After the Doctors
Sunday, April 1, 2001 -- 7:45pm
Posted by Bar


We got home Wednesday afternoon and were filled with relief to be back
here.  We have three weeks until whatever happens next, and it seems
like an extended vacation after what we've been through in the last
month.

As Forrest stood in the hospital playroom on Wednesday and his nurse
un-hooked him from his last drop of chemo, he scrunched-up his smiling
face and asked, "crash cars?"  It's become a tradition for us that
after every round of chemo, we go to Ronald McDonald's House and play
their only video game until Peter and I can't stand it anymore.  It's
one of those race car,
drive-as-fast-as-you-can-without-hitting-something video games.
Forrest has no idea how to drive, of course, but he always manages to
pick the expert course and proceeds to go from side to side of the
virtual track, crashing his virtual Ferrari into whatever stands in
his way.  He thinks it's a hoot.  Meanwhile, with him on my lap, I
feel sick to my stomach from the virtual mo tion.  What a mommy won't
do for love!

When we got home Wednesday, we slept long and hard as we always do
when we get home from the hospital.  Then the first full day home,
Forrest feels pretty lousy.  This round seemed harder on him which
makes sense given the amount of chemo in his little system.  His
anti-nausea drugs did not seem to have any effect and he looked
miserable for most of the day.  He would have nothing to do with
Peter, which was a heart-breaker.  And like any parent when their
child is sick, I worried that he might never be well again.  But sure
enough, Friday morning he woke up as though nothing strange was
happening in his life.  He was as cheerful and carefree as ever.  The
transition is incredible to witness.  Before long he was jumping on
the bed - tentatively, but decisively.  Remarkable.  One of the
potential side-effects of cisplatin, the main chemo drug Forrest is
using, is loss of hearing.  The idea freaks me out, naturally, since
music and listening and singing are such big parts of my life.  I hear
his voice in the morning and I want to memorize it in case he looses
his hearing and subsequently his ability to speak fluidly.  My
worries dissipated when, later on Friday as were lying down to take a
nap, he heard Peter stop at our mailbox 1000 feet away down
themountain from our house.  He turned to me and said, "Daddy's
home!".  I heard Peter too, but it was pretty distant and I couldn't
believe he could hear something so faint.  Thank God for that!

And his eyes too!  He woke-up Saturday morning, turned over and said,
"hawk!".  Sure enough, perched on one of the white pines at the end of
our property was one of the red-tail hawks that has begun to build a
nest in our woods.  I don't think chemo can hurt his eyes, but I don't
know, and he rubs them a lot, so I worry:  Is it cancer?  chemo?
allergies?  headaches?  teething, of all things?  Teething used to be
our biggest worry!!  Those were the days!

My parents came up for the night Friday and that made Forrest's day.
When I took Forrest to bed afer dinner, we lay there and talked for a
while.  Apparently he and Peter had talked earlier in the day about a
future time when Forrest would no longer need his catheter.  Now, this
may sound funny, but a catheter becomes part of your body and it's
very nostalgic.  It's hard to imagine life without it - especially for
Forrest who has had one for a quarter of his life.  Clearly, though,
the future was on his mind.  While we lay there talking, we spoke
about the many things that help take away his cancer:  Essiac, the
muggle buggler (which I'll explain later), Lavendar, Frankincense,
Ledum, Clove essential oils, Owl, Angel (who's playing a lot of
frisbee these days outside our window), chemo, God and the doctors.
When I mentioned the doctors he asked, "what's after the doctors?"  I
pretended not to understand his question.  I was not prepared for his
ability to form that thought, and I didn't know about his earlier
conversation with Peter.  I told him I didn't understand, and asked
him to repeat his question.  He did, and asked again, "what's after
the doctors?"  YOW!  I didn't know what to say.  I was caught off
guard and I did not know the answer.  Again, I lied (sort of) and said
I did not understand the question.  When he'd fallen asleep, I
rejoined my parents and Peter and told them about Forrest's question.
Peter told us about his earlier conversation with Forrest, and the
three of them said, "after the doctors, he will be well!!"  But I was
still upset by the question.

When I finally went to bed a bit later, I thought about it some more,
and realized that the reason I could not answer Forrest's question
about 'after the doctors', was be cause of my fear.  After all my
e-mails and after all that I have said and done, it became obvious to
me that on a very deep level I still thought that his death was
inevitable; that any hope that I had was foolish.  It never occurred
to me that 'after the doctors' he would be well.  All I could think of
was my worst fear, and I could not answer him.  It was a stunning
realization for me, and gives me much to work on.  Once again, Forrest
is my teacher.

