bumped
Tuesday, May 1, 2001 -- 1:27pm
Posted by Bar


hi,

We've been bumped.  which is to say, we are waiting.  Dr. Laquaglia had to do
an emergency surgery this morning just as we were headed into the OR, so
we're back at Ronald's until we get a call.  That'll probably be around 5pm,
so be thinking of us then if you can.....  thank you.....

The bright side?  We just slept for 3 hours, and now, Forrest is playing
crash cars instead of feeling uncomfortable in his hospital bed.  There's
always a reason and a bright side,

more later,
bar

Sleepless in New York City
Wednesday, May 2, 2001 -- 10:17am
Posted by Bar


Good morning,

PHEW!  What a day and night yesterday was.  Forrest finally went to the
Operating Room at 4:30, surgery started at 5, and he got to the Recovery
Room at 7:30 - lots faster than last week.  His surgeon, a gentle but
serious man, looked as though he had just finished a round of golf after his
3-surgery day of saving little people's lives.  Apparently removing tumors
is kind of a zen thing for him.  WOW.

So, the surgery was successful.  Forrest did beautifully and he looks much
better than he did after last week's surgery.  We didn't sleep much last
night because once again, we/they could not get his pain meds right.  He was
very uncomfortable all night, and despite Peter's and my repeated efforts to
get some relief from the doctors on call, there was none.  Dr LaQuaglia was
mad about that this morning.  In this day and age of great pain meds, there
is no reason for little people (or big people!)  to suffer pain after
surgery.  Finally this morning, we got what we were asking for all night and
Forrest is sleeping peacefully.  I am tired, but not able to sleep myself
this morning.  Too much going on.

We spent a lot of time being angry yesterday which is the last emotion we
wanted to feel when so many other emotions were crashing in on us.  We were
mad because the staff here was not communicating with us at all about when
Forrest's surgery would potentially take place.  When they did talk to us,
they would say that the OR nurse would be up to get us "momentarily" and
then we would sit for an hour until we got so crazed that we would bother
somebody again for more accurate information.  I don't like being
manipulated like that.  All I wanted yesterday was for someone to keep us
posted - even if all they could say is, "sorry, we don't know when Dr
LaQuaglia will be ready for you."  As it was we kept getting emotionally
ready to say good-bye to Forrest only to find out we had more waiting to do.
Meanwhile, the poor little fella could not eat or nurse and remarkably
enough he was pleasant and understanding throughout the wait.  Peter and I
were a mess; Forrest was patient and delightful.  Again, the teacher was the
youngest amoung us!  By the time we quite literally handed Forrest over to
the anaesthesiologist, I was such a mess that I cried for a good long time.
Even in a place like this, people don't seem to understand how difficult it
is to go through surgery as a parent.  We felt completely neglected
yesterday.  (I must add, however, that Dr LaQuaglia, the busiest of them
all, was the only one that kept in touch early in the day.  He did
understand and it proves again that he is a fine man and a fine doctor.)

So now surgeries are over and it's back to chemo which everyone seems to
agree we need to start on Monday.  Yes, Monday, Folks.  I'm a mess about
that too.  We will be starting a new therapy and hoping that the new drugs
will give Forrest the last punch he needs to destroy this cancer for good.
As I told you before, the chemo that has been working all along is no longer
effective.  I hate to put it this way, but we are in a race with the clock.
This cancer is so aggressive that we need to move quickly so that all of the
advantages we gained by doing the surgeries are not lost.  It looks as
though we will go home on Friday and then start a week-long protocal of
chemo in Albany on Monday.  I'm tired and scared just thinking about it.
But I believe fervently that my attitude (and Peter's) could make the
difference now.  We need more than ever to believe in life and in the
ability of this chemo to do the trick.

All the while, Forrest looks beautiful as can be.  All the nurses in the
recovery room came by his bed to say hello having met him last week.  He
certainly has a way of winning the affections of the people he comes in
contact with - even when he's on morphine and half awake.

