Happy New Year!!
Tuesday, January 1, 2001 -- 9:28pm
Posted by Bar


We're snowed in.  It's beautiful outside.  And it's been bitterly
cold.  Forrest has had a blast playing with the bazillions of toys and
animals that he's received over the course of the last week.  He keeps
turning around in circles trying to get dizzy and saying "Toys!  Toys!
Toys".

We got an unexpected visit from Peter's sister, Mary, this afternoon,
and we're all thrilled.  Forrest adores her and they have been
giggling away since she arrived.  I'm just thankful to see another
human being - especially Mary.  All we have seen is each other for a
few days.  I needed some new energy.  Steve Stiert also stopped by
today.  You know Steve as my web-site administrator.  He brought us a
full collection of Harry Potter books on audio tape for our weekly
trips to Albany.  I LOVE YOU, STEVE!!  I am a Potter junky.  When I
finished book #3 last night at 5pm, I ran out to the local book store
and caught them just as they were closing their doors and got #4.  I
am not embarrassed to say that I look for every opportunity to read a
few pages.  Potter and his little magical world removes me so
completely from my life, that when I put the book down, I realize that
I am relaxed and calm about everything in my life.  I welcome the
break.  And I also realize that anything is possible from going into
his world.

We spent last night eating left-overs and generally being quiet.  I've
never been a big fan of the New Year's Eve-get-smashed approach to the
holiday.  Many years ago I worked in an emergency room as a clerk.  On
New Year's Eve, the number of awful accidents that happened because of
drinking and partying has frightened me away from driving anywhere
after 7pm that night.  Last night was no different.  I hope that you
all had a wonderful and uneventful night.....no accidents or mishaps,
I mean.....

Many of you have written with concern about Peter and me since my last
e-mail.  Seems I made things sound worse than they are.  It does get
tense, but we're ok.  We spent two hours at our healer's house
together last Thursday.  This is the same man that we go to with
Forrest.  We decided that we needed some healing ourselves, so we got
Forrest's friend Hannah to come over while we got some much needed
insightfrom John into what we are dealing with.  It has helped a lot,
and we are both doing much better.

Seems to me that much of what we all struggle with in relationship is
simply making a decision about how to be with one another.  I mean, I
can say to myself "I am going to try and be more loving and
understanding", or I can say "You know, Peter really makes me mad and
I'm going to be lousy to him".  I feel strongly that we make our own
choices and that we can change the way things are.  I also feel
strongly that Forrest's emotional environment is critical to his
healing.  If Peter and I are on each others nerves all of the time,
Forrest is going to feel that and he is going to respond negatively.

John, our healer, would go so far as to say that liver cancer is
directly related to anger.  I tend to agree, but I also know that
nature is very powerful and that no one is to blame for Forrest's
cancer.  Peter and I do have an obligation, however, to deal with our
anger and irritation - if not for ourselves then for Forrest.  I have
also started back to the gym and I go every other day.  Oddly enough,
with every round of weights that I lift, I realize for another moment
of the day that I have forgotten what's going on in my life and I feel
much better for it.

I do have a lot on my mind today.  Mostly it's good stuff.  I feel
very full of life and love.  Forrest continues to amaze me with his
energy and his joy.  He's talking up a storm and he's doing puzzles at
an impressive rate.  He somehow picked up how to say "please" and
"thank you" and is really sweet about it.  It's fun to say "you're
welcome, Forrest" in response.  I asked him about his angels last
night - something I do every night.  There seems to be only one around
these days.  The others have "gone home" according to Forrest.  The
one who is still around sings a lot apparently, and Forrest reports
that he's there all of the time.  He says that "Boy" (that's his
name.....he's a boy now), is an angel that he knew when he was in
heaven.  He seems to have deduced that he came from heaven originally.

I have come to some really comfortable feelings about the notion of
heaven.  Needless to say, none of us knows for sure what will come
next after this life.  I've never been one to take much stock in an
actual location called heaven.  But I find myself increasingly
delighted by the idea that there is an after-life and that we are all
somehow re-joined with loved ones some time in our future.  This
sounds kind of casual, I guess, but I don't see what the harm is in
finding comfort in that concept and to look forward to it.  Do you
think that the whole thing was designed with that purpose in mind?  I
mean, could heaven be a somewhere that we humans have devised as a way
of coping with loss....(maybe with God's consent - even His
assistance??).........

