Independence Day
Friday, July 6, 2001 -- 5:11pm
Posted by Bar


The fourth of July was so much fun that my face still hurts from smiling so
much.  We went to Bryn Athyn, PA, where Peter grew up and where much of his
family still lives.  It's a wonderful town just north of Philadelphia.  Many
of the families that Peter grew up with are still there, and everybody knows
everybody else.  They have a typical fourth of July parade with fire trucks
and ambulances and all of that.  In the evening, there's a picnic on a
baseball field in town and everybody goes to that too.  It was at the picnic
that Forrest really came to life.  There were kids galore running all over
the place.  All of them seemed to know about Forrest and he was very well
looked after and played with.  He took off from Peter and me and never
looked back.  When I looked out on the field, he always seemed to be
surrounded by a bunch of kids who were listening intently to whatever song
he had decided to share with them.  Then they would all get up and run
around again, play soccer, throw tennis balls, run after tractors, sing more
songs.  It was bliss.  Truly freeing for me and Peter and for Forrest.

We watched the fireworks and just before they finished, he crashed - he was
just completely tired from all the fun that he'd had.  It was wonderful.

It is so amazing to see him finding himself after all that he has been
through.  Being in Bryn Athyn with a very safe group of kids and parents who
all knew him or who had heard about him, where he was truly free to run
around without me or Peter, was a gift beyond words.  I am a very happy
mommy.  Thank you, Bryn Athyn!!

We're home now, and Peter and Forrest are off at the last day of day camp
down the street.  I'll join them as soon as I finish this e-mail.

Before I go, I wanted to let you know that we are still deciding what to do
about radiation for Forrest.  There's not much information out there about
radiation therapy and hepatoblastoma.  Not a lot of kids get to this point,
so there's not much information to base our decisions on.  The big issues
are whether to radiate both his lungs and the area on his liver there the
tumors were nearest his heart, or, just to do his liver - the primary tumor
site.  The other big question is what dose of radiation to administer.  Our
radiation doctor is wonderful.  We had a one hour meeting with her on
Monday.  Whatever we decide, it looks as though the therapy will last 5
weeks rather than the already-too-long two weeks that had been predicted
before.  So, we will be in Albany at 7am each morning.  Forrest will be
sedated (that's the really scary part for me), he'll get his therapy over
one minute, and then we'll go home.  Pretty grueling, but it looks like it's
the right thing to do.

Several of my local friends were confused by the difference between
radiation and chemotherapy, so let me just explain that they are two very
different things, but are often used together when treating cancer.  Chemo
is drugs that are administered in liquid form into the body.  Radiation is
essentially very high doses of X-ray administered to a very specific area of
the body.  Radiation is somehow able to destroy the kinds of cells that are
cancerous.  I've seen a video about it, but I don't fully understand the
science of it.

Time has flown.  I've got to go get Forrest. Happy Independence Day
everybody.  Hope it was a good one for you too!

Much love, Bar

News
Wednesday, July 11, 2001 -- 6:30pm
Posted by Bar


The news from here isn't terrible, but it isn't good either.  Forrest's AFP
came back at 63 this morning and that translates into a good swift kick in
the stomach for me.  Just when he's looking great, running around like a
normal kid and pretty much inspiring all of us who get to see him, his tumor
marker is inching up.Several people called him a miracle kid today, but
really he's just a normal kid who is longing to live and who nature is
challenging in a very big way.  I don't mean to make light of the miracle
that is his life, but I guess you could say I feel less sure of what a
miracle is this afternoon.  I just want him not to have cancer and I want
that NOW!  This up and down, maybe, maybe not, what-do-we-do-next mode is
breaking me down.  I hope, hope, hope that tomorrow I will feel stronger.

We have much to decide and little clarity with which to do so.  I want to
scream out for help, but I don't know who could possibly answer.  This
afternoon I'm not sure that even God, whoever that is, is able to hear.
Today the will of nature feels stronger than God.

I'm sorry to let you have it like I have.  I'm just over the edge today, I
think.  I'll get back in touch when I'm back together.

Bar

All is well
Sunday, July 15, 2001 -- 10:11pm
Posted by Bar


Hi everybody,I've been worried that you're worried about me.  Wednesday and
Thursday were rough, and I did feel as though I might never get myself back
together again.  Peter and I have been dreaming about a time when we would
get a much needed physical and emotional break, but that's just not in the
cards apparently.  By Friday I was rejuvenated and once again reacclimated
to the reality of Forrest's cancer and the threat that it poses.  Oddly
enough, I have gotten used to it on a certain level and I refound my
footing.  Just wanted to let you know that I did not, in fact, loose my
mind; I just thought that I might.

