All language subtitles for Salt.In.My.Soul.2022.WEBRip.x264-ION10

[♪♪♪♪♪]

[keyboard keys clicking]

[♪♪♪♪♪]

[kids shouting playfully]

[Mallory] I'm not necessarily

the most fearful of death.

[kids playing]

[Mallory coughing]

[Mallory] but I do think

that when you leave
people behind

that had fought so hard
to keep you alive

and that have invested
all of their energy

for years and years
to keeping you alive

as long as possible,

I think that would be
devastating.

So I think my biggest fear is
that my parents would

have to deal with my death
instead of the reverse.

[heart rate monitor beeping]

[woman] These are the phages.

[phone beeps]

[woman] [over phone]
Just now,

I don't have too long to talk,

but if you get
this message soon,

give me a call back. Okay.

[water bubbling]

[♪♪♪♪♪]

[man] [on video]
Smile, Mallory!

Happy birthday, Mal.

Can I interview you?

How do you feel about
your birthday party?

[on video] Good.

[man] [on video]
You having a good time?

-[on video] Yeah.
-And how does it feel

-to be three years old?
-[on video] Good.

[Mallory] [voice-over]
When I was three,

my mom was pregnant
with her third child.

I was pushing
to name her Chomperina

after my favorite character
inThe Land Before Time.

But one day, my mom told us

that Chomperina wouldn't
be coming to live with us.

Her doctors had told her
to terminate the pregnancy.

My would-be younger sister
had cystic fibrosis,

the number one
genetic killer of children

in the United States.

[woman] [on video] Okay.
One, two, three. Blow.

[Mallory] [voice-over] The
doctors said it wouldn't be fair

to bring a child
into this world,

knowing that it would suffer

and probably die
within a few years.

The next day, I was tested
for cystic fibrosis.

[Mark] We were just
walking into a party

to celebrate the birth
of a friend's son.

And the pager went off,
because I had a pager,

and it said, it was 911,
and it was a Cedars number,

and I was like,
"Oh-oh, what's this?"

So we went upstairs
into the bedroom and,

and called
the genetic counselor.

At first she said,
"We got the blood results back,

and Micah
is perfectly all right,

but Mallory
has cystic fibrosis."

I remember vividly
noises coming out of my body.

I literally
was about to pass out.

They had to carry me
out of there.

Oh, I felt like my,

my daughter had just got
a death sentence.

[on video] Since you are
our close friends,

you know what this past year
has been like for us.

It started when
Dr. Ruth Cousineau,

who's here tonight
and the best OB there is,

sent me to Dr. Larry Platt
for a routine amnio.

He noticed a small spot
he called an echogenic bowel,

which was eventually diagnosed
as cystic fibrosis.

Everyone said I should
terminate, period.

It was almost easy
because all I heard was

what a terrible and deadly
disease CF was.

But two weeks later,
when Mallory was diagnosed,

I was told to be positive.

CF wasn't the disease
it used to be.

Gene therapy
would provide a cure.

Mallory could live a long life.

How was I to reconcile
these contrasting pictures?

[coughs]

[Mallory] My mom actually wrote

a children's book about me,
about cystic fibrosis,

called Mallory's 65 Roses.

And it's called that
because a lot of kids

can't pronounce
"cystic fibrosis"

and they pronounce it
"65 roses".

We were looking for a resource

to explain to the kids,
to Mallory, to Micah,

to her friends at school,
to our friends.

[Mallory] So the book
does a really good job

of explaining it.

They basically say with CF,
you have thick, sticky mucus

that builds up in your lungs
and digestive tract.

There's a defect in the system

that interferes with the ability
for salt to move around.

And as a result,
sticky mucus develops

any place that you have mucus.

So your sinuses,
your pancreas, your lungs.

And she,
they make the comparison

to having your shoe
get stuck in gum

and you can't get it off.

The bacteria that other people

cough on you
or that you pick up in the air

goes into your system,

and healthy lungs
and healthy people flush it out.

But those with CF
have that extra stickiness,

the bacteria gets stuck there.

And over time, those repeated
infections destroy the lungs.

[Micah] Yeah, when I was a kid,

I didn't realize
quite how serious it was.

And I knew she was sick.

I saw the hospitalizations
and the treatments.

But I didn't know
that it was fatal

until much older in my life.

And I think I was kind
of shielded from that

for a long time.

[♪♪♪♪♪]

[Mallory] [voice-over]
When I was born,

the life expectancy
was only 18 years old.

