Diagnosis Letter

Sent: Thursday, October 14, 2004 4:06 PM
Subject: Avalon


Everyone, please forgive the mass email.  This is the best way that I know to reach all of
you and make sure everyone knows what is going on.

For several of you, the basic information will not be new, but maybe I can answer some
questions you may have had.  For all of you, please consider this an open letter.  You
are welcome to share it with your family and friends, maybe it will spread a small amount
of understanding and do some good in the world.

Avalon Mirabelle Havan, our youngest daughter, was diagnosed Friday, October 9th,
2004 with leukemia.  Specifically, Avalon has Acute Lymphocytic Leukemia.  The
diagnosis was an utter shock.  

On Sunday, Oct 3rd - the girls and I had been at my parents' house.  Pappo mentioned
that Avalon felt hot when he changed her diaper for bed.  Sure enough, her fever was
full-blown by Monday morning.  We didn't worry at all, because Avalon was getting her
last molar and her two canine teeth, so we simply dosed her with Tylenol and I held her
constantly.  

Tues morning, Aurora, our nine year old daughter, woke up with a sore throat and
runny nose.  Well, that added a virus on top of Avalon's teeth, poor kid.  By Wed, I
decided to call the pediatrician, because Avalon's fever wasn't coming down with the
Tylenol doses.  Wed afternoon, we went to the doctor.  Avalon was negative for strep,
no ear infections, and could still cry and fight off the doctor.  Our probable diagnosis
was a virus or possibly a urinary tract infection - still nothing to worry about.  We went
home to make her comfortable and wait a day or two before we broke down and
catheterized her to catch urine.

Thursday morning, there was a tiny bit of blood in Avalon's diaper, so I called the doctor
and arranged to go in to have the catheter done so we could start antibiotics.  
Catheters aren't pleasant, so my dear friend, Nancy, agreed to keep Aurora and
Ambrosia for a few hours so they didn't have to be there for the ugliness.  Unfortunately,
by the time we did the catheter, Avalon was so dehydrated from the fever that she
couldn't cry, and she no longer fought off the nurse.

The nurse and I were not happy.  She brought in one of the doctors to consult.  
Thankfully, there are still pediatricians who listen to mothers, she listened to what had
changed in the last day and took me seriously.  She sent me to Children's Hospital ER
to get IV fluids - saying that once Avalon tanked up - we wouldn't believe how different
she would be.  Unfortunately, that was the beginning of a new life for us.  We never left
Children's.  

Thursday night and Friday we battled 105.3 fevers and the demons of the possible
diagnosis we were facing.  By Friday afternoon, Avalon was having a bone marrow
aspiration and a few hours later, we knew it was, indeed, leukemia.  Although this letter
has so far been a timeline, that's not really my intention.  Cancer is not so much about
schedules, dates and history, its about the people it touches.  

I will never be able to fully convey to anyone, the horror of hearing what we did.  In fact,
I'm not sure its appropriate to try, until you realize that there is something to be learned
here.  In the emergency room, we were told that Avalon's blood counts were all very low,
they felt that the sample had been contaminated because it was taken at the same time
as the iv fluids were being started.  The resident assured us that they would redo the
tests and let us know what they found.  When she eventually came back, her face said it
all.

At first, all they told us was that her bone marrow was being suppressed and not
producing enough blood.  They were very careful to first mention the possibility that a
virus can cause suppression.  In fact, I'm the one who first said the word leukemia.  At
that moment, the whole world stopped and all I could feel was a stone in my chest and
pounding in my head.  I have never cried so hard, or so violently in my life.  A thousand
times a thousand we told her how much we love her and how much we need her.  A
thousand times a thousand we fought off overwhelming feelings of dread, disbelief,
horror and from-the-core fear.

Some of the next few hours are a blur.  Our ER nurse was kind enough to have us
moved to a more private location, to grieve without the prying ears of strangers.  When I
took Avalon to x-ray and stood sobbing in the hall, our ER resident came, off shift, and
offered to spend the night sitting with us, holding my hand.  I've never needed a
stranger's hug more.  The looks of the staff as we passed them in the halls, moving from
one room to another, said volumes.  They may have to learn to distance themselves to
survive...but they felt our pain and tried to help us hold on.  

In fact, holding on, is about all you do in the first hours and days.  In the beginning, all
you can do is cry.  You fight to not imagine what you know can happen.  You hold tightly
to images of your child healthy, and fight the overwhelming disbelief that this is real.  
You agonize over every breath, every sigh, and you learn the literal meaning of a
"heartache".  When you think you cannot fear, cry, ache or experience any more pain,
you find new ways of torturing yourself.  You pour through "what-ifs" and you sob over
"whys".  

