AFP
Wednesday, August 1, 2001 -- 6:54pm
Posted by Bar


I don't want to keep you waiting like I had to wait for Forrest's AFP this
morning.  It came back at 89 - not terrible, but not great.  I had braced
myself for a number like 800, so in a way, I was relieved.  Clearly, the
chemo is doing something.  It has a two week period of effectiveness, so
maybe this week his number will go down some more.

I prepared myself for 800ish, but I dreamed of a 0. His hair has not fallen
out, so I am not really surprised.  As usual he is doing beautifully.  His
platelet count is low enough to require a transfusion tomorrow, and he has a
pretty low white cell count, but all of this will recover by the end of next
week.  He's running around like normal and making it all bearable for Peter
and me, but I confess that these Wednesdays are almost unbearable.  The
waiting is awful.  The results are disappointing and discouraging.  Peter
deflates visibly.  I follow.  Today I finally felt my anger.  If I knew how
to, I would have run into the woods and screamed my brains out.
Unfortunately, I don't know how to do that.  It would probably do me a world
of good.  I wondered today if that wasn't exactly what I am meant to learn
through all of this:  how to fully express my anger.

Anyway, there you have it.  Next week's AFP will determine if radiation is
purposeful or not.

Today I am having trouble.

Tomorrow I will fell better.  I always do.

Much love to you all,
Bar

Quick Hello
Friday, August 3, 2001 -- 12:23pm
Posted by Bar


Just wanted to let you know that all is well here again.  The length of time
required to recover from discouraging news is less and less.  Our skin is
considerably thicker than it was a year ago.  We have learned how to be on
the edge and every time we're pushed closer we simply adjust.

Forrest as always is doing great.  We went to Albany for a platelet
transfusion yesterday, and as is often the case, he surprised us by not
needing one afterall.  His white blood cell count is recovering well too, so
we're in good shape.  I worry that I have painted a sad or sick picture of
Forrest, and I assure you, those two words in no way describe him.  Me?
maybe every so often, but Forrest is not to be put down.  He's learned all
50 states and puts together a very advanced puzzle to prove it.  He knows
where Iowa is which is way beyond me.  He beat me on the beat-the-buzzer
test that one of his audio books has for testing his knowledge of geography.
I'm STILL working on where Nebraska is.  It's terrible.

Peter is working away in his shop making beautiful wood turnings.  I am
hoping to put a show together for him this fall or spring to show him off.
He's really good and he's really enjoying himself.

I have scheduled another show for September 29th at the Colony in Woodstock.
If you're within driving distance, I hope that you will come.  The Colony
building has just opened after a 50 or so year period of waiting for someone
with the courage to open her doors for her.  She's a beautiful over-sized
building and wonderful to hear music in.  I'm very excited about that show.
Peter, Forrest and I are headed there tonight to hear Billy Faire, one of
Forrest's buddies who plays the banjo.

I feel better when I forget what's going on these days, which is easy to do,
so I'm going to sign off.  Wishing I could share some wisdom, but I am
wisdom-less today.

Thank you for all of your messages and thoughts. We love you for that,
Bar

Wednesday
Wednesday, August 8, 2001 -- 9:19pm
Posted by Bar


Another week; another AFP.  And it's good news.  Forrest's AFP is 60 this
week.And although it's not 0, it's clear that this last round of chemo
worked enough to keep his growing cancerous cells in check.  Here's hoping
that radiation will still be able to get the rest.....Time will tell.

We begin radiation on Monday morning at 7am.  This Friday, the radiation
doctor will conduct Forrest's simulation.  That is, she and her colleagues
will set up every detail of Forrest's radiation therapy.  They will first
sedate him, and thenfigure out all of the angles that they need to shoot
from.  They may build a cast for him to be positioned in so that each day of
therapy will be identical.  They'll tatoo the areas that will be radiated so
that they can be sure they're doing the right spot each morning.  They'll
x-ray him a lot to make sure his innards are in the same place each day.
He'll be sedated for about 2-3 hours as they do this work.  There are a lot
of unsettling things the doctor has to figure out and account for, like:
when they radiate him, they have to be sure to radiate him square to his
spine so that the vertebrae that are radiated die equally on both sides of
his spine.  If they don't get that right, one side of his body will grow,
and one won't.They also have to figure-in the fact that his liver will move
with each breath, so they will radiate a little beyond the point that they
need to hit just to be sure they get everything.  That means they'll be
close to his heart and other vital organs.  It's enough to keep me up at
night, and it does......When therapy starts on Monday, he will have just one
minute of radiation each morning Monday through Friday at 7am for the next
4-5 weeks.  We're going to commute to Albany so that the rest of his life
will be pretty normal.  His doctors are fairly sure that he will sail
through this because he is so strong.  We'll see.  I hope that they are
right.

