{This was written by my dad, James}
Nicole was originally life-flighted from Logan Regional Hospital to Primary Children's Medical Center (PCMC) in Salt Lake and diagnosed with two forms of Leukemia in December 2011 when she was 4 months old. She had both ALL (Acute Lymphoblastic Leukemia) and AML (Acute Myeloid Leukemia), which is very rare. To further complicate matters, both the ALL and the AML had MLL (Myeloid/Lymphoid Leukemia) gene re-arrangements associated with them - in other words, even the Leukemia cells were not 'normal'.
Nicole was originally life-flighted from Logan Regional Hospital to Primary Children's Medical Center (PCMC) in Salt Lake and diagnosed with two forms of Leukemia in December 2011 when she was 4 months old. She had both ALL (Acute Lymphoblastic Leukemia) and AML (Acute Myeloid Leukemia), which is very rare. To further complicate matters, both the ALL and the AML had MLL (Myeloid/Lymphoid Leukemia) gene re-arrangements associated with them - in other words, even the Leukemia cells were not 'normal'.
ALL
and
AML
are
treated
with
different
kinds
of
chemotherapy
which
cannot
be
easily
mixed,
and
due
to
its
rarity,
a
standard
treatment
protocol
for
her
diagnosis
does
not
exist.
The
MLL
gene
re-arrangements
added
an
additional
layer
of
complexity
to
treatment
as
well.
Due
to
her
diagnosis
and
her
very
young
age,
Nicole's
original
prognosis
was
extremely
poor,
with
perhaps
a
5%
survival
rate
(though
hard
statistics
are
unavailable
for
her
diagnosis)
-
she
was
not
expected
to
live.
In
fact,
when
she
first
arrived
at
PCMC,
the
doctors
weren't
even
sure
they
could
stabilize
her
long
enough
to
begin
administering
chemotherapy.
Even
after
she
survived
the
initial
trauma,
privately,
she
was
known
as
'the
scary
baby'
by
the
PCMC
medical
staff,
because
she
was
in
such
bad
shape
and
her
diagnosis
was
so
bleak.
By
the
end
of
her
long
journey,
the
staff
referred
to
her
as
'the
girl
with
nine
lives'.
I
cannot
adequately
describe
what
she
suffered
and
endured
in
detail
-
it
was
awful,
even
by
'normal'
Leukemia
treatment
standards;
I
will
simply
say
that
she
was
hospitalized
almost
continuously
for
10
months,
with
roughly
one
third
of
that
time
in
ICU
(the
time
in
ICU
was
spread
over
numerous
different
incidents).
I
am
aware
of
at
least
five
occasions
when
her
suffering
was
to
the
point
of
death.
She
is
alive
today
due
to
the
mercy
and
power
of
God,
and
the
most
incredible
thing
besides
her
survival
is
how
well
she
endured
it
all.
 |
| Captured Moments Photography |
Nicole
came
home
in
October
2012
at
14
months
of
age,
following
a
successful
Bone
Marrow
Transplant
(BMT)
in
May
of
2012.
She
had
been
confined
to
a
crib
for
10
months
and
was
very
weak
-
she
couldn't
even
roll
over
at
that
time.
For
several
months
following,
we
had
to
administer
34
doses
of
18
different
types
of
medication
around-the-clock,
and
she
was
also
on
a
feeding
tube
(and
had
been
during
her
entire
hospital
stay).
Due
to
the
side-effects
of
chemotherapy
and
radiation
treatment,
she
had
suffered
severe
cases
of
Mucositis
(which
is
like
terrible,
painful
mouth
sores,
but
it
affects
the
entire
digestive
track,
not
just
the
mouth),
which
resulted
in
a
severe
oral
aversion
-
the
only
thing
she
wanted
in
her
mouth
was
her
pacifier,
and
everyone
was
amazed
that
she
would
suck
on
it,
even
during
the
worst
stages
of
Mucositis.
We
also
had
regular
check-ups
at
PCMC,
weekly
at
first,
then
less
frequently
as
more
and
more
time
passed.
 |
By
early
summer
of
2013,
her
medications
had
all
been
tapered-off
and
eliminated
one-by-one,
and
she
had
finally
started
eating
and
we
were
able
to
get
rid
of
the
feeding
tube.
She
was
a
year
post-transplant,
and
her
bone
marrow
and
immune
system
were
getting
stronger
and
stronger.