[Mark]
Uh, that was the median,

you know,
so things could happen,

and you could die younger,
maybe even much younger.

[Mallory] [voice-over]
CF isn't a disease

that you can forget about
until you get sick.

Its armies gain on me
with each passing year.

[Diane] Anybody that lives

with cystic fibrosis
knows that at some point,

the lungs are going to give out,

and the only option
is transplant.

So it's something
that you grow up with,

knowing someday
you might need a transplant.

The one thing
that her first CF doctor said

that I'll never forget

is that we would dance
at Mallory's wedding

because they expected
to have a cure

by the time she was an adult.

[lively chattering]

[Dr. Pornchai]
When I first met her,

she was around nine years old,

and she's healthy.

I met Mallory in about 2015,

and she was about
22 years old at that time.

And she moved back
to Los Angeles,

um, after finishing up college.

Yeah, when I first
met Mallory and,

and her mother, Diane, um,

I was really struck
by their level of insight.

They had clearly
knew the landscape,

they knew the situation
they were in.

[Mallory] [voice-over]
People with CF,

when we get sick
and end up in the hospital,

it's like our wings are broken
and in need of repair.

When we ultimately
do get back out

and get to fly again,

it might be lower and slower
than others,

but we're gonna relish
the feeling of soaring.

[Mallory coughing]

It's hard to see the children
who struggle with breathing.

Take a straw
and put it in your mouth

and then plug your nose
and try to jog in place

and see what that feels like.

[Mallory] [voice-over]
How often is it that people

walk down the street,

take a deep breath and think,

"Wow, that is amazing
that I can do that."

Whenever I'm healthy enough
to take a deep breath

without it hurting
or making me cough,

it amazes me beyond belief.

The stuff
I ask my patients to do

is so difficult.

You have to do
these aggressive treatments

to your lungs every day,
and you have to take

upwards of sometimes
20 to 30 pills a day

just to be able
to eat something,

you know, just to be able
to digest your food.

[Diane] [on video] You want to
show me your hula dance, guys?

-[Micah] [on video] Yeah!
-[Mallory] When I was three,

when I was diagnosed,

I started doing hours
of chest percussion therapy

and breathing treatments
every day.

[Mark] For the first year,
that was my job,

percussion therapy.

And I sat with her
for 24 minutes every morning

and pounded
on her chest and back

in eight different postures.

And then I would come home
in the evening

and do the same therapy
at five or six o'clock at night,

and then I would go back
to the office to work.

[Diane] And I refused

for the first year
to do any treatments.

She would cry and I said,
"I'm not doing it.

I'm not doing it.
I'm not doing it."

I felt like a child beater.

Because if you don't hit
the child hard enough,

you don't dislodge the mucus.

She would cry
during the treatments

and say, "Daddy, stop.
Please stop.

It's too hard."

The big breakthrough was
this vest to shake your lungs.

[device humming]

[Mark] [on video] Hi, Mallory.

[voice shaking] [on video] Hi.

[Mark] [on video] Can you
explain what the two parts

of the treatment are, please?

[voice shaking]
[on video] What two parts?

[Mark] [on video]
The two machines.

[voice shaking] [on video]
This one's the mask.

And this one's the vest.

[Mark] [on video] And, and
what's that big machine there?

[voice shaking]
[on video] This is my vest.

[Mark] [on video]
That's the vest machine?

-[on video] Yeah.
-[Mark] And how often do you

have to
do your treatment, honey?

[voice shaking]
[on video] Two times a day.

[Mark] [on video] Really?

-Do you like it?
-[on video] No.

[Mark] [on video] Why don't
you like it, sweetheart?

[voice shaking]
[on video] It hurts.

[Micah] You know,
it was always what we were told

was just like if Mallory
does these treatments

that she'll be healthy.

And so I thought that
"Oh, she's so great

about doing her treatments

that she's always
going to be healthy."

So seeing the,
the treatments didn't cause

the same kind
of emotional reaction for me.

She always had to be
doing her treatments

in the living room, um,

and she would always
pick the movie.

Um, there's a lot of times
I spent

watching the same movies
over and over again

until we memorized every line.

[water splashing]

[kids shouting in glee]

[Mallory] [voice-over]
It was 1998 in Maui.

Before this trip,
I was always too scared

to put my head underwater
in the ocean.

That day, Micah asked,
"Will you come with us?"

My dad convinced me
to put my head underwater

with him and Micah
for the first time.