Lance Armstrong writes about this issue in his book. He talks about
life after physical recovery from cancer and h ow spirital and
emotional recovery takes much longer.  He describes how difficult it
is to know what to do after chemo, after radiation, after the doctors
say "You're cured", or "I can't do anything more for you."  He talks
about how impossible it is to return to normal.  I cannot imagine it.
I mean, what will I do with my life?  It will not return to what was
normal.  It is forever changed and I have no idea what the future will
look like for me.  I wonder, after nearly nine months of e-mails to
you all, how will they finally end?  what will they end with?  what
will I do next??  In an odd sort of way, I don't want them to end
because of the uncertainty of the future. Time, as usual, will
tell.....Finally, I wanted to tell you that I sang againlast night in
a loc al show, and it was wonderful for me.  I feel free to sing with
no expectations these days and it feels much better to me.  Some day I
hope to sing again more regularly.

Take good care of yourselves,
Bar

PS A "muggle buggler", one of Forrest's cancer removers, is our name
for a Rife Machine.  Rife was an engineer who lived in the early 20th
century.  He believed that cancer and other diseases could be cured or
reversed by imposing certain frequencies on the diseased cells.  The
muggle buggler creates those frequencies and at the same time exudes a
wonderful indigo blue/purple color.  We love it.  It's exotic and for
all we know, it's the answer.  If nothing else, it's beautiful to look
at, and, Forrest believes that it takes away his cancer.....
xoxoxoxoxoxoxoxoxoxoxoxoox

Spring At Last
Monday, April 9, 2001 -- 8:38pm
Posted by Bar


What a day!!  Finally the weather has changed to the spring that Ineed
so badly.  Everyone around these parts seems to need it.  Tempers are
flaring and everyone looks tired and drawn.  Today was spectacular.
The spring peepers finally started singing last night and the sun
streamed into my room this morning to wake me up.  I feel as though I
can breathe again and there's all kinds of hope in the air.  I
actually went out with a tank top today and felt completely
comfortable.  What a blessed relief.

I have been thinking about writing all week but have had no strength
to do so.  Last week was Forrest's worst in a while.  The chemo caught
up with him at night and he was very uncomfortable and restless.  He
won't tell us specifically what is bothering him, and if we say "does
your tummy feel sick?"  he'll say "no" or "yes" and we're never sure
which is the true answer.  I've pretty much concluded that he cannot
really describe what's wrong but that things just aren't exactly how
he would like them to be.  I haven't learned from other chemo patients
who are older what it feels like to get these drugs.I have tried to
convince myself that everyone experiences them differently and so
hearing their horror stories would do me no good.  Truth is, I am not
sure I want to know.  I take each night as it comes and get through it
as best I can.  Unfortunately, the weeks that are long tend to get
harder as the week progresses because my patience thins as I get less
and less sleep.  That's what happened last week.By Thursday night -
after a week of, at best, 2 hour sleeps without interuption, I was
pretty testy.  It's understandable, but I still feel pretty lousy
about it in the morning.  I'll ask Forrest what's bothering him in the
middle of the night and get angry that he can't tell me.  Early in the
week I don't even ask; I just hold him and rock him until he falls
back to sleep - even if I have to do that 12 times a night.  I'm sure
it's very confusing for him.  Like so many moms, I get mad at myself
for not being supermom/superwoman.  I wonder why I can't do more for
him.

Last night we finally got over the hump and Forrest slept restfully.
He still woke up a lot, but he could easily get back to sleep and he
seemed comfortable most of the night.  I, of course, felt like I'd
drunk a mocha java before going to bed, so as he slumbered blissfully,
I tossed and turned!  Maddening.  None of this really matters except
that I feel like I'm 97 and my eyes are drooping.  My skin feels like
it's going to fall off, and the dreaded
old-lady-flabby-under-the-arm-shakes-when-I-lift-my-arms effect is
beginning to set-in!  EEKS!  What's a girl to do????

Enough of that!!!!

Forrest, despite my pitiful aging body, is doing wonderfully.  He's
getting a nice head of hair (my color - dark brown - not Peter's -
bright red.)  He's got eyebrows and long eye lashes and his skin color
is good.  He's walking with more strength.  His goofy sense of humor
is returning in full force.  His sweetness is even more endearing.
He's doing 63 piece puzzles by himself.  (Yes, I know, I gush once
again.  The kids got a knack for puzzles.  What can I say?)  He and
Peter went on a couple of 4-wheel rides today.  Once to inspect a
beaver dam down the road a piece.  Once just for the heck of it.  We
went to the hospital this morning for routine bloodwork, and as
expected his immune system is very depressed and he may need a blood
transfusion later this week.  But you would not know these things by
looking at him.  At this moment, he and Peter's sister Mary, are
upstairs playing "tent" - an endless game.  Anyone lucky enough to
experience "tent" with Forrest will delight in the best of imaginary
biscuits and chamomile tea.  Really tasty.