I'm proud of him more than ever today.

Thanks for listening.  I have needed to vent and could do so for another
hour or two, but I should get back to my boys.  Have a wonderful day and
visualize chemo eating away at those little polka dots that are still in
Forrest's body.  If we all do, maybe THAT will do the trick!  I believe that
more than anything.

Much love and thanks,

Bar

Home
Friday, May 4, 2001 -- 9:16pm
Posted by Bar


Just wanted to let you know that we are home.  We got here this afternoon
and were welcomed by the brutal summer-like heat.  Forrest is doing fine,
although this heat makes his already difficult breathing even harder.
Tomorrow he should begin to feel much better.  I'm just glad to be home.
I'll be in touch when I get my strength back.  Right now, I'm pooped!

Much love,
Bar

Calling All Cheerleaders!
Monday, May 7, 2001 -- 6:02pm
Posted by Bar


Peter and I feel like we are now running the final mile.  And even as
we feel that way, doctors here in Albany are quick - very quick - to
remind us that we still have a long way to go.  But.....here we are -
feeling as though we may in fact be on the threshhold of blowing this
cancer out of Forrest''s body.  We actually spent time with his social
worker today talking about adjusting to the idea that we might acheive
a remission and how a parent and a patient need to prepare for that
change.  That's when the waiting really begins:  waiting for the
numbers to go up again, waiting for signs of the cancer returning.
It's a long and stressful wait with lots of check ups and sleepless
nights; when even the slightest temperature can throw a parent into a
tail-spin.  This is all potentially good news, but we're still not
quite there yet.  (However, I do feel remarkably confident that we
will be there soon.......time will tell.)

So, here's the latest:

Forrest is doing pretty well.  Still tender.  Very emotional and
scared to be back in the hospital.  I think he thinks that another
surgery is going to happen.  We are constantly reassuring him.  He's
glad to be back in Albany.  Everyone is familiar and very glad to see
him.  He's grown up a lot since we were last here 5 weeks ago.  We
start chemo in about an hour.  They'll hydrate him through the night
and start the actual therapy in the wee hours.  I cannot even
pronounce - let alone spell - the name of the chemo we are doing.  Its
nickname is ICE.  We'll be here through Saturday doing it.  It turns
out that this week won't be too bad with nausea etc.  Next week is
when all of that kicks in.  I'm glad for the delay.  Forrest needs
rest.  We've asked them to minimize the number of residents and med
students that visit him.  He needs to be left alone to watch his
videos and go to the playroom in peace.

Forrest had a kidney test throughout this morning which showed that
his kidneys are working perfectly.  That outcome helps the oncologists
determine how much chemo his system can tolerate.  When we left
Sloan-Kettering on Friday, the doctor drew the most-important blood
test called AFP - that's the blood test that tracks the life of
Forrest's tumor.  His AFP is now 466 (down from 388,000 when we
started in July).  He needs to be at 1 - 9, so there's a ways to go,
but it seems very possible.  We need it to be so.  If you're praying
for specifics, you might include that detail!

I've experienced tons of good omens today and am feeling quite sure of
success with this therapy.  At the very least, I am grateful that
Forrest will be mostly comfortable and not sick this week.  I just
could not bear that right now.

So, off we go.  Thank you for cheering us on.  We are truly fried now,
but are also full of hope and so glad that the surgical hoops are
successfully jumped through.

We are so grateful for your presence.  It has really made the
difference between sanity and insanity.