Just for the record, Forrest continues to wow his doctors with his
resiliency.  He never needed a platelet transfusion this week, and his
energy level is increasing with each round of chemo - the inverse of what
they would have expected.  We have all been having a great time.  Our
weekend was crammed with great stuff to do and we just kept going and going
and going.  Two birthday parties, several trips out for ice cream with
friends, visits from grandparents, a chamber music concert for kids, a new
baby sitter named Jenn, and her boyfriend, Zach - both aged 19 and both
delightful.  Forrest was especially drawn to Zach who he basically adopted
as a big brother.  He's been asking to have them back since they left.
Hannie, our beloved baby sitter who comes in the mornings has been around a
lot too, so Forrest's life has been wonderfully fun and social.  Last night
we went out to Wal-Mart to look for his longed-for purple birthday bike.
While we were looking, a salesman came over to help and turned out to be a
cancer survivor himself.  He had an aggressive brain cancer at age 5 and is
now 28.  I needed him last night and was grateful to hear his story.  It's
amazing to me how over and over again I am given what Ineed.  Thank you,
Asian.  (What a great name he has too!)

I'm off to play with my boys.  We have been sooooo hot all day.  It's
finally reasonable enough to be physically active now.  A mere 80 degrees
inside now at 9pm!!

Much love to you,

Bar

Third Try
Monday, August 13, 2001 -- 3:39pm
Posted by Bar


I am so frustrated!  This is my third e-mail to you in less than 24 hours.
The last two have been lost just as I was doing something that should not
crash my computer:  saving the document.  It's maddening.  And the worst
part is that it's probably me that's at fault and I have no brain for such
things - particularly now.  Don't know if I have the strength or creativity
to write another even vaguely interesting e-mail after two trys, but I
really want to be in touch, so I'll give you the basics at least.

Forrest is doing great as always.  Peter and I are tired, but getting along
better than we have for a while.  He even kissed me good-bye when he went
out this afternoon.  WOW.  And he called me from work last week - which he
always did before cancer at about the same time every mid-day.  How
romantic.  I love it!  Do you think he missed me on that one day he could
get to work??  Yeah, I think so....  (I didn't mention all that sappy stuff
in my failed attempts to write you earlier.  Perhaps this is a good thing to
have to write you again?)

Forrest started radiation this morning.  All went well.  On Friday he had
his simulation when they marked his tummy with purple lines to tell them
precisely where to radiate each day.  The lines are bold and disturbing to a
mommy, but Forrest thinks they're pretty cool.  For the first time in a
year, he is proud to show anyone who wants to see his tummy.  That's a good
thing.

It's worth trying to repeat the story of Forrest asking me where God is
yesterday afternoon.  It came up when I told him about how my friend Robert
had died and that he had gone back to be with God.  I try to take or make
opportunities to talk about death with Forrest to see if he's thinking about
it, and also to make death a natural thing rather than a scary thing.  I
think this is very important particularly in Forrest's case, because death
vocabulary surrounds him too often, but also for each of us and our kids.
Our culture seems pretty unable to cope with death and I think that makes
things like cancer even more unbearable and terrifying.  Anyway, he asked me
where God is?  I told him that I thought it was the best and most difficult
question he could ask, but that I thought God was everywhere.  Later when he
was playing with his teacher, Cheryl, it came up again.  At that moment he
was playing with a babydoll who was shirtless.  He looked down at her and
said quite confidentally, "I think God lives there" (pointing to her belly
button) Cheryl and I decided that his was as good an answer as anyone's;
that in fact, God did live in the dolly's belly button.  When I thought
about it on the way home, I realized that God truly is wherever we think He
is.  There is no right or wrong answer.  I think that in many ways, children
know more about that than we do.  They seem to be tuned in to that
frequency.

So all is well.  We're on our way to being done with radiation.  20 more
sessions to go.  And when we're done, we'll have only three days to wait
before we go meet Steve from Blue's Clues in New York City.  CAN'T WAIT!
Enjoy these last weeks of summer.  We'll be thinking of you.