It looks as though we will go back to SLoan-Kettering for lung
surgeries fairly soon.  The doctors want to get right on those little
lesions and get them outta there.  He will have two surgeries -one on
each lung.  They go in at precisely the location of the lesions and
remove them as opposed to opening his chest.  What a relief!  It will
be major and it will be painful for Forrest, apparently, but it will
not be life threatening.  The surgeries will be a week apart and the
first will be in the next couple of weeks.  I'll let you know as soon
as we have the dates.  We will probably know by Wednesday.

Many of you have written to suggest that we synchronize our
meditations and prayers, and I like the idea very much.  I feel
tremendous strength and support by the idea that others are there with
us.  I also like the idea that as we all think about Forrest's
healing, we also look at ourselves and focus on our own healing at the
same time.  I have learned that this is very important for me even as
I watch Forrest go through the more obvious healing he must go
through.  With all of that in mind, please know that I will be
attending a laying on of hands healing service with Forrest and with
Peter every Wednesday night at 7pm for the forseeable future.  Please
join us in whatever way feels good for you from wherever you are.  We
feel it all and are still grateful for your tenacity and your
willingness to be on this journey with us.

It IS spring at last and I am filled with a love for this life.
Forrest joined me in our hammock today and we just lay there together
very quietly for about 10 minutes.  What a joy!  Nothing better for
me.  He just lay on my tummy and we both took-in the sun.  We both
needed it and the only thing I said to him was, "it doesn't get any
better than this, Forrest".  A beer commercial, I know, but so true!

I hope that you are enjoying your spring wherever you are.  Much love
from all of us, Bar, Peter and Forrest

Easter
Sunday, April 15, 2001 -- 6:56pm
Posted by Bar


I haven't been able to get to my computer this week.  There is so much
going on in my head, that even when I sat and tried to compose an
e-mail to you on paper, I could not get my thoughts in order.  I am
tired and, in many ways, I am done with this whole cancer thing.  I
want it to be over.  I want to stop thinking about life and death and
pain and 'staying-in-the-moment' every second of every day of my life.
I'm just tired.  I want Forest to be alive and well - and in my really
tired, worst, weak moments, I want resolution even if death is his
immediate destiny.  Waiting and worrying and trying to be
light-hearted and deep and faithful all of the time has worn me out.
I want to be a couch potatoe just for an afternoon.  I want to get
back in shape.  I want to think about a summer vacation we know we'll
have.  Mostly, I want Forrest to be well and going off to pre-school
with his buddies.  The patience that I try to instill in Forrest when
he wants something "NOW!", is the same patience I need to learn.  I
keep reminding myself that all of this will pass, but even the
reminder is tiring!

I sound like a broken record......

We've had a few adventures that are worth telling you about.  First,
today is Easter and our friend Michelle came up over night.She is
Forrest's girlfriend.  He LOVES her.  They play together and giggle in
a way that only the two of them do.  It's a great joy for all of us.
Michelle is also an excellent massage therapist and knows a lot about
physical therapy and yoga.  She spent a fair amount of her time here
showing us stretches that we could do that would relieve our ailing,
failing bodies.  She agreed with our healer, John, that Forrest has
weakness in his right hip and leg which explains his still un-smooth
ambulation.  (I like that word!).  Michelle created some games that
will help us help Forrest re-gain his leg strength and straighten out
his hip a little.  It's not a big concern.  I could care less if he
walks well at the moment, but he might care a whole lot in a few
years.  It's good to be addressing it now.

Easter had deeper meaning for me this year.  I guess you could say
that I'm beginning to understand the story of suffering and
transcendence that Easter tells.  I don't know if I understand the
Easter story literally or as the Bible might have me understand it,
but I think the mythology and the evolution of the Christian
Crusifixion and Resurrection story is powerful stuff.  Tom Miller, our
minister, described the Easter message as a person's decision to chose
life over death, or, the light over the darkness, in his sermon this
morning.  We have had to make those choices in a very real way this
year, so the whole day was very powerful for me.

Easter has always been a much-anticipated day for me - even as a kid
anxiously awaiting the Easter Bunny.  In later years, it was the
arrival of spring that I craved and Easter was so often a spectacular
day.  (It's also been a great opportunity for those new shoes that I
"needed", too!)  This year, I needed the sun, the warmth and the hope
more than anything.  We went to church this morning and after
communion, I just cried.  Don't know why.  Something about the
humility and the community does it to me every time.  I go to church
with a degree of desperation these days.  Hoping that my good
intention and earnest-ness will somehow improve Forrest's odds.  At
the same time, I am finding a real home at my church.  Tom, the
minister, and now my good friend, knows my motives well.  He and I
spend a lot of time talking about our seperate but similar searches.
I am grateful for his confidence and for his questions, and most
importantly for his willingness to listen and to acknowledge my
doubts.  As for my earnest-ness (or lack of it), I think that my
intention is earnest despite my reservations and questions.  Finding a
place to do spiritual work is an earnest quest regardless of where
it's done and what the questions are.  I don't think God cares or is
accounting for my Church attendance or my earnest-ness.  All that
matters is my journey and the integrity with which I travel.......or
at least I think so.......