Much love from us all,
Bar, Peter and Forrest

Hi
Wednesday, May 9, 2001 -- 11:36
Posted by Bar


Good morning,

I feel like writing this morning but I don't know what to say.  My
communication skills seem to have broken.  The last two days have been
exhausting, just as they always are when we do chemo.  Something about
putting nasty chemicals into my little boy does me in every time.  However,
those same nasty chemicals may also be the thing that gets this cancer out
of his body.  A mixed, emotional blessing.  We/They did not actually start
giving Forrest's new chemo until 3:30 yesterday afternoon.  There was some
question about how much he could tolerate.  His bloodwork and his kidney
function are so strong, that when they did the calculations to determine how
much chemo he could reasonably have, the answer was way too high.  They
wanted to give him less even though it looked as though he could tolerate
more.  Everyone agreed, finally, to go a little easy on him since he'd just
finished two major surgeries.  In many ways this whole chemo thing is guess
work.  Any good oncologist will tell you that.  It's a little un-nerving -
and I was very un-nerved by yesterday afternoon.  There's so much tension
leading up to the administration of these drugs.  I am terrified that he
will have an awful reaction and that we will finally have put him over the
edge.  One thing we parents of cancer children are absolutely, completely
freaked out by is the possibility that we will do so much harm in therapy
that we will end up with an alive but terribly damamaged little person at
the other end.  It makes me sick to think about it.  And yet, we carry on,
and Forrest, as always, is doing beautifully.  When I left the hospital this
morning, after a pretty decent night of sleep, he and Peter and my mom were
happily making ice cream soup in the playroom.  Yesterday, after a horrible
night of no -sleep the night before, I did not get over here to Ronald
McDonald's until dinner-time and I was as distraught as I have been in
months.  These last three weeks of worry had caught up with me and I needed
a deep and thorough cry (which I endulged in not once but many times!)  When
I got back to the hospital last night, my mom was there.  I did not know
that she was coming and I don't know that I have ever been happier to see
anyone.  She was exactly the person I needed and there she was!  Moms are
the best.

As far as I know, we will be here until Friday night.  Chemo runs about 6
hours during the days and the rest of the time, Forrest is flooded with IV
fluids and vitamins.  We change many a diaper and he just goes about his
business of making soup and doing puzzles.  Life isn't too bad.  Speaking of
that, last night, in one of my moments of crying my eyes out, I said out
loud, "life is hard".  It's the first time I have ever said that and
realized the truth of the statement in the center of my being.  I've thrown
that line around so many times very casually.  Yesterday it was not casual
at all.  And I wasn't feeling sorry for myself either.  It was just a really
powerful understanding that life is truly hard - for everybody.  Seems
everybody is struggling with such hardness, doesn't it?  It's really the
stuff of living.  I cried a lot and then I didn't.  It was good.  And I do
feel better.  It's always good to have a mom around.

I hope that you all are well and that whatever you are dealing
with is manageable.

Much love to you all,
bar

Happy Mother's Day
Sunday, May 13, 2001 -- 9:52am
Posted by Bar


Good morning, Forgot about Mom's day until this morning when Forrest's
much-beloved teacher, Cheryl, stopped by to play.  They're upstairs now
playing hide and seek and looking for Blue's Clues.  (She knows exactly what
he likes and comes up with it everytime she comes over.  The joy he
experiences is the key to healing in my book.  When she's here, all is well
regardless of how it was before she came.)

So, we're home, and Forrest is doing great.  He felt a little punky
yesterday, but by late afternoon, he was himself again and this morning he
seems as happy as ever.  Amazing.  I am feeling GREAT too because it looks
as though we (Forrest) could actually beat this cancer.  The doctors are all
talking more positively, his AFP tumor marker number is going down and they
expect it to continue to do so.  I'm feeling joyful.  But I try not to get
too excited yet.  At the same time I feel as though I should celebrate,
celebrate, celebrate!  I haven't even had a chance to talk with Peter about
it.  Seems we're both too scared to celebrate yet.  There's always the
possibility that the damn thing will grow back again.  Unfortunately, with
hepatoblastoma, the odds are pretty good for that.  I am trying not to think
about that and just live in the idea that he will live, live.  live.  And
not only that, that he will live a long and happy life without any lasting
problems.  WOW!  I credit you, God, faith, hope, choosing-life, and the love
that we've been surrounded with, as the true healers.  That with all the
chemo and the fantastic doctoring that we have experienced has made this
moment possible.  I will tell you more when there's more time.  Right now,
I'm headed outside to feel the sun.