It's great stuff to think about.  When I talk to Forrest about his
angels who are consistently around for him, I cannot help but believe
that he knows more than I do about such things.  On a more earthly
note, we are off to do another and definitive cat scan on Thursday.  I
am strangely calm about it.  Looking forward to the future and wanting
to get on with it.

Much love to you all and to your families for the new year.  And thank
you again for staying with us all of these months.
Much love,Bar

The news
Friday, January 5, 2001 -- 8:28pm
Posted by Bar


The news is not so good from here.  The cat scan Forrest had yesterday
was a shock to all of us including his oncologists.  The tumor in his
liver is about as it was last time they scanned it, but the lung
lesions are not only bigger but more numerous.  His AFP, the bloodtest
that measures the life of his cancer, rose sharply to 15,000, and it
appears that the topotecan, the new drug we were trying, was
ineffectual.

So, we've lost ground.  We are all in shock.  Forrest is and has been
so full of life.  We've be en enjoying him being completely himself
this last month.  These results are not at all what any of us
expected.  So, the option of doing lung surgery is out, as is the
option of a liver transplant.  His doctors have suggested one more
round of the original chemotherapy to see if we can at least get back
to where we were a month ago.  We will begin that on Monday.  We have
jointly decided to increase the dose of one of those drugs and hope
that we really get this thing.  I guess you could say that we are at
the end of the medical rope that we have been holding on to thus far.
There may be more chemo to keep the cancer in check, but surgery is
not possible.  We will do chemo until chemo no longer has an effect.

I am such a mix of emotions.  I was devestated yesterday.  I never
thought that the situation would be worse just now!  I had considered
that we would maintain what we had gained for a short while.  I was
very ready for a miraculous outcome.  But to be setback!  I just
couldn't stand it.  I woke up crying this morning while Forrest slept
peacefully beside me.  He seems no worse for wear.  Still comfortable.
Still happy.  Still full of curiosity and love for this little life he
has.

Last night, Peter and I sat down with him and explained why we
were so sad.  We told him about the cat scan results and his AFP.  We
told him we were very sad.  And we asked him if he was sad.  He said,
"happy" like we were nuts or something and continued on with the
puzzles he was working on.  (He does four at a time and sorts out all
the right pieces.  Amazing!)

When I got into the shower this morning - typically the place where I
am free to cry full-tilt and where I have a quiet moment to sort out
my feelings - I rediscovered the calm that I have found throughout
this ordeal.  I realized that, in fact, some of my prayers have been
answered.  I really have not wanted surgery all along, and here we are
at exactly that juncture.  There is still much life in Forrest and
there is still much love and fight left in me and in Peter.  Yes.  A
quick and peaceful end would be easier and in some ways welcome.  But
that's not really how I feel about it.  I see this as an opportunity
to cause yet another miracle in the universe to happen.  As I have
said all along, love is very powerful indeed, as is a will to live and
people around who support the quest for life.

To some of you, this may sound nieve or as though I am in denial.  I
hope not.  I feel like the test of a lifetime is before me and that I
must rise to the occasion and take that test.  Peter and I are in
agreement about all of this.  We can listen to what the doctor's
conclusions are and begin our good-byes, or we can take steps for life
to continue.  It is most important that we have support, and we are
actively pursuing that.

We asked Mary, Peter's sister, to come back up for the weekend.  She
just arrived.  My parents will be around soon, I hope, and we still
need and love to hear from all of you.  What we need most specifically
is encouragment and positive communication from everyone just as you
have done so well thus far.  I don't know the outcome.  No one ever
does.  But I do know that while Forrest is alive - whether it is 2
months or 20 years - I want life to be lived.  I do not want to be
preparing for his death.  Because surely if I begin to prepare for his
death, his death will come.  We read about cancers disappearing, and I
believe that that is possible.

I have been in contact with John, our healer, this morning and we will
see him this weekend.  He feels as I do that this whole situation is a
wonderful opportunity for healing.  Healing for Peter.  Healing for
me.  And healing for Forrest.  As he says, the doctors base their
assessments on numbers and test results.  He reminds us to thank God
for their knowledge; but also to remember that there is much more to
life than numbers.  When he asked how Forrest was today, I told him
that he seemed to be great - running around, laughing, jumping on the
bed, eating, drinking, and puzzling as usual.  His response was,
"remember that the truth is what is actually happening, not what might
happen."  Cheers, John!

