Thursday
Thursday, November 1, 2001 -- 5:22pm
Posted by Bar


It's Thursday, the day after Wednesday, which means we got Forrest's AFP
results yesterday.  It's not as bad as I thought it might be, but from a
medical point of view, it's not good.  His number is now 1000.  Oddly
enough, he's healthier and more energetic and full of life than ever.
Everyone who sees him comments on how well he looks and how well he is
doing.  His teacher called me just because she wanted me to know that he is
in no way behind his classmates in school.  He's climbing with the best of
'em and doing all the things that 3 year olds do.  Peter and I are ok.  We
both thought that the results could be still harder to bear.  I guess you
could say that we have gotten used to bad news and the roller coaster that
cancer is.  This time I didn't even cry.  I just sort of held my breath and
kept getting ready for Halloween as though nothing had changed - and in
fact, nothing had since the moment before the doctor called.  It's terrible
how a little medical information can completely disturb my sense of peace.
I am determined to rise above thatthis time and just see what's actually
happening as the real truth.  So, I repeat, Forrest is doing great.  He did
ask me several times yesterday when he was going to die.  I'm convinced that
on some level he knows what my thoughts are.  It's very unsettling when he
asks that question on the days when I am thinking about that possibility
more.  I am so glad that he is as young as he is because he has no fear of
death or of cancer or of anything really (although the ghosts in scary land
kind of scared him last night.....)

Anyway, here we are.  The tests of faith that I have talked about all along
are really pressing in on us now.  In many moments I am very strong:
comfortable with death, confident about the possibility of a miracle and
generally centered about what is happening to my family.  In other moments,
mostly in the middle of the night, I feel less good and I cry and I worry
and I wonder about where God is and what death will look like if Forrest
begins to die.  I try to stop myself from thinking like that, but it's
natural for me to go there.  I also think that it is helpful in a way
because I find that it's really not as bad as I might have thought it would
be.  I have this strange confidence that even if Forrest should die he will
do it well.  His whole life he has lived so gracefully and with such
inspiration for all of us.

Before I talk you, him or me into dying, I want to let you know that we were
finally able to meet up again with John Carroll, our healer, over the
weekend.  Our schedules have been incompatable for a number of months so we
haven't seen him.  I'm hoping to see him regularly now.  It was really,
really great for all of us to reconnect.  He was talking to another client
when we arrived, and I overheard him say what I needed to hear which was
something like "where there is faith there can be no fear".  I know this is
true.  On the days that my faith is strong I feel like anyone could tell me
anything and I would hold steady.  On my fear-filled days I can feel the
life being sucked out of me.  John was thrilled to see Forrest.  In the time
since we last saw him, Forrest has grown so strong and he has so much hair.
When I look at pictures of him from even a month ago I am shocked at how
sick his hairlessness made him look.  Peter and I were laughing about how we
never even noticed that he did not have hair.  He still looked like Forrest
to us - beautiful as can be.  Butnow with a noticeable head of hair he looks
like he would have looked all along.  It warms my heart.

I don't know what else to say except that I love you all.  Thank you for
being out there.  Keep up your prayers if you are saying them for Forrest.
I think that it makes a huge difference and I can't explain that.  I find
that I want to know more than I do about God and about the power of prayer.
I still feel that Forrest is going to make it through this thing.  I don't
know how, but I still feel that way.  I hope that I will always feel that
way because it's a whole lot more fun than thinking he's not going to make
it.

And I hope that you had a scary Halloween.  We had a great time.  Forrest
was a pumpkin, I was grapes and Peter was a ghost.  Forrest finally
understood the whole trick-or-treat thing and was really excited by all the
presents and candy he was getting just by being cute as we walked through
Woodstock.  He wants to be a fairy next year so that he can dress up in
purple - his favorite, favorite color.

Much love to you all, Bar

PS So many of you asked what Steve wore when we met him in New York.  He DID
wear his green shirt and his cacky pants.  He also sported a vague beard, a
very short haircut and a baseballcap.  He called us in advance to make sure
that Forrest would be ok with his beard.  Since Peter has one, Forrest
didn't mind a bit.  Steve's working on a rock and roll project for which
he's decided to change his image a lot.  Can't blame him.  It would be hard
to stay in the Blue's Clues' Steve role for the rest of his life.  I think
that Steve Stiert may have posted some new pictures on my site including the
only one (out of five rolls of film) that I took of Forrest and Steve.
Ooops!

Friday
Friday, November 9, 2001 -- 11:21am
Posted by Bar


Good morning,

It's been over a week since I've been in touch.  Seems these days that my
free time is screaming to be filled with music and not with writing words.
There's a lot of emotional energy that needs to be expressed through playing
and hearing music.