I love you all. Happy Mother's Day!
Bar

I just got an e-mail from another family whose son was just diagnosed with
this cancer.  I want them to know that there is hope and that they can beat
this thing.  But it's so hard to imagine their devestation.  It's been such
an incredible almost-a-year for us.  Phew!  Hard to believe how fast the
time has gone.

Another Day
Wednesday, May 16, 2001 -- 12:10pm
Posted by Bar


I wanted to write you again on Sunday, and I should have, but I didn't have
another moment.  I should have because I was in great spirits and wanted to
share some of it with you.  Today, I'm not feeling as great, but the same
stuff is still on my mind.  I'm a little low because Forrest and I aren't
sleeping as well as I would like this week.  The discomfort of chemo is
making him restless, as is the neupogen, which is a white cell rebuilding
drug that we give him IV each afternoon.  It's notoriously painful and
Forrest is not immune from that pain.  He seems remarkably strong and happy
during the day; but by 1am or so, he's not a happy camper and we're up every
45 minutes or so throughout the night.  I'm pooped.  My only comfort comes
from knowing that this too shall pass - and probably by the weekend!  I
remind myself over and over that next week I will be able to sleep.....can't
wait!

My happiness from Sunday came from celebrating Forrest's life and his
ability to keep going and beat the odds - or so it seems.  It's hard NOT to
celebrate.  I went to church Sunday morning and was shyly spreading the
word.  One of my friends at church, a guy named Simon, suggested that doing
a Thanksgiving Celebration would be a great idea and when would I like to do
that?  Did I think it was premature?  Well, when I thought about it for half
a second, I answered, "why wait?"  I mean, life is indeed short.  Why wait
until tomorrow or the next day.  Why not celebrate Forrest's life today.
Who knows what could happen next?  He could get hurt in a car accident or
fall off a jungle jim.  Or this cancer could rear its ugly head and we'd
start all over again.  Why not celebrate the distance he HAS gone and thank
God and the universe for that!  Why not!It's odd.  I felt celebratory on
Sunday.  This morning, I wonder why in general we don't celebrate more . I
have this sense that no one knows what to do with the fact that Forrest
seems to have decided to live.  And I include myself in that group.  On some
level, I think that we all expected him to die and we have been preparing
for that eventuality.  It feels like everyone is a little tentative to say
"Hallelujah!!"  I can't blame anyone.  I know what that feels like.  But in
the meantime, Forrest is alive and living and running around as if nothing
was the matter.  He's wobbly in his legs, but not in his spirit.  And even
his legs will grow stronger.  What are WE scared of?  I know that I am
scared of the waiting that we have left to do.  We will wait.  And we will
wait.  And we will wait.  They say that if Forrest can survive 5 years
without the cancer returning that we can celebrate then.  That's a long
time.  That's a lot of waiting.  That's a whole lot of fear.

I've gotten away from the joyful stuff that I wanted to share.  I guess it's
just impossible for me to hide my emotions when I sit down to
write......wish I HAD written on Sunday....What I was thinking about on
Sunday were the very simple words "God is Love".  Tom Miller used that
phrase in his weekly sermon and I was very struck by their simplicity and
missed the rest of the sermon, I think.  Regardless of who or where or how
you think about God, assuming that you believe in a God, the words "God is
Love" are, for me, what it all boils down to.  I mean, what IF God truly was
"just" love?  Wouldn't that explain a lot?  As a mom, how can I explain the
miracle of Forrest's life?  Every single thing has worked against Forrest
being alive this morning, and yet, there he is - playing outside in the dirt
with Peter.  Is it possible that our love (yours, mine, Peter's, our
families') truly has caused this miracle of Forrest's life?  Isn't it
amazing to think that the energy and power of love IS where God is?  WOW!
It's so simple and so GREAT!  And so easy!!  We all look upward to God.  I
noticed Tom doing that as he said prayers in church on Sunday.  Wouldn't it
be smarter to look side-ways to our neighbors, friends and family and see
God in them and in the love we feel for them?  Here I am sounding corny
again, but it hit me like a ton of bricks Sunday.  And, Tom's looking upward
does make sense on another level:  As much as I think that God is earthly,
the NOTION of God is of the highest level.  Symbolically, it makes sense to
look skyward.  I guess you could say that for me the location of God is not
important.  What is important is that we feel God in some way and that we
carry on looking for God throughout our lives.  I have come to believe that
God truly is everywhere.  As much as I have resisted the church (or any
organized religion and its meeting places and its writings and the structure
that they impose and the rules that I want to break), I realize that God is
in churches too.  God IS everywhere.Not just in churches and temples; not
just in the woods or in nature.  For me, despite my reluctance, I am finding
that hearing a good sermon, saying a few prayers that make me search and
think, and most importantly, sharing time with people who care about me and
whom I care about, is why I am finally getting back to church.  Anyway, the
words "God is Love" is what it's all about for me.  I finally realized that
as a fact on Sunday.