Much love, Bar, Peter and Forrest

hi
Thursday, August 16, 2001 -- 12:36pm
Posted by Bar


Four zaps down; 17 to go.  The nurses in the recovery room where Forrest
comes out of sedation each morning, have given us a blackboard so that we
can countdown the number of radiation sessions left.  It's very helpful.
All of the nurses and technicians are very nice.  They don't see many kids
in the basement where they work, so I think they're grateful in a way.

Forrest is thriving and more.  Radiation, like all the rest of his therapy,
doesn't seem to phase him.  The treatment takes about 12 minutes start to
finish.  Then he needs 20 minutes or so to wake up completely.  He always
comes out slowly and like he's drunk too much gin.  It's funny....but not
that funny, really.  I will never get used to sedation.  Watching him slump
over in a matter of miliseconds is an awful feeling.  These drugs are
powerful, and thank God for that.  Still they are terrifying because of
their power.

Peter and I are very tired but we'll manage.  Forrest is so full of energy
that our days carry on as usual.  Right at this moment, three hours after
sedation and four doses of radioactive zapping, he's running around with
Hannah upstairs and jumping on the bed and generally challenging the odds in
a wonderful way.  I admire him more and more.  The whole thing is so
surreal.  He gets stronger and stronger as the time we spend fighting back
his cancer gets longer and longer.  Why can't it just give up and be a happy
loser?

Peter has found a wonderful internet site which gives
Hope for Hepatoblastoma patients....I think that's the name of the site.
Anyway, on that site are many cases of other kids with very similar
scenarios to Forrest:  close but not quite AFPs, multiple rounds of chemo
etc etc.  Many of these kids ultimately beat it, and that's very, very good
news and gives both Peter and me much hope.  I think that kids want to live
and that that is very powerful medicine.  Forrest clearly does and is.  It's
a miracle to witness, I'll tell you.

In the meantime, life carries on much as usual but with less sleep.  Today I
have a second rehearsal with the women who are singing my piece with me over
Labor Day Weekend.  Our first rehearsal was exciting and challenging.  The
piece is pretty demanding.  Today we should really be able to hear what it
will ultimately sound like.  I was also hired to do background vocals on a
jazz recording next week.  I'm very excited about that too.  Nice to do
someone else's arrangement for a change.

I hope that you are all well too.
With love, Bar

short and sweet
Friday, August 17, 2001 -- 1:04pm
Posted by Bar


Week #1 of radiation is done.  YIPPEE!  We're a quarter of the way done and
doing fine, although a lot tired.....

Just wanted to mention a couple of things before the weekend:  Some of you
have asked where exactly Forrest is being radiated.  His therapy will change
over the five week period, but now he is having both lungs radiated at a
very low dose, and his liver at a slightly higher dose.  As the weeks
progress, the radiation doctor will focus less on his lungs and more on a
very specific part of his liver.  When Dr.  LaQuaglia removed the tumors
from his liver, he was unable to clean as well as he wanted in the space
between his liver and heart.  The radiation is meant to clean all of that
up.  Apparently radiation is pretty complicated, so I'm not sure I'm
describing this at all well, but that's how I understand it.

The other thing I wanted to say is that Forrest's 3rd birthday is on Thursday the 23rd. He is very excited about it, as any little kid would be. Peter has made him a wonderful mailbox that replicates the character named Mailbox from Blue's Clues so Forrest is more than ever before, excited about retrieving the mail. If anyone would like to send him a card for his birthday, I think that he would be THRILLED to get your mail. Our home address is: 95 West Saugerties-Woodstock Road Woodstock, NY, 12498

(This is what a toy version of Mailbox looks like)

It would be great to hear from you and an especially wonderful present for
Forrest.  Thank you in advance!

Have a great weekend, Bar

3
Thursday, August 23, 2001 -- 12:12pm
Posted by Bar


Good morning, Forrest is three.  YIPEE!  It's been quite the morning.  We
did our daily trip to Albany at 6am, and were greeted by the radiation staff
with many presents, a cake (made by the anesthesiologist and very yummy) and
of course, an early morning rendition of "Happy Birthday to you".  It was
lovely and Forrest totally enjoyed every moment.  When the sedation team was
ready for him, he got off the floor where he was doing his new puzzle and
said, "ready?  Come on mommy, let's go".  He loves this radiation thing.
Everybody is so nice and it's painless and - as far as he's concerned - it's
the coolest thing in the world.  His attitude is remarkable.  It makes
getting up and doing this scary thing to him much easier for this mommy.