That said, I must add that I'm doing much, much better and so is Peter.
Forrest, as usual, is incredible.  He's so inspiring.  On Wednesday his
teacher asked if he could stay the whole day at school (rather than just the
morning) and then a couple of hours after school so that she could really
play at length with him.  He and I were separated for 8 hours - the longest
stretch to date.  I was a wreck, but Forrest, Duracell that he is, didn't
even want to quit playing when I went to fetch him at the end of the day.
It was a real breakthrough for both of us.  The most exciting thing for
Forrest was staying the extra three hours in the afternoon with his
one/two-year-older classmates.  They "visited" China and learned a lot about
that country and, as you know, he loves geography.  He's the one who showed
everybody where China is on the globe.  He really keeps me clear about how
much he is alive and well.  As for me, it was great to have a whole day to
work in my studio, do some medical research for hepatoblastoma and just
generally slow down my pace for a few cherished hours.  Thank you, Cheryl!
(Forrest's teacher).  You continue to be an angel for me.

Speaking of angels, the other night I was at a weekly pot-luck supper at my
church - something I love to attend.  Just before we ate, I spoke up about
why we never said a prayer before dinner.  I don't say prayers before dinner
myself, but my parents always do and I just wondered since we were at
church, why we chose not to give thanks before we ate.  I guess I was
feeling the need to do just that.  We did say grace, ate, and then one of
the other women there said that a study had been done on the frequency of
food that is prayed over VS food that is not prayed over.  Sure enough,
there is a difference - presumably for the better when it is prayed over.
That fact has really stuck with me.  It's like the fact that people who are
in hospitals that are prayed for - even if they are not aware of the prayers
- do better than patients who are not prayed for.  What IS that??  I can't
answer my own question except by saying that it's God somehow.  The fact
remains that these are both supportable facts.  WOW!  I still forget to pray
over my food simply because it has not become a habit.  But Forrest, even
without knowing anything specifically about prayer or its purported
benefits, has a very natural way of praying before almost every bite he puts
in his mouth.  As you know, Angel is with him all of the time.  These days,
Forrest takes care of my angel too, and he carries both of them in his hands
at all times.  Before he eats a bite, he puts both hands palm side up (where
Angel and my angel are standing), feeds them both first and then consumes
whatever it is he is eating.  It's beautiful really.  So kind and generous.
And the other cool thing about it is that it reminds me to be thankful for
all that I have as I am eating.  Sometimes he wants to feed not only the
angels but any animals, trucks, submarines or coloring books that are
currently being played with at the table.  It's a great habit, and I am
learning from him once again.

The other very rejuvenating thing that has happened this week is that a
woman in the mid-west whose daughter is in the same boat as Forrest, got in
touch with us.  She's an incredible woman and she's done extensive research
on the internet to find a cure for her daughter.  Some of the things she has
discovered are controversial, some are really not, and all of her research
gives me continued hope that we can beat this thing called hepatoblastoma.
Mostly, I am relieved to have an ally whose motivation is the same as ours
and who is deeply committed to her mission.  She's sane and smart and kind
and I am grateful for her work.  We're in cahoots to look into some
non-invasive therapies that may actually work in our children's cases.  I'll
let you know how things turn out.......

I also wanted to share that Peter and I had a couple of hours to ourselves
on Monday morning and took the time to sit down and talk to one another.  He
had not slept the night before and was pretty exhausted.  We finally shared
the details of what makes us sleepless these days.  Mostly we suffer from
trying to put images on Forrest's potential future:  what kind of pain will
he experience if he begins to die?  What kind of funeral?  Where will he be
buried?  What will we do with all of his toys?  etc etc.  In the middle of
the night, tons of these sorts of questions come into our minds and
tiredness makes it nearly impossible to snap out of it or to try to change
the thoughts into positive, life-affirming images.  We both struggle this
way.  Then we torture ourselves for thinking these things when we mean to
invision a long and healthy life for Forrest.  Anyway, FINALLY, Peter and I
shared our thoughts in detail.  During the conversation, we decided that
perhaps we would sleep better if we actually made some decisions about all
of that stuff.  So, we did.  We called the funeral home to have a few
nagging questions answered, and we called hospice so that we understood what
their job is.  Now, it must sound awful to you to hear all of this, but it
was SUCH a relief.  Much of what they told us was not what we expected.  It
was more comforting than we thought it would be.  Hospice, we learned, at
least here in New York, is very interested not in just the final days of
death when all they can do is administer morphine, but in being involved as
soon as conventional medicine is done with its work.  Their philosophy is
that there are still many choices when medicine is done and that they want
to be an ally in choosing life by using all possible means.  I was so
grateful.  And they were grateful for our call because now they can do what
they prefer to do which is to help us LIVE not help Forrest die.  I feel
like I got loads of help this week and I am very grateful and saner for it.
I see now why people really must plan for their own death:  draw up a will,
talk to the necessary people etc etc.  I am so completely relieved about
those details being dealt with that I have been sleeping much, much better.
Peter and I were even joking about some of it by the end of the morning, so
our marriage was greatly helped too.  I hope that you are all well and
enjoying this fabulous fall weather......at least that's what we're
experiencing here in the northeast...