So many odd things happen in our lives these days.  I wonder if they
are signs or omens, and then I wonder if I'm nuts or something!  Like:
Peter, his sister Mary, Forrest and I went to the local playground on
Tuesday, which is next to the local graveyard.  After swinging and
sliding and jungle-jimming for an hour or so, we ventured over to the
graveyard to look at stones - a favorite pasttime of Peter's and
Mary's.  Woodstock's is a beautiful, rural graveyard with a natural
rise in the middle where the four of us sat and rested after checking
outevery American flag on every military man's grave site that Forrest
could see on his way up the hill.  PHEW!  It was a lovely sunny day
and warm when we sat on the stones there at the top.  As we got up to
leave, Forrest said, "I like it here."  Well, what was I supposed to
say?  feel?  think?  Was his question an omen??  A sign??  Oddly
enough, knowing that he liked it there makes the thought of burial
more bearable.  At least I would know that he liked the spot!  Tom, my
minister friend, was enlightened enough to respond to that comment by
saying that another way to look at it was that Forrest now knows where
he would like to bury US when the time comes.  Thank you, Tom, I like
that thought a whole lot more!

Another weird thing happened when I was creating a napping/camping
spot for Forrest in the alcove next to our bookshelves the other day.
As Forrest lay down to sleep, I knocked some books over, and my
maybe-opened-once-in-thirty-years Prayer Book fell out opened to the
"Burial of a Child" page.  Great.  Thanks.  I needed that!  Well, in
fact, once I had the courage to read them, the prayers on that page
were very comforting - albeit rather emotional.  What I want to know
is why did that happen?  Why did that book open and on that page?  I
don't know.  Is comfort what I needed?  I guess so.

I hope that I don't sound hopeless.  I am not.  In fact, I feel more
full of hope and faith than I have since this journey of ours began.
In a way, I guess you could say that I have gotten used to the thought
of whatever might come our way.  I have learned to tolerate the edge
because that's what we have been practicing for the last 9 months.

I admit that I am scared of the upcoming surgeries.  They will be
painful for Forrest and I dread the thought of him being in pain and
not being able to help.  The worst thing is witnessing his growing
realization that Mommy and Daddy cannot protect him.  It is awful to
see him learning that at such a young age and under such traumatic
conditions.  And once again, I see that all I can do is love him and
stay in contact with him especially when he is in pain.  But I still
feel helpless.


A few last things:  Please be sure that Forrest is doing great.  His
spirits are high and the spring is doing wonders for him.  He loved
dying Easter eggs and doing the egg hunt this morning.  I hope to tell
you a date for his first lung surgery soon.  I wish I knew myself.
(Patience, Bar, patience).  Tomorrow, Forrest's teacher's husband,
Dave Chandler, is running the Boston Marathon "for" Forrest.....which
is to say, he, Dave, feels so inspired by Forrest's struggle that he
will struggle himself for 3 and a half hours tomorrow.  This kind of
contagious inspiration has made life very rich for us this last year.
There is so much generosity and love coming our way.  It is a most
humbling position to be in and we are honored and awed by it.  Thank
you, Dave.  Good luck.  Don't break a leg!!

Happy Spring, everybody.  I hope it's been a rich and joyful holiday
season for all of you,Bar

Tuesday
Wednesday, April 18, 2001 -- 8:45pm
Posted by Bar


Hi everybody,

Just wanted to let you know that Forrest's first lung surgery has been
scheduled for this coming Tuesday morning.  He had a cat scan
yesterday and another AFP (which is the tumor marker they draw from
his blood.)  Everything is stable - not better, but not worse.  It
suggests that his chemo therapy has lost its effectiveness, so the
doctors will be strategizing again about what to do after the
surgeries.  It's all good and bad.  We are so much further along and
yet so far from done with this cancer.  Forrest needs an explanation
soon.  He's older now, and knows what the word 'surgery' means this
time around.  Peter and I are trying to decide how best to talk to him
about it all without instilling fear.  This morning when I was putting
his essential oils on, I told him that we were going to be focusing on
cleaning his lungs now that his liver was all clean.  He said,
"Oh, Owl will do that!"  AMAZING!  The visualizations with Owl are
actually working!  He really believes that Owl, with his powerful
wings and his night vision, will clean his lungs.  Forrest said what
he said with such conviction that I began to wonder whether chemo and
surgery were even necessary.......still wondering about that........