For me, the hardest parts were the initial introduction of the term, leukemia, with respect
to my beloved child.  Then, the awful first time you walk through the doors of the
hematology/oncology unit.  The unit is, by design, meant for long term living.  It is a
daunting, horrifying door to walk through, at least at first.  

The best that I can tell any of you, is an analogy that I've used to try to explain the
basic, core feelings through this.  At that moment of introduction, your heart stops and
is replaced by cement.  My chest was so heavy, I didn't think I was actually breathing.  
You hold your breath, and start an incredible balancing act, like you are teetering on
the edge of a bottomless cliff.  We spent hours like that, hoping, praying... in fact, its
almost more than a prayer.  Its more like a body wish - your very essence begs the
universe for mercy.  

Then suddenly, wham - someone shoves you off the cliff.  There is no going back.  Your
life, your dreams, your expectations for your family and your children...are gone.  You
freefall and can't imagine how you'll ever survive.  In fact, all you can imagine is that its
all a bad dream and please God can you wake up back on firm ground.  Then again,
you realize that firm ground is gone, and you free fall a little farther.  

For me, part of the free fall was pure anger.  The people we spoke with were sad,
sympathetic, suffering with us.  But I was angry - they could not possibly know the depth
of our pain.  Even my parents, as devastated as they were, they still angered me.  How
could they understand?  I, their daughter, am 37 years old and healthy.  My own
daughter was facing something that may keep her from reaching 3, much less 37.  Their
pain just intensified my own.

Then, I met someone who stopped my freefall.  One of our nurses had a mother from
down the hall come visit me.  When she asked about my daughter, I thought she was
just another hospital worker and rattled off the information like the tape recorder I had
become.  Then she said, "My daughter has...".  In an instant, someone else knew our
pain - and I grabbed her and held on for dear life, literally...for life.  For me, the healing
began there.

I am choosing to bare my soul to all of you, and hopefully countless others, because of
what is happening now, not just, what happened then.  You see, free falls can only last
for so long.  Ours is over.  The time comes, when you have to decide to either free fall
into oblivion, or figure out how to survive that fall.  We are going to survive, and we are
going to do it together, all of us, as a family, and with our community.

I would not have ever signed up for this fraternity, but I can say that life on the "inside"
has more lessons to teach than one simple letter can ever convey.  Nick and I have
learned the joy in a minute of time, rather than struggling to get through an hour.  We
have learned about the unfathomable resiliancy of a child's heart.  We've learned that in
the most awful of circumstances, humanity will win out.  

Yes, people in the hematology/cancer ward actually laugh.  In fact, they do it often.  
Yes, our children look different than those in magazines, but they still play, laugh and
love.  A week ago, Avalon may have gotten in trouble for eating dog food.  Yesterday,
she got in trouble for sucking on infusion ports on the iv coming out of her chest wall.  
Last week we cheered when she said the word "apple", now we cheer when she takes
her medicine.  After days of torturous screaming, she now claps and "yays" for herself,
through her tears after meds.  

Nick and I have learned more lessons than I can figure out how to describe.  We have
learned that people are good, kind and generous and that we have the best friends on
earth.  We have learned that our family will go to hell and back with us and will give
every ounce of their strength to make sure our kids get through this.  We have learned
that there are nurses and doctors whose time, patience, strength, and purity of spirit
can never be truly rewarded.  The universe does not have enough power to repay what
these people give.

Our nurses are special people.  They cheer for our children, listen to our fears, cry for
pain they must inflict, and cry harder for the small joys the children share with them.  
Sunday was a miserable day for Avalon.  Her IV blew and she had to have another for
transfusions necessary for surgery.  They took her to a treatment room so an IV team
could put in a new one.  Forty five minutes later, she had nothing.  They let her rest,
and tried again - with new experts.  Again, nothing.  The nurses cried with Nick and
Avalon - they couldn't believe what she was having to go through.  They combed the
hospital, looking for the best person - and we all agreed to one more try.  Thank
heavens, it worked.  That night, as our two nurses poked their heads in to say
goodnight...in spite of all of it...Avalon waved goodbye to them.  They both teared up
instantly.  There are no cold, professional people here.  There is love, compassion and
a giving quality about these people, that can never be described.

What I am trying to say to all of you, is that you can survive.  We will survive.  From the
darkest pains can come the brightest moments.  Yes, we have a long fight ahead of us.  
Yes, we still battle demons and face fears, but we are here and we will win, with your
help.