Much love, Bar

PS One of the great things that the woman at hospice said was that
preparation for death is not the same as resignation.  She's right.

Saturday the 17th
Saturday, November 17, 2001 -- 5:39pm
Posted by Bar


It's coming up to Thanksgiving and there is much to be thankful for.  This
time last year, I was not sure that Forrest would still be with us on this
coming holiday.  Despite the painfulness of life with cancer, it is also a
remarkably powerful time and we have enjoyed living througout the year more
than we ever have before.  Thank you all for sticking with us and making it
all the more bearable and even wonder-filled.

About an hour ago, Forrest's teacher called and asked if Forrest could come
over to play.  It's Saturday night and Peter has been in Albany all day
doing a woodturning workshop, so I was glad for all of us that Forrest could
go out tonight and keep playing with his great buddy, Cheryl.  She's an
amazing woman.  He lights up the moment he knows she's on the phone.  I feel
as though her gift is literally the gift of life and there is nothing more
important to us now than that.

So, here's the news:  Forrest had a CT scan on Thursday to identify where
the tumor that was obviously re-forming was actually growing.  Two nodules
are visible on his right lung, and as bad as that sounds, it was in many
ways a relief.  I had imagined a worse situation - like a tumor in his heart
or his liver or elsewhere in his abdomen.  His tummy is clear and the two
nodules on his lung may be operable.  We are not sure yet what if anything
we will do about his lungs, but we are in touch with his surgeon at
Sloan-Kettering.  Once the Dr's had a chance to review the scan and make a
decision about the viability of surgery, we will decide if we think it's
worth doing.  The cancer is likely to grow back on his lungs (statistically
speaking), so removing these spots does not guarentee anything.  On the
other hand, there have been children who have ultimately prevailed against
hepatoblastoma with several lung surgeries to remove mets as they appear.
The thought of surgery again makes me nuts, but the truth is that Forrest
tolerated the last lung surgeries very well, and they were just after a
radical liver resection and in- between two intense rounds of chemo.  His
body was pretty tired then.  Right now, he is very, very strong and I think
he would do just fine........We'll see.  If we do decide to go for the
surgery, it would happen soon - like next week......Needless to say, I will
let you know.

I feel calm today.  Yesterday I was a mess until I vented all of my anger
and my fear and madness on my mom who was good enough to call at the perfect
moment.  Nothing like an all-out cry to make me feel better.  It's funny
that at this point in our journey, a doctor or a test couldn't tell me any
worse news than I've already had or that I have been told to expect or that
I've imagined.  The possibilty of Forrest's death is no more or less real
than it was on July 19th, 2000.  The thing that makes me crazy most of the
time now is the instability of my faith.  I get really mad that I can't
count on anything and that I really don't know where God is or what I'm
praying for or what I need or want.  I have this strong sense that Forrest
can live, but what THAT means is that I have to find the missing piece so
that the puzzle can be successfully put together.  The other day I was
talking to another mom whose daughter has hepatoblastoma, and she told me
about a drug that's available if you know where to look that could be the
answer to our prayers.  The name of the drug is graviola.  When she told me
the name, I started to laugh about how it MUST be the answer - the clue I've
been looking for - because Forrest practically lives on ravioli.  She
laughed along with me because as it turns out, she is driven mad by her own
game of find-the-right-remedy-and-your-kid-can-live-too!