I spoke to a wonderful homeopath last night and have added a few
homeopathic remedies to Forrest's regimen.  Everyone in the so-called
alternative health world is very enthusiastic about the possibilities
of homeopathy particulary with children.  I was having trouble finding
a homeopath that had real experience with pediatrics.  I feel very
good about what this woman recommended.  She has dealt with breast
cancer herself- exclusively with homeopathic remedies- and was very
knowledgeable about not only cancer, but pediatrics.  Mostly, we'll be
focusing on alleviating discomfort and side effects from the surgery
and from chemo.

All of our efforts add up to keeping me and Peter and Forrest very
involved in the healing process.  Seems to me that holding the power
is ultimately the most important thing we have.

Forrest continues to do beautifully.  He's full of energy and will
probably make a whole day of school tomorrow.  His bloodwork is good
and his legs are stronger and he's all around more like himself.

I'll be in touch from New York City.  We'll be staying at the Ronald
McDonald House again, but we're not sure how long we'll be there.

Many thanks to all of you.  I'll be thinking about you.....

Bar

Tomorrow's Surgery
Monday, April 23, 2001 -- 6:30pm
Posted by Bar


It's Monday dinnertime and Forrest and Peter are currently playing
video games (aka:  "crash cars") here at Ronald McDonald House in NYC.
Forrest is in little boy heaven smashing up virtual car after virtual
car.  He is in great spirits today after a wonderful weekend with some
of Peter's family outside of Philadelphia.  One of Peter's neices has
a daughter Forrest's age and they played together a whole lot.  It was
nice to see.  Isabelle is more worldly and courageous than Forrest.
She led him around and showed him all sorts of things he'd never seen
before (including her pet turkey who she very boldly walks right up to
like it's the most natural thing in the world - which it is.)  Her
parents are farmers and she is completely comfortable around animals.
Forrest also had tons of fun because there was a BMW motorcycle and a
cherry picker and a tractor all of which he had rides on.  Now THAT is
little boy heaven!

So, tomorrow is the first of his lung surgeries; the second will be
next Tuesday morning.  They will start with his right lung and may
decide to remove a whole lobe where so many of the lesions are, rather
than take them out one by one.  They'll make that decision when they
get in there.  The incision will go down his back and around his
collar bone.  Sounds as though they spread his ribs to get in there.
I don't like to think about the details too much.  I am just soooooo
thankful there is morphine on this planet.  He will have an epidural
this time around so that pain meds can be delivered quickly.  This
surgery is painful.  Lots of muscles are cut and, well, you get the
picture.  This surgery's also much less traumatic than the liver
surgery - no ventilator when he comes out of the OR, and no other
tubes coming from his face, and no intensive care.  YAY!  There will
be a chest tube that will drain fluids from around his lungs.  That
tube is apparently very uncomfortable, too.  He'll also be
catheterized until the epidural comes out.They expect us to get out of
the hospital by Friday.  We'll stay here at Ronald McDonald's house
for the weekend and then do it all again next week.  I can't go that
far yet.  One day at a time.

Before I sign off I want to say that going to Sloan-Kettering's
Pediatric Clinic today was really hard.  It's not a place that I want
any of you to ever see.  It's a big place.  Lots of little people
running around with no hair, crutches, varying degrees of yellow skin,
varying degrees of happiness and of worry and of terror.  As I looked
around there this morning, I could not fathom the amount of strength
and hardship that was being felt by all of the families in that room.
It's not a sad place.  Usually I feel very inspired by the
will-to-live in the room.  But this morning it overwhelmed me.  I
wondered why any of us were trying.  I was reminded of descriptions of
leper dens in my childhood that scared me then and still scare me now.
Everyone is sooooo sick, and each family is hoping, hoping, hoping
that their son or daughter will be one of the lucky ones.  We ran into
a family we'd met in Albany who's been here in NYC too on and off for
six months.  Their daughter, Mariya, who's about 5, has not one but
two forms of leukemia.  She runs around with a mask and gloves on when
she gets her marrow transplants.  They have struggled enormously.
When I saw her mother, I knew that they had had bad news this morning.
The mom was white and dazed and looked like she could easily get sick.
Sure enough, Mariya has relapsed after all of this time.  I don't know
what to say.  I was terrified to see her.  Any one of us in the clinic
could be in her position on any day.  I don't know what more to write.
I just wish that somehow cancer would go away.  I wish that life could
be easier sometimes.