Many of you have asked what you can do to help us.  First of all, bless all of you who
have graciously offered of your time and prayers.  We have heard them, and fervently
believe that higher powers have too.  I'm sure that each prayer offered for Avalon has
given us back a small piece of our spirit.  By far, the most important thing anyone can
do is to continue to send her love and support - we honestly appreciate every ounce of
it.

Before I address any selfish requests, we have many more universal ones.  Please,
please, please...encourage everyone you know to donate blood and plasma.  Not once,
but as a lifetime gift.  Avalon has already received two units of blood and one of plasma.
 During the next few years, she will receive dozens more.  A few minutes of time, is a gift
of life to our children.  Also, please join the national bone marrow registry.  Avalon may
not need bone marrow, but Gage, Abigail, or Wyatt down the hall may.  Their families
are as desperately in love with them as we are with Avalon.  What greater good can you
do in the world than to give a family back their child?

As for children, hug the children in your life as if you will never let go.  Life is a beautiful,
fragile gift that all of us squander too easily.  I thought we had a handle on things, not
worrying about material possessions, concentrating on family.  No, we had barely
scratched the surface.    Joy is a child's smile as they look at you, not what you have
acquired or accomplished that day.   Pain is not missing out on an opportunity or not
getting a material item.  True pain is a child begging you for relief from agony, when you
have none to offer.  Love is an endless ocean of understanding, nurturing, caring and
giving...and should not be reserved for a few people in your life.  In its highest form, love
is given freely and openly, with no personal gain in question.  I firmly believe that our
nurses love each of these children.  And I can promise you, that we love each of you
and those who have joined you to help us.

As a family, we have been uprooted, upended, devastated and demoralized.  But we are
stronger, and more in love with each other than I ever thought possible.  We are
financially devastated, the girls and I cannot come home, our next few years will be a
blur of doctors and procedures, but we are the luckiest people I know.  We have each
other, and we have a circle of friends that love us.  Little more matters.  Please, in your
heart, find that deep connection with your children and your community, we  all truly
need each other.

Many of you have expressed an iterest in helping us through the "business" of life.  Yes,
we can use your help and do need it desperately.  I have found it to be a rare gift to be
in the position of needing to ask for help.  Please understand what I mean, it is a gift to
have a fellow human believe in your worth enough to be willing to offer their assistance.  
The fact that many of you has offered, has already helped our mental healing in ways
you cannot imagine.

First of all, we need lots of help with the house itself.  As you know, we have been
remodeling the family room and front porch.  This was a daunting task, at best.  Well,
Avalon will not be able to come home until it is finished.  In addition, once the family
room is done, our dining room carpet and walls will have to be replaced.  The number
one danger for a leukemia patient is infection.  Our hem-onc says that infections are a
greater mortal threat than the leukemia itself.  Leukemia patients are extremely sensitive
to airborne pollutants, dust, mold, etc.  Our house will have to be spotless and be able
to be kept that way.  

We need help packing up all of our collectibles - they keep too much dust.  We need
help hanging the new ceiling, installing the new floors, finishing walls, moving furniture,
cleaning toys, rebuilding the fireplace, just to mention a few.  
We may need help with taking the girls to dance or staying with them during chemo
treatments.  We definitely will need help keeping their lives sane, they've lost quite a bit
recently.  We may need help at Christmas, or for Aurora's birthday, little girls need
Christmas wonder and joy, even when their family is short on it.  Basically, yes, if you
are willing to help, we will graciously accept your blood, sweat and tears, and hope that
we can repay you in some small way, someday.

Several people have already become our angels on earth.  Aurora and Ambrosia have
already moved in with my sister, as will Avalon and I when she leaves the hospital.  My
mom and Nett and Darby have taken huge amounts of time off of work so that we
haven't had to worry once about the girls - they have absolved us from that.  Jeannie
and Travis have taken our puppy to their house so that he can grow and flourish until
we can come home.  If that wasn't enough, they are attending to the cats and dogs still
at the house, and even water my plants.  They have removed another huge amount of
worry from two hearts that are quite full at the moment.

In all, I want to say thank you to all of you.  Those of you who have been with us this
week, and those of you have cried with me through this letter.  Each of you, and anyone
you share this letter with, have a place in our hearts and an importance in us finding our
way.  Avalon may be tiny, but she has had a profound impact on our world, and I hope,
just a bit in yours.

Please, hug your family, send love to a friend, and know that each of you is important to
us.  

Blessed Be,
Alicia, Nick, Aurora, Ambrosia, and most importantly, Avalon
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