From the first wave
I dove under,

the underwater world
felt like someplace

I was meant to be,
a place I needed to be.

I'd dive down to the bottom

and grip onto the sand
with all my six-year-old might

and stay just long enough
to hear the whales.

And then I'd emerge
coughing and sputtering

and blowing the saltwater
out my nose.

[gentle piano notes]

And when we got out of the water

two hours later,
my parents noticed something

I wasn't even conscious of
at the time,

that I was coughing
more than usual,

a rattling, wet cough.

But by the end of the trip,

after being out
in the really deep every day,

I wasn't coughing at all.
I was symptom-free.

We didn't understand why
at the time,

but we kept going back

because there was something
about being there

that just seemed
to make me healthy.

[Micah] That was always
very much like a reset.

Kind of just time
to rest and relax

and help Mallory
get back to health.

[gentle piano music]

[Diane] The first time
we took Mallory to Hawaii,

I think she was three years old,
although I went

when I was pregnant with her.

So her first official trip was
when I was pregnant with her.

But as soon as we landed,
all of a sudden,

she wasn't coughing,

her nose wasn't running,

and she just seemed healthier,
and she felt better,

and her breathing
was less labored.

[Mallory] [voice-over]
In the early 1990s,

researchers figured out that
surfers in Australia with CF

lived 10 years longer
than other patients.

They discovered that saltwater
actually hydrates

the thick sticky mucus
in the lungs

we spend hours a day
trying to get out,

which makes it easier to keep
the lungs clear of infection.

Surfing and being in the ocean

is the number one thing that
separates me from my disease

and makes me feel
like it's not present.

[Mark] [on video]
I think your mask is over.

Can you show me how you
take it off and turn it off?

[device humming]

Is this your last treatment
in Hawaii?

[voice shaking] [on video] Yeah.

[Mark] [on video] Did you have
the best trip ever?

-[on video] No.
-[Mark] [on video] Why?

[voice shaking] [on video]
Because...

[Mark] [on video] Look at,
look at, look at me

when you're talking, honey.

[on video] Because I like
doing hula dances

and I didn't get to do hula.

[Hawaiian-style music playing]

Every playdate
started with treatment,

and it was oftentimes
mostly at her house.

And we would sit there
while she did it.

[Talia] Yeah. I was never
allowed to watch TV as a kid.

But Mallory could always
watch TV during treatments.

So I would love
going over there.

[Mallory] Having a disease

that limits my ability
to socialize in certain ways,

I ended up ultimately with a
much stronger group of friends

because they're the friends
that I know are there

when I'm in the ICU
and can't get out of bed.

And they're there when we're
playing volleyball for hours

and surfing
and having a great time.

I think all of us,

whenever we would go over,
it was something different.

We didn't really understand
what it was,

so we would always be curious.

I did try on the vest, yeah.
And I thought it was really fun.

And I remember
saying that to her

and she would say, you know,
"No, it's not fun."

[Mark] She would often
have a friend over

while she was doing it.

And if you're talking,
you're not breathing deep,

so that she wouldn't
get the medicine

and we would have
to scold her for that.

You know, when you come home
after a really long day,

the last thing you want to do
is do treatment.

[Mallory] [voice-over] I used to
complain to my parents

about having CF.

[on video] Why do I even
have to do this?

When she was nine,
she came home one day,

and she said she wasn't
going to do treatment anymore.

And announced her intention
not to ever do it again.

[Mallory] [voice-over]
And stomp my feet and say,

"It's not fair.
I don't deserve this.

Why do I have to deal with this?
It's too hard."

And Diane worked her over.

[Diane]
I called Mark and I said,

"Mark, I've tried
bribing her, cajoling.

Everything under the sun,
and she won't do it."

I couldn't get her to budge.

[Mallory] [voice-over]
It's not fair. It's too hard.

[Diane] I asked him
to come home from work.

And he said to her, "Mallory.

We're not asking you
to do the treatment

so that you'll feel better.

We're asking you
to do the treatment

so you don't get sick and die.

And if you don't do them,
you will get sick and die."

And she burst into tears,
leapt up from the table,

and went into her room,
and slammed the door.

Twice.

And didn't speak to us
for three days.

For her to have even had one day

of that sort of negative emotion
kills me.

And she asked me years later,

well, did I have to be
so brutally honest?

And I told her that sometimes
honesty is the only arrow

you have left in your quiver.

[Diane] That's when she started

writing in a diary
for the first time.