We have had a wonderful weekend.  Peter turned 40 yesterday and some friends
came around for dinner and it was a great night.  Forrest's buddy Lucia was
amongst the guests and she and he had a great time running around and
jumping on the bed.  It was delightful and sweet to watch.  Forrest was
thrilled to have her here.  It had been awhile, and I think he really needed
the time with his buddy to play.  His life is really good these days.  I
know he's enjoying it immensely.  I love seeing that. We've all but forgotten
cancer again.  YAY!

Tomorrow we go to Albany for routine blood work and another AFP.  We will
get the AFP result Wednesday and will decide what to do when we see where
that number has gone.  It may go down, but it is more likely to have gone up
judging from Forrest's history.  We have collectively decided that another
round of chemo is what to do.  He can handle it, and it may the one round
that gets us all the way to normal.  After that, we'll do radiation promptly
and be done with it.  The doctors are not as worried as we are, and are
still feeling good, but less good, than they were a few weeks ago.

I am off to bed.  Before I go, I must thank you again for all of your
communications these last few days.  It has helped enormously and I am very
grateful.  This particular step backwards was, I think, the hardest.  I
guess it's because we are painfully close to beating this thing, and because
I am so tired.

Much love to you all. Sleep well,
bar

Calling All Cheerleaders Again
Wednesday, July 18, 2001 -- 3:54pm
Posted by Bar


Well, it's not as bad as I thought it might be, but it's bad enough
that we're going back to Albany tomorrow for another round of chemo.
Forrest's AFP is 108, so clearly on the rise.  Everyone agrees that we
might be able to catch this thing while it's still small and get back
to at least where we were a few weeks ago.  As soon as Forrest's blood
has recovered from the chemo, we'll do the radiation that we have been
stalling on.  The assumption still is that if we give this cancer the
last final punch that we could still knock it out.  I think that we
need you more than ever now, so if you would be so kind, a prayer for
us would be deeply appreciated.  We are used to these
heart-terrorizers, as much as a person can get used to them, but we
are feeling less stable than we might.  I guess all of the celebrating
of the last two months made us a bit drunk.

In the meantime, Forrest is doing amazing things.  He is happy as can
be and very animated.  Today we put out many an imaginary fire in our
living room.  He loves firetrucks and loves those fires.  We always
get an imaginary bite-to-eat after a few of those tough blazes.  He's
a happy kid and for that I am glad and proud.  I want him to live.

We will be home Saturday night.  Thank you in advance for sticking
with us on this kind of unexpected step backwards.

Much love,
Bar

Feet and Other Mysteries
Sunday, July 22, 2001 -- 7:20pm
Posted by Bar


Forrest is sound asleep.  I've just done minor surgery on his left heel to
remove two fairly deep splinters he'd gotten from our deck this morning.  He
slept through the entire procedure.  Amazing!  How do children sleep so
deeply??  I am truly envious.  I mean, it's incredible.  I just took a
sterile sewing needle to his flesh and he didn't even wince!  At most, he
pulled back as though I were some annoying fly buzzing around his foot.
Once again I was reminded that fear is our biggest obstacle.  When Peter
tried to remove those same splinters while Forrest was awake, there was
absolutely no way.  Forrest saw the clippers, a needle and a pair of
tweezers and he very naturally fought back; asleep he was fearless.  (It's
also worth mentioning that I moved very, very slowly as I dug at his foot
and he slept.  Seems I'm always having to learn patience....)

So, while we're on the subject of feet and on the lessons learned from
caring for one's feet, let me tell you about the wart on my right foot.

"YUCK!", you say, but listen! I've learned a lot from that little annoyance
down there!

For example:  warts hurt.

Second, I've learned persistence from my wart:  When I was desperately
seeking a miracle for Forrest a few months back, I said to my wart and to
God, "if it's possible for a physical miracle to take place, I want you to
prove it to me!  Take this wart away!  Be gone with it!"  And lo and behold,
with each day, and with each attempt to erase the wart with my pumice stone,
the little bugger seemed to disappear.  A miracle!  Simultaneously, Forrest
was amazingly improved and life was remarkably normal and with a healthy
future in store.  My foot and Forrest's belly were healed!  Hallelujah!