Peter is not quite as happy.  He's struggling with getting enough sleep and
with understanding where to put all of this in his heart.  I see him
suffering, and I don't know quite what to do except to feed him as well as I
can and to try to understand his stress.  Men cope with this sort of thing
so differently.  I feel as though he's carrying the whole weight of
Forrest's situation alone, and that he is very lonely.  These e-mails and
the circle of friends I have gathered around me have helped me enormously.
I guess men have more trouble doing that sort of thing.  Sometimes I am very
glad to be a woman.  This is one of those times.

I wanted to catch you up on how Forrest is doing medically speaking.
(Spiritually and emotionally he is so strong that I don't remember the
physical challenges when I write you).His AFP is stable.  It's down to 65.
The radiation doctor doesn't expect to see any real change in that number
for another week or so, but the fact that it went down from last week's 75
is a good thing.  It's certainly under control.  Other than that he is still
physically strong.  His white blood cell count is down, but he's still
running around more than full tilt, he's not sick to his tummy or tired or
irritable - quite the reverse.  He's eating like a small horse and he hardly
has time to take a nap there's so much to do.  Yesterday, I was so tired by
3pm, that I laid down on my bed and told him that I just couldn't do one
more thing.  He happily played by himself for an hour or so before waking me
up and wanting my company again.  What a nice kid!  He's really growing up.
And, I'm growing up enough to let him play alone and trust him enough not to
hurt himself or go off somewhere.  Our house is small, so that's a
reasonable thing for me to do.  I am very grateful.  I didn't actually
sleep, but my eyes were closed and I rested.

I wouldn't be telling you everything if I didn't tell you that this morning
- when Forrest woke up from anasthesia, and after another round of gifts and
the cake were presented to him - he had a most unusual temper tantrum.  I
tell you this mostly because I don't want you to get the idea that he is
always delightful - although mostly he is.  I think that he deserves an
opportunity to express his emotions, and this morning theymanifested
themselves in a fairly typical 3-year-old tantrum.  He worked it out in
about 5 minutes, but in the meantime, Peter and I were completely thrown off
guard.  Forrest obviously was overwhelmed by all that was happening (early
morning wakes-ups, sedation, radiation, oxygen, blood pressure cuffs, cold
hands, birthday cakes, presents and cards from people he hardly knows but
who obviously care about him etc etc, all within an hour).  It was too much
for him and we were not prepared for his reaction.  When we talked about it
later, we realized what a good thing it was for him to get fiesty like that.
The kid has every right to be angry by now, and mostly he doesn't express
it.  It would be good for him to do it more often even if it does throw
Peter and me a curve ball.

These days there's lots of talk about God.  Forrest seems very intent on
pursuing the question of His whereabouts.  I think it's great.  Keeps me in
a very nice frame of mind throughout the day.

Thank you all sooooo much for the stacks of birthday cards that have been
coming everyday this week.  Forrest LOVES getting all of them and has them
all over the living room floor.  I'm guessing that today will bring another
windfall of cards and I am very grateful.  We all feel so much better
knowing that you are all there thinking about us.

Have a great weekend everybody. Much love, Bar

PS
Thursday, August 23, 2001 -- 12:37pm
Posted by Bar


Just wanted to let you know that I updated my performance schedule page on
my web-site so that my upcoming shows are listed.  Haven't done that for
over a year....If you're in upstate NY or in the Philadelphia area, I hope
that I will see you at one of the shows.  I'm very glad to be getting back
to work. b

Birthday News
Monday, August 27, 2001 -- 2:21pm
Posted by Bar


Forrest's birthday party last night was a real success.  The weather was
perfect, although it had threatened to rain just an hour before.We had a
picnic for him - everyone who came brought their own dinner and balls to
play with.  We brought the cupcakes - vanilla on vanilla, Forrest's choice.
It was very relaxed and nice.  Not much work for me except making the
pre-fab cupcakes and some sugary icing.  So much for Forrest's fairly clean
diet.  He inhaled 4 of the suckers almost immediately.