Forrest is doing great!  So, for those of you who see us regularly, I
hope that you will continue to look at the three of us with loving
eyes and not with sorrow.  It will take all of our focus to stay in
the moment and remember to remember just exactly what is happening and
not to dread the future.  In the meantime, we have prepared ourselves
for the future in so far as we know that we can get pain meds if
Forrest should begin to suffer at all.  Last night it was his teeth.
Those nasty molars just won't leave him alone!  Tylenol did the
trick...

I feel oddly strong today.  I love the fact that I know life is
incredible despite the pain of it all.  I don't know where that
clarity or strength comes from.  I sometimes wonder if, in fact, I am
in deep denial.  And my answer to myself is, "maybe; but if it keeps
me sane, I'm all for it!"  I am not always strong.  I am often a mess
and the undercurrent of this whole situation has certainly aged me a
number of decades, but I think that the human spirit is strong and
that we do what we must do expecially when our children are in danger.
I look to Forrest for what is true and for my strength.  Amazing how
little people can inspire such courage.

Happy New Year to you all.  For us, it will be an enormous one.  Thank
you for adding to our strength and for coming along for the ride.

Much love,Bar

hi
Friday, January 12, 2001 -- 9:18 pm
Posted by Bar


Hi everybody, Just wanted to let you know that we are doing very
well. I'm just taking a little time to get my thoughts together
before being back in touch.

Thank you.  Thank you.  Thank you for all of your messages.
With love,Bar

Owls and Other Thoughts
Wednesday, January 16, 2001 -- 5:58pm
Posted by Bar


I've been procrastinating on this e-mail.  There are lots of good
reasons.  Mostly, I have been questioning the wisdom of disclosing the
situation that we are now in to you.  I realize that it is impossible
for you all not to be grieving with us.  And at the same time, I need
you to understand how important it is to me and to Forrest and Peter,
not to let grief be the dominant emotion in our lives.  As I have said
over and over again, Forrest is doing great.  He's in good spirits.
Full of life and joy and energy.  He is unaware of the severity of
things.

Last week I did not write because I wondered, too, if my continuing to
write these e-mails somehow perpetuated the drama and difficulty of
the situation.  I wondered if perhaps the whole thing would resolve
better if I focused exclusively on healing Forrest and not on sharing
my inner life with you all.  After 10 days or so, I realized that I
need you all more than ever, and that it would not have been right not
to tell you the truth about things after 6 months of honesty.  You've
all been so supportive and have made our journey bearable, simply by
being there.

Now, two weeks later, I am glad to be here again.  I feel good.  I
feel liberated in many ways and I am feeling surprisingly calm about
it all.  It's so hard to explain.  Perhaps you think I'm nuts or
something, but it's true:  I have never felt the intensity of joy that
I am feeling now.  I have never been so close to faith and to God.
It's a moment-to-moment thing.  Everytime I look at Forrest, I am so
overwhelmed by his spirit and his capacity for life and love.  We are
facing the challenge of a life time and I am excited by the
opportunity; terrified of it too!

First of all, we're getting to the end of chemo.  I cannot tell you
what a relief that is to me.  I have concluded that the course of
western medicine against cancer is incorrect.  I know that chemo is
powerful stuff and I am immensely grateful for its saving Forrest's
life in the beginning of this ordeal.  But ultimately, I do not think
that we/they are on the right track in treating cancer.  Hospital life
in America is not designed for healing and neither is the medicine
that is often used.  I say this with respect, truly, but I think that
our hospitals are designed as sort of mechanic shops:  you take your
body in and they fix it - or try to.

Healing, true healing, is a much bigger thing.  It involves the spirit
and the mind as well as the body.  Healing has to do with quality of
life not quantity and our hospitals are not looking at that.

This is why I say that I am relieved to be done with chemo.  I want to
get away from the hospital.  I want to use my energy to heal not only
Forrest, but Peter and me as well.  I am convinced that the mind and
the spirit are very powerful things.  Forrest proves this over and
over again.  We could spend the next few months pursuing every new
drug, every potential surgery, and every available therapy and that
would be as risky as stopping all of that and spending our energy on
life and on non-invasive therapies that would be equally (if not more)
effective.

Some people think that I'm giving up in some way.  I assure you that,
more than anything I have ever felt in my life, I am not giving up.  I
am fighting with every ounce of my being for Forrest's life.  But it's
going to be on my terms, in ways that feel right to me and do not hurt
Forrest, and that bring meaning to all of our lives.

I feel now more than I have this entire 6 months that Forrest can
live.  And in fact, he is doing just that.  When I say that I hope
that your grief (and my own) are not the pervasive emotion in
Forrest's life, I am asking you (and me) to be strong in your
convictions about life; be sure that Forrest can live and treat him
that way.  Treat him and me and Peter as though you have every
intention for Forrest to live.  This is truly powerful.  I can tell
you this with a full heart.