Finally, I want to mention that while we were away this weekend, Peter
and his family and Forrest and I took an hour or so to sit and talk
about Forrest's healing.  It was a beautiful day, and Peter's sister
Gray and her husband, Dale, have a lovely pine sort of garden at the
top of their farmland backyard.  We gathered there to express
ourselves and to share our energy for Forrest's continued healing.  It
was a remarkable coming-together - the sort of communicating that we
humans rarely take the time to do.  I am grateful for their support
and their honesty.  We talked not only about Forrest's physical
healing, but the often more difficult healing that we are required to
do that is emotional and spiritual.  I am having trouble saying that
what we talked mostly about was the sort of healing that Peter and I
need to do between ourselves.  Everyone there was married - some for
thirty years, some for two.  We spoke honestly about sticking it out
when marriage is very hard.  I was very moved by the entire event and
thankful to be part of such a supportive family.

I feel tongue-tied.  How do I describe such a vulnerable and moving
interaction..........I just felt like I wanted to try.....

Thank you for being out there, everybody.  I'll let you know how
things go as soon as I can.

Much love,
Bar

OUCH!
Wednesday, April 25, 2001 -- 11:06am
Posted by Bar


Good morning,

Forrest is doing very well this morning.  Surgery yesterday was
considerably lengthier than we'd anticipated, but ultimately it was
successful.  Dr.  LaQuaglia, the surgeon, tried to remove just the
lesions from Forrest's right lung, but decided in the end to take out
the lobe instead.  So, Forrest is lobe-less.  This is fine.  He'll
just have less lung capacity - the lung does not regenerate.

The operation also took longer because his main catheter sprang a
leak, so they put a new one in.  He now has a very durable, red, white
and blue catheter.  It's in the same location as his old one but looks
like it will endure wear and tear a bit better than the last one.  As
I've mentioned before, there's a certain amount of bonding that goes
on with one's catheter.  Peter and I felt kind of nostalgic about
losing the original one.  The nurses in the recovery room thought
Peter was nuts to actually want to retrieve it from the Operating
Room.  Turns out that other parents have asked for the same thing!

So, after a good night of sleep, thanks to narcotics, Forrest is
eating well this morning.  He's very uncomfortable, but in another day
or so, they say he'll feel much better.  They're pulling out his foley
catheter now....back to diapers, YAY!.....and one of the two chest
tubes will be yanked today also.  The chest tubes are what cause his
considerable discomfort/pain.  They drain the fluid that build up
around the lungs as a result of the surgery.  When they take the
second one out tomorrow, we'll move to a regular room and then be
outta here by the weekend.  Rumor has it that Blue's Clues is in town
and we may even try to get out to see it.  "We'll see", is what my dad
always said.  Now it's my turn.

Everyone has been great to us these two days.  Nice to see familiar
faces.  Forrest has made lots of friends here just by being Forrest.
It's a nice feeling.

We are holding up well.  Yesterday was long and stressful just
waiting, but seeing Forrest in the recovery room and seeing how well
he looked made it all manageable.

I hope that you are all well.  It was beautiful here in New York City
yesterday.  I hope it was where you are.

Much love,
bar

All's Well
Thursday, April 26, 2001 -- 2:29pm
Posted by Bar


Hi everybody,

We got bumped from our lovely, private, room-with-a-view-of-
New-York-City, at about 8pm last night.  Just when I thought I had it made
and that I might actually get some sleep,it figures that something would
happen to change all that.  As it turns out, moving from the room we were
in -an observation room for more serious patients - into the new rooom on
the regular floor - also with a view, but with a cranky roommate and lots
of light - was a good thing.  Forrest is doing so well today that they may
even get us outta here tonight.  If we'd stayed in the observation room
last night, they would have insisted on at least one night on the regular
floor to make sure he could make it through the night without oxygen and
constant electronic monitoring.  If his chest x-ray from this morning
comes back clear, they'll boot us.  WHOA!  I'm ready!!  This stage of his
treatment has actually been very manageable.  It's brief enough that I can
handle the lack of sleep.  And the narcotics are effective enough that
Forrest has been pretty comfortable.

We stopped all pain meds this morning and he seems ok.  He just fell
asleep, and they're going to transfuse some blood to bring his counts up,
but otherwise, all is well.  Apparently he did not bleed that much during
surgery.  I don't understand that phenomenon, and it's a question that I
am squeamish about asking.  I don't exactly want to know how they keep a
person's body from bleeding non-stop when a big cut has been inflicted
upon them.  Maybe someday I'll ask.  (By the way, I made a mistake in my
e-mail the other day about where Forrest's incision would be for this
surgery.  I said something like 'down his back and around his collar
bone'.  In fact, it's his shoulder blade that they went around.  It's like
a crescent curve back there.  I just had my skeletal vocabulary jumbled up
in my mind.  Hope you weren't trying to imagine such an incision.  Talk
about OUCH!

