Amanda:
When I woke up,
I didn't really remember
large periods of time.
I just remember just feeling
very, very little
in the hospital bed and lost.
- On March 27, 2014,
Amanda became very ill.
- I do remember
not feeling well.
I was having frequent
migraine-like headaches
that would actually kind of
radiate down my neck,
giving me, you know,
soreness of the neck.
I wasn't thinking anything
other than maybe stress.
- She said, "I'm not crazy,
but I can't sleep.
I'm hearing things.
Please help me."
And then she'd wake up,
and she always said
she heard people talking to her
through the lights,
through the TV,
that wasn't even on.
- I don't remember any of that.
- On the fifth day
of not sleeping,
the family doctor said
that we need to bring her
to the emergency room
at our local hospital.
They told me that my daughter
was bipolar or schizophrenia.
- I think they thought I was
also on some type of drugs.
I was acting like somebody on...
- PCP or LSD or bath salts. That's how she was acting.
- So they thought
I was on drugs.
- I said this is just not her
and there's something
really wrong with her.
But, when the psych doctor
at the local hospital
evaluated her, he said
we need to have her committed.
They couldn't control her.
She was trying to
climb out windows.
She kept saying
she had to get to work.
She didn't belong here.
When you were
in the psychiatric hospital
and my husband and I
did get to see her,
we went in the room,
and her reaction was,
she didn't even know
who we were.
She did not know who we were.
She came up to us and I said,
"Amanda, it's Mom,"
and she just looked at me
and she said,
"Get me out of here,
get me out of here,
get me out of here."
One of the tests
that they did on Amanda
in the hospital
was a lumbar puncture.
Within a week,
we got a definite diagnosis
that Amanda was suffering from
NMDA receptor encephalitis.
My husband and I
looked at each other
like we had no idea
what that was.
We went home.
I Googled all the information
I could find
on the NMDA receptor encephalitis, which isn't a lot,
but we did come across the site from Penn Neurosciences,
and they are the place
that discovered this illness
and they're doing
tons of research on it.
And we decided that this is
where Amanda needed to go.
So, I came back to the hospital,
our local hospital,
and I said we need to get her
transferred to Penn right away.
Unfortunately,
they didn't agree.
They thought
that they could treat her,
and I said,
you get me an ambulance,
or I'm just putting her
in the car.
Upon being admitted
to Penn Neurosciences,
I met Dr. Eric Lancaster and
the team of doctors and nurses
that work alongside with him.
- Amanda was previously
very healthy.
When she first arrived here
at Penn,
transferred
from an outside hospital,
she was comatose
and unresponsive.
- He said to me, the treatment
is a combination
of two chemotherapy drugs, Cytoxan and rituximab,
and he said then after she gets
all that treatment,
when they start coming back,
sometimes they don't know
how to walk again,
they don't know how to talk.
They have to learn
how to feed themselves.
- I recall that she responded
very rapidly,
perhaps more rapidly
than most patients
to the infusion of
these second-line agents,
and woke up from her coma
within several days
of that being started.
- I mean, it all felt
like a dream, I guess,
that with my Mom.
Everything was a dream,
and I really didn't
remember much
until like probably August.
- I guess it was like
three weeks after receiving
her doses of rituximab
that I went into the hospital,
and the nurse greeted me as
I walked through the ICU door,
and she said, "Oh my God!
Wait 'til you see your daughter.
She's sitting up.
She's starting to talk."
And I just couldn't believe it. I just stood there.
My mouth dropped, like what?
And I went in the room
and there she was,
sitting in the chair
and a smile on her face.
I mean, she gave me
a big hug and...
you don't remember, do you?
And she just said to me,
"Where am I? What happened?"
It was just such a joy
because they told me
she would be fine,
and I got to see
that she would be fine.
Dr. Lancaster:
I remember meeting her
in her followup clinic visits,
and I sort of saw
the life breathe back into her
over the next few months
as she followed up with me
in clinic.
- Finally, I could say,
it's been a year,
I feel like I'm...
I mean, I'm back to myself.
It's been a long road.
I thank Dr. Lancaster,
Dr. Dalmau.
It was really exciting
meeting him,
and he just told me,
just with a big smile and a hug,
"You just live your life first. Just live your life."