I was given great comfort this week by another mom of a kid with cancer.
She was referred to me because we are thinking of using the product that
this woman swears saved her kid's life.  Her energy and her positive twist
on this whole cancer thing was so uplifting that I felt downright lucky by
the end of our conversation.  She has 7 kids and her 5th is the one who got
a very rare cancer.  He was given one month to live without chemo etc, and
less than a 1% chance of living even with chemo and radiation.  After all
conventional treatments failed and after a brutal year of very uncomfortable
chemos, she found this supplement and the kid immediatly turned around and
is alive and well today six years later.  WOW!  It can happen.  And she did
all of this with 6 kids (her sixth was born 4 weeks before the one with
cancer was diagnosed!)  I'm tellin' you, life is incredibly hard for all of
us.  What was most impressive and inspiring about her was her attitude and
her faith and her confidence that her child could and would live.  She
decided early on in their journey that the doctors did not and could not
know everything; that there was a whole world full of knowledge that was not
at their fingertips and that she could uncover it.  She also has a very
powerful sense of who her God is and I think that that is enormously
powerful - if not the most powerful part of this whole thing.  (I am
beginning to see how that is true for all of us regardless of whether some
life-threatening disease is in our midst or not).

The other day, Forrest and I took a walk in the woods next to our house.  It
was a warm and spectacular fall day and I asked him if he would like to see
the place where I thought God was.  There's a spot in our woods where the
path turns 90 degrees in and around very tall white pines.  When the sun is
shining, I KNOW that God is there.  It is filled with Godliness for me and I
go to that spot as often as I can these days.  Anyway, he said, "sure" the
way he always does.  When we got to the spot, we sat on opposite sides of
the path on a couple of logs that were lying around.  I told him why I
thought God was there.  I asked him if he thought He was there too.  "Sure",
he said.  We talked to God a little bit, thanked Him for a bunch of things,
and then got up to leave.  Forrest asked me if I would carry him piggyback,
and I said, "sure", and off we went.  As he was riding along he asked "is
God coming with us?"  And I said "yes, I think He is" and in that moment I
knew that He was.  Forrest's question reminded me that if I remember to
remember, God always does come with me.  When I have dark and lost moments
like I did yesterday, questioning the whole business and generally pretty
confused and crazed, when I finally scream out and put it to Him (God), I
always feel better.  I always re-learn that He's there and that all that I
am doing is part of the plan.  I guess I just want to know the plan so that
I have the control........is that what I'm learning after all of this time??
Am I supposed to be learning to give up my control??  Who knows.  Anyway I
look at it, I AM losing control.  I have none except how I choose to live
and how I choose to handle life with cancer.  I'll tell you, it's a whole
lot easier on the days when my faith is secure.

I don't know that I've made any sense tonight.  I'm pooped and fried.  If I
don't have a chance to be in touch before Thanksgiving, have a peaceful
holiday.  We're off to Philadelphia to celebrate with both sides of our
family.

Much love to you all,
Bar

No news is the news
Wednesday, November 28, 2001 -- 10:47am
Posted by Bar


Good morning,

I hope that you all had a wonderful Thanksgiving.  Ours was good and full.
Forrest had a great time playing with all of his cousins and with friends he
has made along the way.  The only scary part was the 103 degree temperature
he got on the way to Philadelphia on Wednesday.  Fevers are not things we
like because of the central line catheter that he has going straight to his
heart and blood stream.  Fevers can mean infection; infection in that line
can mean quick death if not caught immediately.Thankfully, Forrest has never
had a fever or an infection throughout chemo or radiation.  That's pretty
unusual, and we've been very thankful.  His getting a fever on Thanksgiving
eve was not a good thing.  Both Peter and I were a mess thinking about
spending the night at Philadelphia Children's Hospital.  Something inside me
was telling me that he just had a bug and needed simply to sleep, but my
fear was real too.  Our oncologist, a woman I love even more now than I did
before, agreed that it sounded as though he had a bug rather than an
infection.  She suggested that we wait an hour or so before heading to the
hospital to see if he got worse.  He didn't.  He slept solidly for three
hours, woke up in a pool of sweat, jumped out of bed, ran downstairs and
never looked back.  It was as close to witnessing a miracle as I have ever
been.  Truly.  The kid was a wreck and then he wasn't.  Children are
remarkable that way.  The cool thing was that throughout his fever, I had
this strong sense that something good was happening.  I didn't want to give
him tylenol.  I felt he needed to sweat and get whatever it was he wanted
out of him out of him.  I was right and he was all better.  Incredible.
That night he slept through the night for the second time in his life so on
Thanksgiving day, I felt thankful for a good night's sleep and the passing
of a nasty bug.  Hallelujah!

(Peter did spend Thanksgiving day in bed with a fever.  He's all better now
too).