We spent the night with a scared and very whiney, cranky, spoiled rotten
little 4 year old last night.  Understandable.  His parents were
experiencing their first night of this nightmare called cancer.  Their
distress and confusion and shock reminded me of our first days
way-back-when - 10 months ago already.  They do not have a true diagnosis
yet, but they start chemo tomorrow anyway.  The dad is too calm - clearly
in denial.  The mom is shaky, terrified and so upset that she and her son
were actually fighting with one another about things like who really
knocked over the urinal and soaked the bed.  She, of course, took all the
blame.  I would say, 'who cares?'  Change the bed, give the little boy a
kiss, hold him and tell him how much you love him.  Poor woman doesn't
have the courage to do that right now because she's so distraught.  Very
sad to witness.  I felt like I wanted to coach her on how to withstand
this craziness, but alas, I cannot.  I did tell her that chemo isn't
necessarily as bad as they say it will be.  She did not believe me.  I am
afraid they are in for difficult times.

I thought of a short book idea last night:  how would it be to write a
sort of light, kind of humorous little text on how to do hospitals?  You
know, things like how to assume control when it comes to getting the
number of blankets you need, or when it's appropriate to say, 'ya know, I
don't want you to do that to my son' or 'could we wait to weigh him, it's
2am and I don't think his weight will change by tomorrow morning!'  It's
an idea.  I'm thinkin' that between me and my sister-in-law - she and her
daughter are true veterans of hospital life after 42 surgeries in 21 years
- we have the experience to tell people what nurses forget to mention.
Whaddya think??  You wouldn't need it unless you were in the hospital, but
maybe if you did have to go to the hospital it would help......

When I walked back to Ronald McDonald's this morning to get a shower, I
felt very strong.  It's a beautiful, blustery spring day, and New Yorkers
all around me seemed very intent on whatever business was at hand.  I felt
light-hearted.  I wanted to shout out to everyone how great life is; "My
baby is alive and he is doing well!  It's the kind of thing that could get
me in trouble in a city like this one, so I kept it inside, but it felt
great.  I wanted to tell everybody so they could see how great their own
life is.  Corny I know!  Maybe my hay fever is makin' me nuts!!

Anyway, I hope that your life is good too!
And thank you again for all of your messages! We continue
to be overwhelmed and grateful.

Much love,
Bar

PS Did one of you send us a very sweet pillow and blanket
for Forrest??  It mysteriously showed up at our door at Ronald's and there
was no note to say who sent it.  Let me know.  And if it's anonymous,
THANK YOU!  It's very cute.  Forrest will love it!

PS#2 They have scheduled Forrest's second lung surgery for This coming
Tuesday.  I'll be glad when it's all over.

Adios, b

Saturday in the Park
Sunday, April 29, 2001 -- 8:57pm
Posted by Bar


What a weekend!  This has been the sort of weekend a person loves in New
York City.  It just doesn't get any better.  the trees are blooming.
Everyone is in Central park with as little clothing on as possible, and it's
just alive around here.  we spent saturday and sunday exploring the park.  I
enjoyed retracing my steps from my days living in midtown.  We went to the
carousel this morning which Forrest LOVED.  and believe it or not, we ran
into one of his nurses from New York Presbyterian there.  she took care of
forrest for many of the days that he was in intensive care over there.  It
was wonderful to see her expression when she saw that it was him!  Last time
she saw him, he was still very puffy from the liver surgery, and still very
much in shock from the trauma of it.  today, despite his lung surgery on
tuesday, he was more like the forrest that we know.  I loved showing him
off!!!  Her daughter loved the carousel too.  It's a magical spot.

Yesterday, we went to the zoo and then to FAO Schwartz.  It was crammed, but
still a blast.  forrest was thrilled just as any kid would be.  He liked the
escalator the best, so he and Peter went up and down many times.  On the
final trip, a very well dressed man we'd seen in our travels, approached us
and gave us his card.  Turns out he founded a research group out in
california that studies childhood diseases and under-researced, rare
childhood illnesses.  I guess he eye-balled us because of Forrest's
hair-less head.  It was kind of a shock.  We'd all but forgotten about
cancer and he reminded us.  It's strange.  Once you live with cancer for a
while, especially when you're living with childhood cancer, you DO forget
because in many ways in doesn't change your life.  Kids still want to go to
FAO Schwartz, they still want to eat ice cream (hopefully), and you still
love them and have fun with them as if all of their hair is there.  I'll
call the dashing man this week some time.  Who knows?  Maybe he has the
answer we need????!!!