And that's, um, when I think
she really began to understand.

[Mallory] [voice-over] The
sinking and undeniable reality

of my mortality.

Null and void. Erased and gone.

[pencil scratching]

My mantra was "No pity party."

I really had an attitude
and kept the tone in the house

that we live for the moment.

There was never, ever
one time, a conversation

about her life being cut short.

She would sometimes bring it up
and I would figure a way

to not go there, to that dark,
negative place.

Diane was very aware
of the prognosis.

There were times
when I would call her

and sense in her voice

something was wrong,
and just go over.

It was just she, she.

she was open with
what was going on with Mallory,

because it was a concern.

And I think she understood
the nature of a village

in helping but not open with,

with what it cost her,
personally.

[♪♪♪♪♪]

[keyboard keys clicking]

[Mallory] [voice-over]
It was 2004 in Los Angeles.

It was the day before I was
set to start seventh grade.

And my lung function
was 90 percent.

My mom's phone rang.

"Hello?" she said.

She was silent
for a little while.

I know her many faces
well enough

that I knew something was
really, really wrong.

Finally, she said,
"Are you absolutely sure?

What does this mean?
Should we come right now?"

She said,
"Mal, that was Dr. Pornchai.

Your sputum culture results
came back. You have..."

And she just looked at me
because she can't say it.

We were both silent
as we got in the car

and drove to the hospital.

[Diane] That hospitalization,

they told us
that she had cepacia.

The doctor at the time
was Dr. Pornchai.

[Mallory] [voice-over]
In a low voice

and his thick Thai accent,
he said, "Mallory."

[Dr. Pornchai]
I told her, "Mallory,

this is not a good germ,

uh, it's the germ that we never
want any CF patient to have."

He said,
"This is a major step down

and her, her, her life
is going to get much harder,

and her treatments are going
to become more rigorous."

[Mallory] [voice-over]
I really had never seen her

react this way to any piece
of news about anything.

At that time, uh, I don't know

what it's going to be,
how it's going to be,

but we just have
to monitor her closely.

[Mallory] [voice-over]
A lot of whispering took place

while I slept,
tossing and turning,

coughing with a force
and depth I hadn't known before.

[coughing]

We found out that day

that I was colonized with
Burkholderia cenocepacia,

otherwise known as B. cepacia.

It's the deadliest strain

of the deadliest bacterial
infection known to CF lungs.

[Mark] B. cepacia is
found in onion skins,

so all of us are exposed to it
all the time.

But it doesn't,

it doesn't affect you if
your immune system is healthy.

It's very dangerous
for burn victims

and dangerous
for cystic fibrosis patients.

It's harder
for patients with B. cepacia

to be treated each time

because this germ is
very resistant to antibiotics.

[Mallory] [voice-over]
I had just returned home

a couple of weeks before
from summer camp.

At camp,
in between making friends

and having the time of my life,
I skimped on treatments.

I invited friends to hang out
with me while I did them

and talked throughout
the entire thing,

something my mom
would never allow at home.

And she has lost weight.

[Mallory] [voice-over]
I ate so little

that I lost nine pounds
in one month from a frame

my doctors were already trying
to fatten up constantly.

We knew that her life
was going to be much harder

and shorter.

[Mallory] [voice-over]
How could they explain

to an 11-year-old child

that the trajectory
of her entire future has changed

because of one virulent
and highly resistant pathogen,

that her health could rapidly
deteriorate at any time,

that she could never be around
other patients with CF

because of the danger

of transmitting the infection
to them.

I didn't know
I'd have to be hospitalized

multiple weeks a year,
or that I'd have to rotate

through rounds
of powerful IV antibiotics

that I'd be resistant to
but use anyway

because there were
no other options.

I didn't know at the time

it meant I might not be able
to get a lung transplant.

That once I reached
end-stage disease,

I wouldn't get
the second chance at life

I'd always expected
and taken for granted.

[heart monitor beeping]

[Mark] When Mallory
was still in a crib,

I used to climb
into the crib with her

and read a book
until she fell asleep.

And then one time,
Diane came in,

and I was sound asleep
in her crib,

and Mallory was still
sitting up turning the pages,

[chuckling]
looking at the pictures.

I think she was maybe
two years old then, so.

When she was in the hospital,

I slept overnight at the
hospital with her every night.

All throughout her childhood
and, and school years.

[song playing]

[Uncle Danny]
When I think about Mark,

there's this engine
that's trying to figure out,

what can we do? What can we do?