The best part of the night was watching Forrest play with several of his
cousins who had come up from Philadelphia to celebrate.  He hasn't seen them
for awhile and they all got along really well.  Danny is a week older than
Forrest, Ben is 11, I think, and Al is 14.  (Let me know if I have that
wrong, you guys, ok?)  The last time I saw Alison, she was shorter than me;
now she is very definitely taller than I am.  She was really great with all
of her little boy pals.  One of the thoughts that breaks my heart often is
the idea that Forrest's extended family and my friends that are far away
would not have known him if he should die.  He is such a huge part of who I
am and who I have become as a mom and as a woman, that I can't bear to think
that they might never know him.  I was very glad to have my family around
last night for that reason.  He was vibrant and energetic and full of joy
and life.  He's never been stronger and I love that they have seen him this
way.  Here's hoping and hoping that they will always know him this way.

We started week three of radiation this morning.  It's good to be getting it
over with.  Forrest continues to do well and was excited to be back at the
hospital this morning.  We went to the clinic after his therapy to draw
bloods and just say hello, and his blood is even stronger than it was on
Thursday.  Go figure.  The little guy is being hit pretty hard with
radiation and HIS body is fighting harder.  It's amazing.  (When I say his
blood is stronger, I am talking about his white and red blood cells - both
of which are more abundant than last week, and that's a good thing.  We'll
get the now infamous AFP results on Wednesday.....)

I went to the camera store to pick up a roll of black and white prints that
were developed on Saturday.  The roll had been in Peter's camera and we
weren't sure what was on it.  Lo and behold there were pictures of Forrest
from about a year and a half ago.  He had hair and he was beautiful and I
nearly got sick when I saw them.  I guess I was expecting to see some awful
pictures of myself, and instead I saw these excruciatingly beautiful
pictures of my baby just before we knew what was going on in his body.  It's
aterrible feeling not remembering him from those days.  He looks so
beautiful now it's hard to believe he was even more incredible then.  Both
Peter and I wonder what he might have looked like if all of this had not
happened.  But,I remind myself that he looks great now and is blessed enough
not to have suffered any real physical damage throughout this ordeal.  It
could be really bad.  As it is, he has wonderful scars on his belly and
back, but otherwise he is normal.  Thank God for that.

We are over the halfway mark for radiation now.  YAY!  I'll be in touch
later in the week to let you know how we're doing.  In the meantime, thank
you for all of the cards.  Forrest has been having a great time getting the
mail everyday.  And thank you for keeping us in your thoughts.  In continues
to make the difference between losing our minds and not.

Love,Bar

All is Well
Friday, August 31, 2001 -- 5:00pm
Posted by Bar


Hi everybody,

Week #3 of radiation is over.  We have 6 more sessions to go.  YAY! Forrest
will be very disappointed.  The kid is nuts!  Last night before we went to
bed he asked me if we could go get muggle buggled "right now".  (aka:
radiated) What am I supposed to say??  I told him that everyone from the
hospital was home sleeping, and I promised him that they would be there in
the morning if he could just wait a few more hours.  The technicians and the
anesthesiologists and nurses are so nice that he can't get enough of them.
I am VERY grateful for his peace with it all.  Apparently some kids are
really messy.  Can you blame them?

All of that said, I am also glad to report that Forrest's AFP has dropped
again.  It's back down to 33.  That is very good news.  But, and I hate
adding "but", but, you can imagine that I am a little tentative about
celebrating this time around.  We got the wind seriously knocked out of our
sails a couple of months ago, so I think that I will be more cautious this
time.  BUT, HALLELUJAH, anyway!!!!!!

I am, Peter is, Forrest is not at all, very tired.  I've just woken from a
nap and Peter is still snoozing.  He has gone back to work a few hours a day
on top of getting up very early, zapping his kid and driving 120 miles each
morning to do so.  Poor guy is really exhausted.  Forrest is the only one
who doesn't seem to need a nap.  Today I told him he had to take one so that
daddy and I could rest.  He agreed without a fight and is still conked out
upstairs.

For those of you within driving distance of Woodstock, please come out to
hear the Woodstock Cycle this weekend at St Gregory's church.  I will be
premiering my piece as will three other composers.  I have heard bits of two
of the others and they are really excellent.  Maiya, Katy, Julie and I have
been working hard on my piece, too, and last night our rehearsal was really
exciting for me.  It all came together and sounds, well, great!  I'm very
proud.  They have worked hard on a difficult piece and I think that it will
be worth hearing.  The shows are Saturday and Sunday at 8pm both nights and
are free.  The whole program will be about an hour long.

Many more thanks for tons of cards for Forrest.  What a thrill he's had
getting the mail.  You guys are the best.  Have a wonderful holiday weekend.
Much love,

bar