She
was
doing
beautifully,
and
we
started
going
to
check-ups
only
once
every
three
months.
Though
still
a
little
behind
other
children
her
age,
she
was
rapidly
gaining
on
her
developmental
skills.
The
PCMC
staff
was
amazed
with
how
well
she
was
doing.
By
the
end
of
2013,
it
was
beginning
to
look
like
we
were
home-free.
(Relatively
speaking,
of
course.
The
potential
long-term
side
effects
of
Nicole's
chemotherapy
and
radiation
treatments
are
numerous,
and
will
always
be
a
specter
hovering
in
the
back
of
our
minds.)
However,
about
a
month
ago
we
noticed
a
‘goose
egg’
on
Nicole’s
right
temple.
At
first
we
assumed
she
must’ve
fallen
or
bumped
into
something,
even
though
no
one
had
witnessed
it.
 |
You can see the bump in this photo.
|
A
couple
weeks
passed,
and
it
didn’t
seem
to
be
improving/changing,
maybe
even
getting
a
little
bigger,
so
we
took
her
to
the
local
InstaCare
in
Logan
(hoping
they
might
verify
that
is
was
just
a
simple
trauma
bruise
–
though
we
were
starting
to
have
our
doubts).
Due
to
her
past
history,
the
doctor
contacted
Nicole's
oncology
doctor
at
PCMC,
and
then
we
went
in
to
see
that
doctor,
and
to
have
some
lab
testing
done.
Her
blood
work
looked
good
(and
she
hadn’t
been
showing
any
other
symptoms
of
a
relapse),
but
after
some
consultation,
the
oncology
team
at
PCMC
decided
to
have
an
MRI
done
on
the
mass
in
order
to
see
if
it
would
help
them
identify
what
it
is
/
what
is
causing
it.
due
to
her
age,
Nicole
had
to
be
sedated
for
the
MRI
which
occurred
on
February
5,
2014
at
PCMC.
The
conclusion
from
the
MRI
scan
was
that
it
definitely
wasn't
a
trauma
bruise
(which
we
were
already
assuming
at
this
point).
The
tissue
was
clearly
inflamed,
but
they
still
were
not
certain
of
the
cause;
it
is
very,
very
unusual
for
Leukemia
to
manifest
itself
in
this
way
(as
a
localized
Leukemic
mass,
with
no
signs
in
the
blood),
but
it
is
not
completely
unheard
of.
They
scheduled
a
surgery
for
a
neurosurgeon
to
do
a
biopsy
of
the 'mass'
on
Monday,
February
10,
and
on
February
11,
the
result
came
back
that
is
was
an
ALL
mass.
On
Wednesday,
February
12,
Nicole
went
to
PCMC
to
be
admitted.
As
with
the
biopsy
on
the
10th,
she
had
to
go
to
the
hospital
fasting.
They
did
a
heart
echo,
then
an
EKG,
then
a
bone
marrow
aspiration,
then
a
lumbar
puncture
(spinal
tap)
which
included
a
chemotherapy
injection,
and
then
surgery
to
place
a
central
line
in
her
chest
(used
to
administer
chemotherapy
into
the
bloodstream.
There
was
a
minor
complication
with
the
surgery,
and
she
had
to
have
some
follow-up
x-rays
taken
to
make
sure
no
damage
had
been
done
to
her
right
lung.
She
wasn't
able
to
eat
or
drink
anything
until
about
11
PM.
Through
all
of
this,
she
was
very
calm
and
uncomplaining
-
a
miracle
in
and
of
itself,
but
she
was
like
this
throughout
her
first
bout
with
Leukemia
-
things
had
to
get
really
miserable
before
she
would
express
it.
They
started
chemotherapy
late
the
following
night,
February
13.
Nicole
remained
in
excellent
spirits
throughout
the
day
on
Friday,
February
14.
She
seems
very
much
at
home,
and
has
not
been
shy
with
the
hospital
staff,
but
by
Friday
evening,
the
effects
of
the
chemotherapy
were
beginning
to
show,
and
it
gets
much
worse
before
it
gets
better.
.jpg)
This
particular
chemotherapy
protocol
that
is
being
administered
originates
from
the
U.K.,
and
has
been
very
successful
at
treating
patients
with
an
ALL
relapse.