But gradually I slacked off on the pumice stone.  I figured that if a
miracle had taken place, the stone and my foot's regular care were
unnecessary.  But you guessed it:  my wart has come back, and it hurts big
time now.  This time I know not to stop caring for the little root-system if
I want it to stop hurting me.  Perhaps the same is true for Forrest?  His
miracle, the fact that he is even alive today, is due to a lot of things
including persistence and care.  The miracle, and Forrest himself, have to
be tended to and not taken for granted.  Seems to me that even miracles are
part of a processand may not be instantaneous or long-lasting.  They may
very well be ongoing and in need of care and attention.  My wart will
probably subside again; hopefully Forrest's cancer will as well.

(See, even warts can teach us things!)

I have been in a surprisingly good mood these last few days.  We spent
Thursday through yesterday afternoon doing another roundof chemo.  Forrest
was/is stronger than he has ever been and he didn't miss a beat.  He was in
a wonderful mood, he slept well, and he played energetically the whole time
that chemo was running.  His teacher, Cheryl, came for 3 hours our first
night and he pretty much wore her out, I think.  We had a private roomwhich
was a lucky blessing.  (Thank you, Dr.  Porter, for getting that together
for us.  I will never forget you!)  The only difficult part about our stay
was dealing with the nurses' confusion when they saw us there again.  They
all naturally assumed the worst and approached us sorrowfully which was
AWFUL!  Understandable, but awful!  Their concern came on the heels of
another little boy's death the day before we arrived.  Dylan was diagnosed
with neuroblastoma around the same time as Forrest was diagnosed.  His scans
and blood work were clean at the end of May.  By this past Wednesday, he was
dead.  His cancer came back with such strength that there was nothing to be
done.  Hepatoblastoma can do the same thing, so we were all saddened and
unsettled by his death.  Our oncologist told us about Dylan as soon as we
arrived so that we would be prepared if someone else brought it up.
Difficult to cope with at the moment, as you can probably imagine.

When I heard about Dylan's death, I couldn't help thinking that his mother
must finally feel some relief despite her devastating grief.  At least now
he is free from pain, and she is free from the endless questions I know that
she had.  Now she has a whole new set of questions - most of which have no
answer.

Life continues to be full for us.  I still feel strong and full of faith.
In his sermon this morning, Tom Miller talked about the mystery of faith.
I'd never thought about that before, but I think it's true:  faith IS a
mystery.  When I got to thinking about it, I realized how inclusive that
notion is.  Everyone, regardless of their brand of faith, experiences the
mystery of faith.  The deeper any of us dig, the more mysterious it gets,
and, I think, the more faithful we become.

So, the mystery keeps me on my toes - somedays more steadily than others.

Much love to you all,
Bar

Hi
Friday, July 27, 2001 -- 9:30pm
Posted by Bar


Hi everybody.  I don't have much to report except that Forrest is doing
great and we're having a lot of fun these days.  He still doesn't seem
phased by chemo despite the number of rounds (13) that he has had.  We went
to Albany this morning to check his blood and everything was as expected -
low in the white blood cell category, but otherwise fairly normal.

Forrest's teacher, Cheryl, called last night around 7pm and asked for
Forrest.  When he got on the phone, she asked if he wanted to come over and
play, and of course he said "yes".  We finished dinner, and Peter took him
over to her house and they played for two very solid, fun-filled hours.
When I came back to pick him up at 9:15, he hardly noticed me, and it took
another 15 minutes to disconnect him from her train set and her very cool
piano lounge (midget sized) that she has created under a 3 foot ceiling in
her basement.  The lounge is complete with a teeny grand piano, couch,
over-stuffed chair and mirrors, all of which Forrest thinks is the coolest -
and truly, it is.  We came home and when he finally fell asleep at 11pm, he
didn't wake up until 4am.  which for me is a LONG sleep.  Much appreciated,
thank you.

As for his cancer, which is sometimes, if even momentarily, easy to forget
these days, hopefully the chemo is doing its thing and getting things under
control again.  I watch his scalp, frankly, to see if his hair's falling
out.  It is not so far, so I wonder if the chemo is working.  Time will
tell.  We'll go to Albany again on Monday specifically to draw an AFP.
Needless to say, Wednesday will be another very stressful day.