Peter and I are on the threshhold of re-building our lives and we feel
akward and uncertain about how to begin.  Forrest will undoubtedly lead the
way.  We need a baby-sitter again!  WOW!  That's great news!  Forrest can go
off with someone other than me or Peter, and I can start to think about what
I will do next.  Hard to imagine.  Truly.

How can I thank you enough?
With love, Bar

Another Week Goes By
Sunday, May 20, 2001 -- 10:07pm
Posted by Bar


I don't know about you, but time is flyin' for me.  As much as this year has
been agonizingly slow at times, it's hard to believe that nearly a year has
passed since Forrest was diagnosed.  This week just zoomed by.

Today's been quite the day.  We met with the Make A Wish Foundation this
morning to talk about the one thing that Forrest would like to do more than
anything in the world, and it looks like Blue's Clues is the winner!  We're
gonna try to meet Steve!!  For those of you with kids under, say, 8, you'll
know who I mean and you'll understand what a THRILL this will be for
Forrest.  For the rest of you, Steve is the living, breathing host of the
animated kid's show called Blue's Clues.  He's excellent in my book and
Forrest thinks he's the coolest, so off we go.  It looks like it will
involve a trip to LA, but who knows.  Guess we'll have to play Blue's Clues
to find out.  I'll keep you posted!

I've spent a fair amount of my thinking time going over and over this idea
that God is Love.  Here's my question:  if God is love and if I want myself
to look around me and feel love for everybody, what do I do with the people
that I don't like for one reason or another?  You know, what do I do with
the guy who creeps me out, or the woman who talks too much, or the brat who
whines in my ear???  I don't know how to love them.  I've only learned
really well how to judge them.  So, where does that fit into my superior
philosophy on God being Love?Well, it's a tight corner to get out of.  All I
can say is that I've concluded that I can't possibly love and want to hug
everyone in my life.  It's not realistic and it's not human.  There will be
plenty of people that I don't feel love for.  In fact, on some days, I would
say that most people are not loved by me (truth be told....and you have to
admit, you have days like that to, don't you???)  Anyway, the way I get
myself out of that tight corner is to say to myself that I don't really have
to love each individual.  I just have to be forgiving and compassionate and
respectful and honor them even if I choose to stay a good 50 yards away from
them!  I'm being a little silly here, obviously, but I'm serious.  I don't
think it IS realistic to love everyone.  But I do think I can aspire not to
judge harshly or to feel somehow better-than someone else.  And I also think
about a bigger picture of Love which is the love we feel for our lives and
for the way we live and work.  The idea that God is Love isn't necessarily
an expression of affection for another person, but could also be the way we
commit to the things we love to do.  And when we live and work with that
kind of love for what we are doing, God (and creativity) comes out of it.
If I apply all of that thinking to my own life, I realize how much I love to
sing and to write.  So often I feel as though I am being written through or
sung through.  Maybe that's God.