One
of
the
doctors
that
the
PCMC
staff
consulted
with
during
Nicole's
original
battle
will
ALL
and
AML
due
to
her
unusual
case
and
treatment
has
recently
transferred
from
New
York
to
PCMC,
and
she
has
been
put
in
charge
of
Nicole's
case;
she
is
a
recognized
expert
in
the
field
of
childhood
cancer.
Based
on
the
results
from
the
bone
marrow
aspiration,
the
lumbar
puncture,
and
blood
tests,
Nicole's
Leukemia
relapse
is
totally
confined
to
the
mass
on
her
temple,
and
it
is
only
ALL
(not
AML
and
ALL
like
last
time).
Her
spinal
fluid,
blood,
and
bone
marrow
are
currently
all
still
perfect,
and
her
body
is
otherwise
very
healthy.
This is
still
a
heart-wrenching
diagnosis,
but
given
what
she
faced
previously,
the
doctors
are
very
optimistic
(not
like last
time)
about
her
treatment
and
recovery.
Obviously,
it
is
still
cancer,
and
still
potentially
fatal,
but
we
have
had
a
peaceful
feeling
that
she
will
survive,
and
this
diagnosis
only
reinforces
our
hope.
There
are
many
things
working
in
Nicole's
favor
this
time
compared
to
last
time,
and
we
are
hopeful
that
the
outcome
will
be
a
permanent
remission
of
her
Leukemia.
The
current
plan
(and
everything
is
always
subject
to
change
when
it
comes
to
cancer
treatment
in
general,
and
Nicole
in
particular)
is
to
do
three
blocks
of
chemotherapy,
and
then
go
to
another
Bone
Marrow
Transplant
(BMT).
Each
block
will
be
roughly
one
month
in
duration,
with
roughly
a
week
at
home
between
blocks,
depending
on
her
recovery
each
time.
This
is
similar
to
the
last
time,
but
Nicole’s
body
was
weaker
and
smaller,
and
her
Absolute
Neutrophil
Count
(ANC
-
a
measure
of
the
body's
immune
system)
didn’t
recover
well;
she
didn’t
get
to
go
home
at
all
between
the
third
round
of
chemo
and
the
BMT,
and
there
were
many
other
complications
as
well,
which
we
will
hopefully
avoid
this
time.
Also,
the
chemotherapy
protocol
is
not
quite
as
intense
as
last
time,
and
she
shouldn't
suffer
Mucositis
as
a
side
effect
of
these
drugs.
The
BMT
will
also
be
similar
to
last
time,
with
a
battery
of
radiation
treatments
and
some
truly
awful,
high-dose
chemotherapy
at
the
beginning,
immediately
prior
to
the
transplant,
and
then
a
few
months
of
hospitalization
following
the
transplant.
Of
course,
everything
is
subject
to
change
as
time
passes.
.jpg)
Nicole's
current
diagnosis
is
actually
good
only
in
comparison
to
her
original
diagnosis
-
in
all
reality,
this
is
devastating
news,
and
for
a
‘normal’
case
Leukemia
relapse,
the
chances
of
survival
become
significantly
lower.
In
Nicole’s
particular
case,
however,
they
are
significantly
higher
(since
when
you
start
at
roughly
0%,
it
only
gets
better
from
there).
That
said,
although
the
specifics
of
her
treatment
will
be
different
from
the
last
time, overall,
it
will
likely
be
much
the
same
as
her
first
go-around,
but
hopefully
without
many
of
the
particular
life-
threatening
difficulties
she
previously
experienced.
I
know
what
Nicole
is
going
to
go
through
again,
and
it
makes
me
weep.
I
hoped
this
would
not
happen,
but
it
has,
and
now
she
must
endure
again,
and
we
must
be
witnesses
to
her
suffering.
I
know
that
God
is
a
God
of
Truth
and
cannot
lie;
I
know
that
He
always
fulfills
His
word.
By
the
voice
of
His
Holy
Spirit,
and
by
the
voice
of
His
servants,
I
know
that
God
will
strengthen
Nicole
and
she
will
triumph
over
Leukemia
again.
When
she
was
in
the
hospital
the
first
time,
we
discovered
that
'Nicole'
means
'victory
of
the
people'
or
'victorious
people';
by
the
will,
the
power,
and
the
mercy
of
God,
may
it
be
so,
in
the
name
of
our
Savior,
Jesus
Christ,
amen.
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