It makes an enormous difference to us when people approach us with no
doubts.  I know that I cannot control your private doubts and grief.
I have them, and they are a natural part of life.  I do hope, however,
that your sadness will allow you to feel all of the other wonderful
things and people around you.

I feel as though I am lecturing.  I cannot tell you what to do.  I am
asking though - begging, even - for life to go on as usual......

We are doing all sorts of cool things to help Forrest beat this
cancer.  The main thing is "Owl".  Owl is a puppet that I thought of a
couple of weeks ago.  I was just falling asleep and I was thinking
about what I would do if I were faced with a life-threatening cancer.
One of the things that I would start immediatly would be
visualizations of my body healing and of the cancer cells disappearing
etc etc.  Visualization and meditation have proven to be very
effective with cancer patients.  Well, try teaching a two-year-old to
meditate or visualize such a thing!  It occurred to me as I drifted
off to sleep that if I used a puppet, I could walk Forrest through
visualizations and that he might actually enjoy the whole thing.

BINGO!  He loves it!  He loves the owl, which he
picked-out and whose nickname is "Cancer".  We call him the
cancer-removing owl.  He very boldly flies in several times a day -
generally as Forrest is just waking or as he is about to rest - and he
asks Forrest if he would like his liver and lungs to be cleaned.
Forrest agrees to the "treatment" and then Owl goes about cleaning his
organs with his wings and a little blue light.  Then we fill his lungs
with golden sun light, take a deep breath, tickle his chin, and Owl
flies off and disperses the ever-smaller cancer cells out into the
snow.  Forrest and I say "Good-bye, Cancer.  Thank you for coming, but
we don't need you anymore", and then Owl flies in again to clean
Forrest's liver, he repeats the snow bit, and flies in again for a big
hug.  Forrest LOVES it and he is quite convinced that it is working
and I KNOW that that is powerful.  He said to me yesterday that he did
not have cancer anymore.  Hmmmmmm...wonder if he's right.

I guess you could say that my goal at the moment is to live.  Life is
short.  We all think that we have to erradicate cancer, and we'll go
to outrageous extremes to literally cut it out of our bodies.  I don't
think that this is necessarily the best approach to life.  To me it is
much better to be grateful, go into whatever therapies you decide are
right for you, look for healing (as opposed to curing) and get on with
the business of living.  The will to live and love, is so, so
powerful.

I'm frustrated with my writing today.  I feel preachy like I'm trying
to convince my self of something.  Maybe I am.  Maybe I have to.  The
bottom line is that a person (Forrest) can live with cancer.  He will
only die when he dies, and I don't know when that will be.  For all I
know, God's will and Forrest's will will carry him through this thing
even with the cancer still in his body.  That doesn't bother me one
little bit.

I confess that I still hope to wake up from this horrible dream.  It
seems so impossible.  Even today, Forrest's immune system is very
weak, but we went swinging at his school, went out for breakfast, saw
a bunch of friends at the bank, hung-out, played, jumped, laughed and
tickled each other as if nothing was bugging him at all.  Is it
possible that's he's sick?  Don't be fooled, though.  I think about
all of this in every moment of the day and that is the most tiring
aspect of it all.

I hope that I have made some sense today.We're going to Florida for 5
days in a couple of weeks.  Peter's sister, Mary, and her family
invited us to join them in Orlando.  I'm scared, but I'll be glad for
the sun.  I find it harder to heal when I cannot get outside as easily
and it's been yucky around here this winter.

Thanks for listening.  I suspect my letters will not be as regular
now.  Please be sure that we're doing ok.  I'll let you know if
anything major happens.  I feel as though I need to spend a little
more of my free time writing music again or practicing.

Finally, in case you don't know, if you respond to this or any of my
e-mails, your messages are sent to Steve Stiert, my good friend and
web-site administrator, who then faxes them to me every other day or
so.  Your messages are private unless you post them on my web-site
where, literally, the whole world can read them.  What a thought!

I'm off.  Have a great week.  I'll be in touch in a week or so.
Love, Bar

January 23, 2001
Tuesday, January 23, 2001 -- 4:31pm
Posted by Bar


We are having a great day.  It's crystal clear out.  Cold.  And not
windy.  Forrest and I went to school today for the outside portion of
the kids' morning.  We saw all of his buddies and we swung up to the
sky with Emma and Lauren, two of his classmates.  The three of them
like to swing very high, and they like it when I push them.  I am not
concerned with how high they go.  Other parents are more cautious.
They squeel.  They say, "up to the trees" and then they squeel some
more.  It's great fun.  Forrest was in heaven.