So, we are fine.  We ended up getting out of the hospital on Thursday night
which ended up being premature.  Peter and I spent a fit-full night trying
to decide whether to go back to the hospital or not.  Seems Forrest's pain
meds were not working well enough and he was hurting badly enough that he
would not take deep breaths.  It was scary.  In the end, we stayed put
because the idea of dressing him, catching a cab, going to the ER, going
through re-admission and all that that entails was more stressful than
listening to him struggle for air.  Around 4am, the meds kicked in and he
slept (and we slept) for 4 hours before going back to the hospital to be
checked anyway.  Friday, he had a bit of a fever, so we got some antibiotics
for that.  We also got an x-ray of his lungs which look fine but still not
full.  Presumably by tomorrow morning's x-ray his lungs will be strong
enough to do the second surgery on Tuesday.  His fever is gone.  He broke a
good, healthy sweat shortly after we got back to Ronald's Friday and he's
seemed fine eversince.

We met another couple who's here with their 18 month old who has an almost
identical cancer scenario as Forrest's.  they are having their liver surgery
on Tuesday.  It's been good to share our experience with them and get some
perspective on our own journey.  It's been really hard, but it's also been
manageable, and, more importantly, it's been worth it.  Since we started
this thing back in July, Forrest has grown up.  We know who he is now,
whereas in July, he was still pretty much a baby.  We realized today that
knowing him as well as we do now makes the possibility of his death more
bearable.  If he had died before we had known him, we would have wondered
about his personality for the rest of our lives.  And what is so wonderful
is how much we like him.  He's a really excellent kid and we are honored and
proud to be his parents.  I know that sometimes kids and their parents don't
get along.  but we do and it's great.  I am very grateful for that.

Before I go join Peter and Forrest, who, as usual, are crashing cars just
outside the computer room here, I wanted to tell you about this flukey thing
that happened:  On Friday, I stopped into the chapel over at Sloan-Kettering
on my way from lunch.  It's a non-denominational space; very quiet and
simple.  There's usually never anyone else in there, so I find it to be very
peaceful.  There's a Koran and a Bible on the altar and evidence of many
different languages being spoken there.  I like that detail.  Anyway, after
I sat for a moment, I thought to myself that I would just go over to the
Bible and open it.  Whatever page opened I would read whatever passage my
eye went to first.  I was thinking of the exercise as a sort of test, or as
a way of checking my horoscope in a way.  I've never gone to the Bible like
that before, so I thought I'd try it.  Strange.  The passage that came up
for me was Matthew 10, the first passage from the BIble or any other book
I've consulted, whose name and number I will never forget even if I can't
quote it.  It basically said something like:  Jesus or God gathered around
his disciples and told them that they could cast out evil and that if they
(or others) believed, could cast out all manner of sickness and disease.
I'm doing a lousy job of describing the words, but what I got from what I
read was that Forrest would be healed.  Was that a fluke?  Was that just
luck?  Or was it an honest-to-God message being given to me??  who knows?  I
only know that I liked what I read!!!!  It was so perfectly what I needed
that why would I not take it to heart.....

Life continues to fill me up.  I understand less and less and am giving up
more and more of my control.  I needed to do just that, control freak that I
am, so in many ways I am happier.

Forrest is back on his feet today.  Starting to make us laugh again and
generally feeling stroger.  I'll be glad when the next week is over.

Hope your weekend has been great.

love to you all,
bar

Butter
Monday, April 30, 2001 -- 7:22pm
Posted by Bar


Just wanted to let you know that Forrest WILL have his left lung cleaned up
tomorrow.  We'll get to the hospital at 6am and surgery will probably begin
around 8am by the time they weigh him (they are ALWAYS weighing him!), his
bloodwork is drawn and pre-op meds are given.  He's doing very well today -
walking more confidentally and making us laugh more and more regularly.
It's a joy.  His operation should be done quickly (by 10am or so).  If you
think to think of him during that time, that would be great.  It's much
easier this time knowing that he will be fine within a few days assuming all
goes well.

Knowing that I risk your thinking that Peter and I are losing our marbles, I
wanted to share a little dark humor with you.  I share this story with you
because I think that in many ways, Peter really defined Forrest for me this
morning:  Forrest Loves butter and cheese (pretty much the hardest things
for his little liver to process, but what are ya gonna do?)  Anyway, he
often makes a point of saying "I like the butter part" when he is eating one
of the many bagels he ingests in any given week.  Similarly, he'll say, "I
like the cheese part" when he's getting his almost-daily ration of macaroni
and cheese (I know, I know, I should deversify his meals.  But give me a
break!  He's only 2 and a half!!)  This morning, while eating his bagel at
the diner down the street, he told us the bit about liking the butter part,
and Peter quickly added, "Forrest, your epitaph could be "I like the butter
part".  Peter's words were a beautiful truism:  Forrest seems always to love
the rich parts of life while at the same time taking in the simple and the
basic stuff too.  Here's hoping that we can tell him this story 20 years
from now and that he will enjoy a full and hearty laugh over it!

Cheers!
Bar