Lots of good stuff to think about these days.  Thanks for going there with
me and for all of your feedback.  It does me a world of good.

Back to Albany tomorrow for another blood test.  I'll let you know how
things go.  In the meantime, Forrest is doing just great.  Amazing to watch,
if I do say so myself.

Much love to you all, Bar

PS:  I'm frustrated.  AOL is my internet carrier.  I can't seem to get my
local carrier to load from my computer, so I stick with AOL.  It's a drag
for internet surfing and for writing these e-mails.  If you are wondering
why my e-mails are always bunched up from one paragraph to the next, it's
because AOL apparently squishes them when I send them out.  That's the
reason you'll see multiple XXXs at various places in my notes.  It's my way
of trying to trick AOL's internet program into forming paragraphs where I
intended them.  Alas, AOL is not tricked and my letters are hard to read as
a result.  One of these years, our rural home will be wired for faster
internet access and I will finally enter the modern age.  For now, I must be
content with a 28k modem and AOL's frustrating filters!

AH!  It feels better getting that off my chest!

53!
Wednesday, May 23, 2001 -- 3:34pm
Posted by Bar


Yes indeedy!  That's Forrest's AFP as of this morning.  That's the number
that we want to be 1 - 9 eventually.  But it's the trend towards zero that
is sooooooo exciting and we are quietly and not-so-quietly rejoicing here in
Woodstock.  Myself?  I just went off by myself and cried.  I swear that a
miracle is taking place.  It's hard to describe, and I don't know if it does
any good to try, but something major is happening before my eyes.  All I can
say - and I've been saying this over and over again today and every other
day in the last 11 months - is "thank you, thank you, thank you, thank
you,thank you, thank you, thank you".  I could say thank you for the rest of
my life and it wouldn't express my wonder and gratefulness....

All is well.  I hope it is with you, too.

With much love to you all,
Bar

Not Much To Tell
Monday, May 28, 2001 -- 5:18pm
Posted by Bar


The news from here is wonderfully dull.  Life is going on as it would for a
typical American family on Memorial Day:  a very wet and thrilling parade -
complete with fire trucks, ambulances, bagpipes and marching band - a hot
dog lunch, a barbecue of the health food store variety (whatever that means)
to take place later this afternoon.  I am in a state of bliss over the
normalcy of it all.  The weather has been spectacular.  First it's
gloriously sunny and hot and then within moments we are ambushed with rain
and lively electrical storms.  The umbrella we borrowed at the parade
repeatedly closed up while we were under it so that streams of cold rain
dripped down my neck.  It's been a wonderful day!

Tomorrow we head back up to Albany for our weekly bloodwork.  We went twice
last week just to make sure that the chemo wasn't really depleting Forrest's
blood seeing as a long weekend was coming up.  All was well.  Not perfect,
but not bad enough to warrant a transfusion.  'YIPEE' is all I can say about
that!  Transfusions are just plain tedious.  We lie around and wait for
someone else's blood to drip in to Forrest, and all the while watch the same
video over and over again.  Needless to say, lying around in a hospital bed
watching Teletubbies has lost its appeal for me!

(PS:  MANY MANY thanks to all of you who donate blood!  As much as
transfusions are tedious, they are also life-saving, and for that I am
enormously grateful.  Forrest has had his share of someone else's blood.
ie:  donate blood if you can).

It's reasonable to say that I am terrified about the next couple of months.
We have been advised to do one more round of this nasty, nasty chemo and
then finish with some radiation.  It's like a recipe: a dash o' this and a
dash o' that....Anyway, I want this all to end.  I don't want this last
chemo to be the one-too-many; the one that damages some vital organ forever.
The whole idea of doing it again makes my stomach turn inside out.  On
Friday, when we went to Albany, (where, by the way, we realized the other
day, we have driven at least 5000 miles to in the last 10 months!), I
finally understood why I have felt carsick every time we drive that 60 miles
north:  I'm simply scared sick.  Even when we are just doing routine
bloodwork, I just don't feel good at all.  I kept thinking that the reason I
felt lousy was because I always sit in the back and read with Forrest so
that his hospital-visiting experience wouldn't be scary.  I DID think over
all these months that I was just carsick.  Not so.  I'm just plain sick at
my stomach.  As soon as we pull out of their garage to head home, I feel
fine.  I guess you could say that I am done with hospitals.  Grateful for
their expertise, but ready to move on!

