Subject: More good news!

Thursday, April 16, 1998

Dear Friends and Family,

Believe it or not, chemo is done and Brian is going home TODAY!  Chemo started
Monday and ended today.  He was so strong from the 2 week delay that he
breezed through with few physical side effects.  Only vomited once. 7 to 10
days from last Monday, he will start to experience side effects and will end
up back in the hospital, but he is getting home early enough to at least last
through the weekend. (We hope!)

Physically he is doing well, but the twice daily prednisone (a steroid) is
effecting his behavior severely.  His personality is changed--a lot of anger,
screaming, complaining, thrashing about wildly, etc.  Starting Tuesday he
became very difficult to be around.  Sara struggled through Tuesday alone.  He
bit her on the jaw and tried to bite through his IV lines. I joined her
yesterday and it was a 2 man job for sure!  The most important thing was
protecting him from hurting himself and removing his IV tubes.  Tolerating his
screaming (from anger not pain) was tough, but not bad when we kept reminding
ourselves that it was the prednisone reaction.

We had some funny moments.  He enjoyed his time in the playroom, but got
furious when it closed at noon for lunch.  He sat on the floor by the playroom
door and refused to leave.  We coaxed, pleaded, begged, bribed... got
assistance from one of his favorite doctors, BUT he would not budge.  I picked
him up and put him in a wagon and struggle to keep him there while we rode the
elevator to the 7th floor.  Once off the elevator, I could no longer restrain
him.  He jumped out and said he wanted to go back to the playroom.  He sat on
the floor and would not move.  We pretended to walk off and he immediately
jumped up and headed for an open elevator--dragging his IV pole.  Sara and I
managed to recapture him before the door closed.  Sara enlisted aid from
George, one of our favorite nurses.  The three of us managed to talk him into
going into the waiting room near the elevators.  BUT not before he had
stripped off all his clothes in protest and was wandering about dragging his
IV pole naked!  We wished we had had a camera.  We had to hide our
laughter---he was very mad!  He calmed down in the waiting room. (Thank
goodness, it was empty.)

Sara left that afternoon to sleep at Happy House.  Dealing with him in this
condition is exhausting.  I sat with him while he yelled non-stop for about 4
hours.  He yelled, "I want my daddy!"  Stan came later that night with Steven.
He promised he wouldn't yell when Stan came, but he did.  He did tire himself
out and sleep well last night.  Stan slept in the hospital room while Sara and
Steven slept at Happy House.

Brian ate solid food while in the hospital--not much, but enough to be able to
avoid TPN.  His potassium levels kept dropping and that is a concern.  He has
to take potassium supplements.   A physical therapist came by twice to work
with his legs and give tips on what to do at home.  He still walks on his
toes.  He did not get leg braces.  He may be able to start walking normally
without braces. 

We were all surprised to be released from the hospital today!  Brian must take
the prednisone for a total of 8 days---twice a day!   So the next few days at
home will be crazy for them, but at least they will be home.  The doctors said
they do not know what the prednisone does to cure the cancer, but research has
found that when combined with the chemo drugs it helps.  He will have
prednisone for 8 days during each of these last 4 treatments.

The two week delay has truly been a blessing.  Brian was able to go to Sunday
School and church on Easter.  Sara got to go to choir practice and sing with
the choir on Easter.  And Brian had extra time to get stronger before facing
chemo again.  We feel sure that this why he's done so well this week.  We hope
the side effects will not be as bad, but we've been told that he will
definitely get sick next week and will have to return to the hospital.

Steven is excited because everyone will be home for opening day of his Little
League season on Saturday.  Even Brian will be able to go to his game if he is
not neutrapenic.  This family is beginning to get a taste of "normal".

Sara was very excited this morning when Brian's head doctor asked her to
address a group of doctors in training at 1:00 today.  She was asked to speak
about the relationship between doctors and parents of severely ill children.
She explained that she could not do this without talking about her faith and
how important her relationship with God has been during this ordeal.  She was
told that she could say whatever she wanted to say.  She was thrilled to have
this opportunity to witness to this group of people.

Brian is fussy, but we are thrilled to see him physically stronger and not on
any pain medications.  Praise and thanksgiving to our loving Father for giving
Brian renewed strength and courage.  Please pray that Brian is able to stay
home through the weekend.