors will want to put
in an NG tube since he is not eating; however, we know that all that does is
make him vomit.  We also know that he needs to get his stomach to "wake up".
This will be a slow process.  He's been on IV feeds since Jan.  

These days have given us a feel for just what a slow process his eventual
recover will be.  In addition to trying to eat, he is trying to move about.
He can crawl a little, but he tires quickly.  His leg muscles have atrophied
and it will take time for them to develop strength again.  This chemo delay
has clearly been a good idea.  Brian needs this time to rest and sleep.  

He immediately wanted to sleep in his old bed---the top bunk in his room with
Steven.  He's been sleeping in his bed and has even spent time in their
playhouse in the ceiling area.  He must be carried up the ladder, but he has
played and slept there during the day with close adult supervision.

Steven has enjoyed having a chance to have his friends over to play with him.
The house is filled with the playful noises of little boys running about.

We've all done some catching up on sleep, but this has given us a long-range
view of what is coming.  We do have hopes of Brian starting kindergarten in
September.  He will need some recovery time to gather strength to go out and
join his peers.

The current plan is for evaluation tests to be run at UCSF on Wed. on an out-
patient basis.  They would spend the day at the hospital and then go home.
They will do another bone marrow biopsy, and a CTSCAN of his head, chest, and
abdomen. Chemo is scheduled to resume on Mon., April 6th.  Lack of eating and
drinking  may result in dehydration and change those plans.  We do hope that
Brian will be able to start drinking enough to avoid an early return to the
hospital.

Sara, Stan, and Steven went to church this morning.  It was a wonderful
experience for them.  A member of their church suggested a "peg line" that
goes directly into Brian's stomach.  It has to be surgically put in, but it
would be a way to get his stomach working again.  Sara is going to suggest
this to Brian's doctors.

Please pray that Brian's stomach starts working and he is able to keep food
down. 
Rejoice that they are all sleeping well and getting refreshed.

Love,
Susan