My friend Diana called early this morning to find out what was happening
with Forrest's surgery.  She could not wait any longer to find out.  I
realized as I was speaking with her that many of you are probably waiting
just as I am.  But surgeons and radiologists take Thanksgiving holidays too,
thankfully, so we are waiting.  Our surgeon at Sloan-Kettering read
Forrest's CT scan on Monday afternoon.  Presumably we will speak with him
some time today.  Needless to say, Forrest's innards may well have changed
since his scan 13 days ago, so if surgery happens next week (?), he will
probably be scanned again in New York so that the surgeon knows exactly what
he is dealing with when he operates.  The waiting is maddening, but over the
course of this year I have learned that everything happens in its own time
and for good reason.  I do what I can and have to do, but I try very hard
not to force things.  When I force things to move faster because of my fear,
they almost always backfire on me.The surgeon's secretary told me to call
again today if I had not heard from him by this morning.  Thinking about the
call makes me feel ill, but I will make the call and I will hear what I have
to hear.  For those of you addicted to Forrest's AFP - that number which
drives a mommy and a daddy bonkers - Forrest's is/was 3500 as of the day of
his scan 13 days ago.  I've decided not to care about that number anymore.
It makes me crazy and all it tells me is that his tumor is growing.  All I
have to do is look at Forrest to see that he is strong and full of life.
Sometimes I think that the madness of knowing that number - and the fretting
and celebration associated with it - is very much feeding the cancer itself.
It's like attending a football game or something.  All I can say is that I
was glad it was 3500.  I thought it would be 10000 by now.

That reminds me, I asked Forrest if he wanted to get rid of his cancer the
other day.  You know what he said?  "No."  Yowsa!What am I supposed to do
with that?  The kid likes his cancer!  And why wouldn't he?  It's part of
his life.  It's a HUGE part of his life.  He knows it well.  It's been good
to him in many ways.  It has surrounded him with love indirectly.  It has
put him at the center of things.  It allowed him to meet Steve.  It's made
him famous sort of.........But if he doesn't want to get rid of his cancer,
how am I going to save his life?  That's the obvious question.  So......Owl
asked him (while we were doing one of our daily visualizations) if he wanted
to get rid of the polka dots on his lung, and to that he very
enthusiastically said, "Yes!"  Ah-ha!  Another lesson learned!  We don't
need to take away the cancer(aka:  love, Steve, fame and all of that) we
just need to get rid of the polka dots.  There's a big difference in those
two things.  Forrest doesn't want to lose all the good stuff (which, by the
way, any normal kid should know and expect and experience), he just wants to
get rid of the polka dots.So, we scrub away, Owl and I, reducing those
purple polka dots to a teeny-tiny size - small enough for Owl to pull out
and send off to the moon, thank you very much.

I'll drop you a quick line as soon as I've had the courage to call the
surgeon so that you know what's up.  In the meantime, I hope that all is
well with each of you.  Much

love,
Bar

news
Friday, November 30, 2001 -- 00:23am
Posted by Bar


Hi Everybody,

The news is both good and bad.  Forrest will not be having surgery next
week, Yay!, but he won't be having surgery because there are more than two
lesions on his lungs.  There is cancer on both of his lungs and too much of
it to do anything about surgically.

I know that this is a shock.  It is to me.  Seems everytime I get news it's
not what I expected.  Strange.  This time I recovered quickly - like in
about 15 minutes.  I am SO glad not to be doing another surgery even though
I had hopes of it helping in the long run.  Truth is, though, that nothing
has changed except for what we know about what is going on with his body.
We still don't know when or if he will die.  We are still not in control.
Forrest is still alive and well and full of energy and health.  We still
don't know what the bigger picture is, and evryday I feel more and more in
awe and more and more humbled by that bigger picture.  Today and tonight,
when I think about the more probable idea of Forrest's death, I find myself
going to a quiet, meditative, prayerful place rather than a frantic,
terrified place.  I know now that God and Nature are in complete control.  I
have no choice but to rely on the rightness of it all.  If Forrest lives, it
will make total sense to me; if he dies, my heart will break and I will
grieve to the depths of my soul, but I will also know that he has lived
beyond my imagination already.  I will know that his life was meaningful and
purposeful and beautiful and that I was and am very, very proud of him.  At
the risk of sounding naive and in denial I must add that I still feel that
he can live.  No one with hepatoblastoma who has gotten to this place has
survived as far as we know, but even that statistic makes me want to defy
it.  We just don't know.  No one ever does.

We're going out to get a new stroller tonight.  I crushed the last one when
I was driving Peter's big truck and thought I had plenty of clearance.  For
me, making it through the winter with lung cancer means many a walk outside
in the woods.  Forrest prefers playgrounds for using his own feet; he
prefers me pushing him for walks along the road and in the woods.  So, a new
running stroller to make it on a wooded path is what we're after.

Lots of love and well wishes to you all.
Bar