What can we do?
And this very sad father.

[song playing]

[Mark] [voice-over]
I read a lot.

I kept up on research
into cystic fibrosis.

And at the time,
they were very hopeful

that gene therapy
would produce a cure soon,

within a matter
of, say, five years.

This was a hope that all
cystic fibrosis parents

at the time had,
and it was a false hope.

[keyboard keys clicking]

[Gaby]
The amount of research he does,

something would come out
and he'd be on top of it.

Mark and Diane,
they are very, very involved.

They know everything
and they ask every question

that you, you could,
could imagine.

[Mark]
Mallory's case wasn't something

that you could treat with,
with textbook remedies.

It did, it really did require

thinking out of the box.

[Diane] [voice-over] Mark
really did all the research

and knew
all the technical stuff.

I was social, medical
appointments, fundraising.

The question with Diane is,
where does Diane

find the strength
to do anything that Diane does?

I mean, she just has
boundless energy.

I think it's a combination
of boundless energy,

and, frankly, a complete
unwillingness to deal

with anything that's sad
that propels that forward,

and so she just
powers through it.

[on video] Don't worry,
I'm not gonna sing.

-[laughter]
-[on video] Come here.

She started doing
the fundraisers.

And they'd started
Mallory's Gardenevery year.

[Diane] When she was three,

she was into patent leather
shoes and party dresses.

But when I came to understand
that it was all about sports,

I threw away her party shoes,
took away all the dresses,

and made her into a tomboy,

so she didn't really have
much choice.

I mean, you know, the ship
reflects its captain, right?

And I was like, "This is what
it's going to be about.

Getting that mucus
out of your lungs,

however we have to do it."

[Diane] [on video] Yeah. Yeah.

I'm just showing the feast
that we have. Ugh.

[woman] [on video]
Thank you, Diane.

I was never a cook.
I hated to cook.

But I understood early on

that nutrition was critically
important as a form of medicine.

And so I made it my mission
to cook and make sure

she was always eating.

Diane would always be the one
to text me to hang out

and not Mallory.

That's what she did with
everybody in Mallory's life.

She brought them in

and brought them
into her life as well.

I did things that enabled her

to be more engaged
in her day-to-day life.

You're expected to clean

your nebulizer,
sterilize your gear,

prep your medicine boxes
with the pills,

schedule your appointments,

fight
with the insurance company,

pick up the meds,
go to the doctor's appointments,

go to all the ancillary
appointments

for all the other specialists.

How can one person do
what she does,

but I mean, she does enough
for three people.

Her MO is just to go, go, go
and squeeze, you know,

every minute out of life.

[Mark] [on video] Video is on.
Let's go, Mallory, let's go.

Yoo-hoo.

-Smile, one, two, three.
-[camera clicks]

[on video] One, two, three.
Let me try another one.

-One, two, three.
-One, two, three.

So she was kind of
like Mallory's life admin

and also mother and also,
like caretaker all in one.

Um, and also,
all of our friends joke

that she is,
we call her the "wingmom."

And she would just
shamelessly try to pick up,

in a non-creepy way,
but pick up men

for like Mallory
or her friends to date.

Yes. Well, one of the things
that I felt was really important

was that my kids talk to me
about boys and girls.

And so, way before
she ever would have been

interested in boys,
I started talking about it.

And I would say, "CBA."

And then the girls would say,
"What's that?"

And then I'd say,
"Cute boy alert."

And then they would just
all giggle and turn bright red.

[Gaby] When you're out,
and you're 16,

and you're eating lunch
with your friends,

and then the mom is like,
"Cute boy alert,

cute boy alert,"
it's so embarrassing.

It's, it's an insane thing
to do.

[Mallory and Gaby] [on video]
♪ Oh, Garrett

♪ Oh, Garrett
You're gorgeous ♪

[laughing]

[Gaby]
She did all of that before me.

The first kiss, first boyfriend.

[Mark]
I was never troubled by that.

I, I always wanted Mallory
to experience

all of the joys of life,
in, including love and romance.

And I was happy for her.

She, she picked
really good boyfriends.

She had, she had a number
of very, very nice boyfriends.

Mallory was
the first friend from home

that I came out to,

and it immediately went
from like,

"I have to tell you
a big secret"

to it's just a normal, everyday,

best friend conversation
around, you know,

"How are you going to date?"

[Gaby]
Boys liked her

because she wouldn't
sweat the small stuff.