Plans for radiation continue and we are tentatively set to begin on the 13th
of August.  We will have to go to Albany every morning for 4-5 weeks for his
fairly low dose of radiation.  I am not psyched except for the fact that it
might be the icing on the cake in terms of western medicine's ability to
control hepatoblastoma.  In the meantime, I am actively pursuing nutritional
and herbal remedies that may prove helpful and even curative.  I am
increasingly convinced of the power of food and herbs for health.  I am
amazed at what is right outside my door that has medicinal properties.  My
friend Maiya is my guide, and she keeps pointing out the most incredible
things.

For instance, there's this great plant that grows on the hill alongside our
driveway.  I have never noticed it before this year, but a couple of weeks
ago, I noticed that there was tons of it.  How could I miss it?  It's very
tall and about an inch in diameter.  There were about 100 plants sticking up
from our land as I approached the house, and well, how can I say this?  -
our hill looked, well, rather excited in a male sort of way!  I asked Maiya
about it, and sure enough it's an herb (whose name I cannot remember at this
moment) whose medicinal use is cleaning the lungs.  WOW!  Then, a week
later, I noticed a beautiful purple plant also on our driveway, with a
spectacular butterfly sitting on it slurping up whatever sweetness the plant
had to offer.  When I came back from wherever I had been going, the same or
other identical butterfly was still on that same purple flower.  I actually
stopped to look at it and the butterfly because I could not believe they
were still together after a couple of hours.  Lo and behold, the plant is a
wildflower called Milk Thistle.  Its seeds are excellent for liver
detoxification and are specifically recommended for cancer patients who have
done cisplatin chemotherapy - which Forrest has had 10 rounds of!  AMAZING!
All of this adds up to magic for me.  I ordered some organic milk thistle
from a botanical garden in Maine that day, it arrived yesterday, I toasted
it, smushed it up, and added it to Forrest's pizza tonight.  (Ate some
myself too and it's really good.  It smells like coffee, and tastes like
nuts.  What could be better?)  So, I carry on with all of this great stuff
to learn.  If nothing else it keeps me involved and hopeful and full of
faith in the power of greater things.

I keep forgetting to tell you that I have scheduled two shows for this fall:
One in Bryn Athyn, PA (Peter's hometown, just north of Philadelphia) on the
6th of October.  The second show is November 10th in Kingston, NY.  I'll
post the information on my site soon for those of you who can come.  Jen and
Erica will be along for both of those performances.  I am also very pleased
to say that I am almost finished a piece that I was commissioned to write
for the Woodstock Cycle to be premiered over Labor Day weekend.  The
commission theme was to compose a portrait of a character from a sacred
story.  I decided to write about a regular person's sacred story on a normal
day.  This year has taught me about how powerful daily life is and I wanted
to look for inspiration in that fact rather than looking at history and the
sacred stories that can come from religion or mythology.  I am very excited
about the piece.  It's written for four woman voices and is tentatively
called "Wednesday".  It's a vocalise mostly, which is to say there aren't
many lyrics, just melodies, vocal sounds and harmonies.  I'll be singing
with two women I have not yet sung with, as well as Maiya, my herbal angel.
I can hardly wait to hear it live.  It may be a disaster compositionally,
but I don't think so.  It feels like it might actually work.  I'll let you
know......

Finally, I wanted to let you know that Forrest's meeting with Steve, from
Blues Clues, has been scheduled, and he is beyond thrilled about it.  He
mentions it all day long with such a look of glee and wonder that I can't
wait myself.  He asks me repeatedly what Steve is going to wear and I assure
him that I don't know.  The reason he wants to know is that, in the show,
Steve always wears a green striped polo shirt (which Forrest has a mini
version of).  Forrest wants to wear his, and he wonders if Steve will wear
his........I wonder myself.  Perhaps he'll bring it in a briefcase and
change when he gets to the restaurant we're meeting him in?  Who knows.  All
I know is that it's going to be FUN.  Make-A-Wish will send a limo for us on
Saturday the 15th of September, drive us to New York City for the night and
then we'll meet Steve for lunch on Sunday.  Afterwards the limo will take us
home again.  YOWZA!  It's going to be SO COOL!

I still think about you all all of the time.  I hope that you are having a
great summer.  Thankfully it's gotten cooler here again.  Last week was
brutal.

Much love,
Bar