He hasn't been with his buddies too much since before Christmas.  It's
the downside of having no immune system.  After school, we did our
errands - the post office, bank and lunch - and then met Peter at home
and took a long walk in the cold sun.  Then, because the day is so
wonderful, we swang some more on our big swing that glides out over
the cliff of our property.  Forrest has been longing for that swing
since we put it up back in July.  It hasn't been warm enough to use it
for a couple of months.  To day we thought it needed a work-out.  More
squeels and a snowman resulted.  Peter is the master snowman builder.
Forrest, like most little kids, LOVES snowmen.  Magic.  They are pure
magic.  So now the little man is fast asleep (with his owl right next
to him!). (Is it, 'swang'?  or 'swung'?  or 'swinged'? Hmmmmm?)

There's not much to report.  We're looking forward to Disney World
next week.  Forrest is particularly keen on meeting Winnie the Pooh
and Tigger.  I am looking forward to warmth.

Many of you have sent us ideas for cures, remedies and testimonials
for us to consider these last six months.  We have read all of them
and decided a while ago that we would follow our instincts when
deciding what things to try and which to postpone or ignore.  One of
the most common recommendations has been a herbal tea called Essiac.
We put off trying Essiac because we thought Forrest would protest the
taste.  Our oncologist agreed that Essiac does have positive results
for liver cancer.  (She described it as "relief" and told us not to
look at it as a "cure".)  Anyway, we finally got a hold of the herbs
from a local organic gardner and have begun giving Forrest twice daily
hits of the stuff.  He loves it!  Drinks it right down!  Amazing.
Smells and tastes pretty earthy to me, but he has always loved tea and
so, he just drinks it.

Owl continues to do his very best work on cleaning Forrest's liver and
lungs.  I swear that every time we do those visualizations together,
his cancer simply goes away.  It's a very powerful phenomenon.

The other cool thing that happened happened to Peter:  We have a
little log cabin where the pump for the water to our house lives.
That cabin has to be kept warm all winter so our pipes don't freeze,
which means that Peter has to stoke the wood stove out there 3 or 4
times a day.  A week or so ago he was taking care of the fire and he
was strongly compelled to look out the window.  When he walked over to
the window, he noticed a stack of videos that we had left out there
when we were living out there and building t he house we live in next
door.  Again, he was strongly pulled to look at those videos.  Amongst
them, was a video that Peter reports, sort of jumped out at him.  It
was a video called "Hope and a Prayer".  It's a video interview with
Bernie Siegel whom many of you may have heard of from his book "Love,
Medicine and Miracles".  Neither of us remembers why or how we have
that video, but what is so interesting is the strength of the pull
Peter felt to go find it.  This sort of thing doesn't happen to Peter.

We watched the video that night and it was exactly what we needed to
hear.  Bernie is an oncologist and a surgeon who looks at his patients
as human beings and considers their emotional/spiritual needs as well
as their physical needs.  He is a very positive man.  He describes
exceptional patients and as he did so, I realized that Forrest is one
of those exceptional patients.  He describes his observations of
patients with good attitudes and strong convictions and I felt so
grateful.  This is the quality of life thing that I have been talking
about.  Thank you, Bernie!  It's just nice and reassuring to see a man
with a white coat on speaking in a way that I understand......

We also saw a Tibetan Doctor and herbalist on Friday night.  Some
local friends set that up.  He was sweet and lovely.  He agreed that
we should stick with chemo.  Other than that, we did not understand
too much of what he said because he was so quiet and his accent was so
strong.  The visit cheered us up, though, because of his generosity of
spirit and his sweetness.  And who knows, maybe his powerful hands -
he's one of the Dalai Lama's doctors - had a healing effect on
Forrest.

All of these experiences and adventures add up to good fun for us and
also add to our living experience.  There are monks in Tibet praying
for Forrest.  There are candles lit in cathedrals in Europe.  There
are kids saving their change for Forrest in Philadelphia, and there
are many, many of us praying and thinking about his life in all sorts
of different ways all around us.  It's all very powerful and is
definitely keeping us on our feet.  I hope that none of you are ever
in this position yourself, but I want you to know, too, that there is
a lot of wonder in it all.

I hope that you are enjoying the warmer weather where you are.
With love to you, Bar