Date: Thu, 20 Jan 2000
Dear Friends and Family....
I've just returned from Children's Mercy Hospital after the most
grueling
stay
I have ever gone through there. Diana is now with Rachel.
We brought Rachel home from the hospital last Friday after her fever
was
broght
down. Last weekend she slowly worsened... stuffiness in her chest,
"gunk"
in
her nose and eyes. Finally Monday we could take no more and called
the
hospital. Fortunately her temperature had gotten high enough to
give us
the
extra push to get her back in as well. We drove there with her and
Diana
dropped Rachel and me off.
Monday and Tuesday were days of preparation for a lung biopsy... an
incision
made into Rachel's lung to sample a spot there in question to see if
the
infection was bacterial, viral or fungal. Fungal would be the
worst. In
the
words of the bone marrow doctor: "Nobody wants to hear the "F"
word."
During this time it became evident that Rachel was showing signs of
Graph
Versus Host disease... I have not defined this correctly in the
past.
What
it
means is that Amanda's new blood cells recognize Rachel's body as
"foreign"
and
begin attacking it. Large red blotches began to appear on Rachel's
face,
legs,
arms... and they itched like crazy. So.... oozing gunk in the eyes
and
nose,
nausea at least twice a day, itching rashes, high temp, coughing
fits...
and
certain medications made Rachel's face bloat to the point where her
eyes
were
mere slits.... in short, misery. I applied the creams, I dabbed
the
eyes,
I
put her in special baths, I held her during the nausea and while she
cried.
The nurses and aides were, as always, terrific.
Diana had been through something very similar during the worst of
the
bone
marrow transplant and done similar things.... you only hear from me
because
I'm
the writer in the family. I missed those hard days but went through
these
instead.
Tuesday afternoon, after a medicated bath to relieve itching, Rachel
stood
in
front of a mirror in the bathroom with her nightgown on, looking at
herself.
She turned to me and said: "Daddy, I'm so ugly. Am I still your
little
princess?"
A nurse in Topeka had spoken to me once of her son who had a
disability
that
made him look different than most "normal" people. She told me he
was
beautiful in life and in heaven he would shine out just as
beautifully as
he
did on earth. She spoke with a power and belief that I didn't
grasp....
one of
those "ultimate truths" that we don't fully get until it stands
before us
in
all its glory. I stood there, looking at my daughter... and I
understood.
I
knelt in front of her and told her she was, is and would always be
my
brave,
beautiful princess... and I meant it... and she knew it.
Wednesday, the day of the biopsy/operation came. I was told that
Rachel
would
go into surgery, they would do the biopsy, she'd spend a few hours
in
recovery,
and then head on back to her room.... (i.e... the best laid plans of
mice
and
men!).
Things didn't go as expected and she was put into the Intensive Care
Unit
overnight. I had not been told that this was a possibility... a
mistake
by
the
medical staff. I was kept out of intensive care for an hour while
she
screamed
for me. When I arrived she was angry at all adults... they'd all
"lied
to
her." She was especially mad at me... her father had lied. She
wasn't
back in
the room. OK... Diana and I are not always a tower of strength. I
lost
it.
The medical staff was full of apologies... they should have said
this
might
happen but didn't. Took me about five minutes to get ahold of
myself...
no
yelling... but some words and tears.
I was told that I couldn't stay with Rachel over night in ICU...
it's the
rules... but rules are made to be "stretched." I was able to sleep
in
Rachel's
regular room but was called back to ICU twice for extended periods
of
time
to
calm down Rachel!!! She was mad at me but she wanted me to be
there! So
I
was
there much of the night.
The lung they took the biopsy from hasn't quite recovered from the
biopsy.
It
is recovering slowly... thus the reason for the stay in ICU. This
afternoon,
before Diana showed up, Rachel was back in her room. We're back to
square
one
with trusting adults. When I called the hospital upon my return to
Topeka
Diana told me that Rachel had told her that she didn't want to talk
to
her
at
all... loudly.... and Diana wasn't even there during any of what
went on.
The
doctors are planning more work on her tomorrow and we've already
talked
to
the
psych folks and the head nurse for bone marrow saying that Rachel's
mind
has to
be healed a bit first before anything else is done medically.
These are hard times. I am blunt with some things because it brings
home
the
hardness to all of you. It also brings out the wonder of the
special
moments
and the "victories." Diana and I do some crying. Rachel rants and
raves.
But
there's a lot of love in those tears and there's a heck of a lot of
strength/determination in that ranting and raving. They were giving
Rachel
a
lot of oxygen last night in Intensive Care. By this afternoon the
level
of
that oxygen had been cut by 60%.
I talked to Rachel about her anger too... as has Diana in the past.
She
had
a
darn good reason to be angry at everyone. We all made a mistake.
ALL
involved
apologized for not being forthright. She was surprised when I told
her
that
Mom and Dad were angry too. She asked me what I did when the ICU
thing
happened... I blew up; I cried and felt helpless; I sat and thought
about
what
was happening; I decided what I needed to do; I started doing it...
and I
sloooooowly tried to forgive others (the hardest part... and not
always
the
most successful). I told her sometimes I do this many times during
the
day
and
that Mommy has said that she does similar things... we just keep the
blowing
up/crying/helpless part inside us better so she doesn't see
that!!! She
looked at me with those wondering/piercing eyes... visible even
through
her
pudgy slits! Part of growing up is learning that your parents are
human
beings... like you... not an easy task for child or parent.
Last night, to battle the Graph Versus Host disease, they started
Rachel
on
steroids which will confuse Amanda's blood cells and make them more
docile.
Of
course there may be negative side effects... a rough time. We
appreciate
your
prayers and kind words.
Bill Sowers
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