By the way, tomorrow we will determine what the next couple of months will
look like for Forrest.  In the meantime, I would say that Forrest is
functioning at an almost-three-years-old level!  I can hardly keep up with
him.  He's jumping on the bed, singing a lot - much to my delight - talking
up a storm, and making me laugh a lot, too.  He's 100% which is why the idea
of chemo one more time is so awful.  But it's the long term picture we have
to look at.....

As a final note, many of you have asked me if I would consider using these
e-mails to somehow fashion a book.  I have resisted the idea for a lot of
reasons, but I am beginning to see that I might like to do that.  I have not
saved any of the e-mails to date, but my father has (what a sweety!), and
just sent them to me so that I could begin to read through them - most for
the first time since I sent them out.  I started last night and found myself
doubting my writing abilities and doubting if anyone would be interested.  I
know that the process of putting a book together will challenge my self
confidence - which is often shaky - and, will force me to re-live some
difficult and emotional memories.  I welcome your input, as usual.  In
particular, I am interested to know which e-mails were particularly
meaningful for you.  Right now, I'm not sure if I'll use them all or how I
will edit them if at all, and your thoughts will help form my ideas on that.
Thank you all for giving me the courage to try.  I have wanted to write a
book since I was a kid, but didn't know what I would write about.  I'm not
much for creating characters, and I'm not an intellectual prone to research.
This book seems to have presented itself and I am excited by the idea of
writing it.  If nothing else, putting it together will allow me to sort out
this last year which, as you know, has been remarkable.

I hope that it has been a great holiday weekend for you all.
Much love, Bar

Less is More, More or Less
Wednesday, May 30, 2001 -- 5:28pm
Posted by Bar


What a morning.  Neither Peter or I slept well.  We were dreading the
results of Forrest's AFP blood test that would tell us whether or not our
celebrating was premature.  It's sooo hard this waiting.  I was a wreck.
Snapping at Peter.  Being snapped at by Peter.  Not knowing how to console
each other when both of us are a mess.  The oncologist didn't call and
didn't call.  And every call that did come in made me want to get sick as I
picked up the phone.  I guess this is what we will be doing for the next few
years:  waiting in terror.  Finally I asked Peter if he would call so that I
would not waste any more energy worrying.  And it still looks great!
Forrest's AFP is 23!!  Darn close to the 0-9 that he/we need it to be.  I
lost it as soon as Peter told me.  He'd already lost it, so we stood there
losing it together in a powerful hug that lasted many minutes.  It's hard to
talk, but hugs work.  We just KNEW what the other was feeling even though
earlier in the day we weren't able to rise above it.  All the while, Forrest
was upstairs playing happily with Hannah, his long-lost babysitter who's
back (Hallelujah!)  from her freshman year at college.  When he and Hannah
came down the stairs in the midst of Peter's and my sob-fest, I lost it
more.  I just needed to hold Forrest and tell him how much I love him.  He
was confused by my crying.  Hard to explain joyful tears to a little person
especially when you're still in tears!  Anyway, I think that he got the
message, and he was very happy to count to 23 over the phone to my
sister-in-law's phone machine!  Maybe next week the number will cut in half
again?  When is it that Peter and I will really honestly believe that
Forrest is well??  All we have to do is look at him to see that he is.  The
kid doesn't quit.  It's remarkable.  Thank God!

And I do.

Tons of love, Bar

PS.  Steve posted some new and ultra cute pictures of Forrest on my site.  I
LOVE the party hat one.  It's worth noting that that picture was taken three
weeks after his liver surgery.