She had this kind of
bigger picture

that takes us a lot of years
to understand that mentality,

that the little things
shouldn't get us riled up.

[Mallory] I don't feel that I'm

as easily bothered
by daily irritations.

And I think
that's in part because

I've had life and death things
to worry about.

Um. but on the other hand,

I don't think
that I'm unbreakable,

and I definitely feel like
my body is fragile,

even if my spirit
is very strong.

Mallory did such a great job

of kind of separating
her treatments

and her hospital visits from
her lived experience in school

and she was, she kind of set up,

set a bar so high for herself

in terms of academic performance

and athletic performance
that I think her teachers and,

to some extent
her friends kind of

held her to that bar.

[Diane] I was worried about
what she was really thinking.

She was so perfect,
the perfect student,

perfect friend,
perfect daughter.

Perfect everything.

I knew that she had been writing

because she was always
writing on that computer.

But because I hadn't
ever seen it,

I didn't know what was in there.

And I used to
try to break into it,

but I could never ever.

[Mallory] [voice-over]
"But you look so healthy."

They see tall, they see strong,

they see clear eyes
and freckles and long hair.

People seek denial, reassurance,
and safety in my appearance.

They see a "picture of health,"
as they say.

A student, a friend,
a volleyball player,

a swimmer, a girl who laughs
when something is funny

and can carry a conversation,
and proves her stability

with a thoroughly kempt
and normal exterior.

But looks are deceiving.

[Mallory coughing]

[ocean rumbling]

Most days,
she looked pretty healthy.

You know,
she'd go to swim practice,

she'd go to volleyball practice.

Um, you know, she would do
all those things.

But then, you know,
when she got sick,

she was really sick,

and she was in the hospital
for two weeks.

I met Mallory when, uh.

so I coached Micah,
her older brother.

So when Micah was a freshman,
Mallory, I think,

was in seventh grade,
maybe eighth grade.

Pretty much every sport
she played, she,

she took to pretty quickly,
you know.

She's tall, she was,

I mean, when she was a freshman,
she wasn't six foot

but by the time she graduated,
she was six foot.

She's, you know, lean,
and you know, had a good arm.

When someone first told me,

"Oh, you know,
Mallory has cystic fibrosis,"

I, I thought, "Oh, that's just
kind of a nuisance disease."

I had no idea it was,
it was deadly.

And she didn't,
she didn't put that out either.

Once Diane called me kind
of in a panic, I was at school,

and she said,
"Hey, Mallory's sick.

Can you go find her for me?"

She's on the front lawn
at Beverly.

She had coughed up blood.

Hemoptysis is when
you cough up blood

and it can be very mild,
a little bit,

and it can be massive,
which they count

as 250 CCs of blood
in a 24-hour period.

So I went looking for her.

She'd coughed into the,
into the grass

and there was a spot of blood
in the grass.

[girls chanting]

[Mallory] When I'm sick,

when there's a boom
in the cenocepacia population

in my lungs, I lash out.
Not me but my lungs.

They have to do something to
get the infectious agents out.

They have to rebel,

or the airways
that still function

will go the way
of their brethren

and blacken, deaden, fail.

So the airways rupture and
there's an outpouring of blood,

bright fire-engine red,
sticky blood

that spills up my throat
like a waterfall,

traveling inexplicably
against gravity.

It explodes up
like an erupting volcano

and everyone else
gets to run away,

except I can't.

Because I am the volcano.

-[beeps]
-[Mallory coughing]

[Diane] [on video] Oh, my Lord.

[Mallory] Maybe more.

[Mallory coughing]

[man] [on video] Cough it up.

[Mallory coughing]

[Mallory spits]

[heart monitor beeping]

[Mallory]
It was the spring

of my senior year of high school

and my lung function
was down to 60 percent

from my then-baseline
of 75 percent.

I was also 15 pounds
underweight.

A few months
of disordered eating

was enough to give
my B. cepacia infection

the upper hand,

and permanently alter
the trajectory of my health.

High school
was really the first time

that I got to experience Mallory

going from being
extremely healthy, you know,

healthy-seeming one day
and, you know,

killing it in a,
in a water polo game

or a volleyball game,

and then she would
throw up blood

and then be out for three weeks.

[Mallory]
I was in the hospital

for a triple-threat cocktail
of IV antibiotics,

four chest percussion
treatments a day,

and 2,000 calories
of pure milky fat

pumped into my veins daily
through my central line.

I'd been battling my B. cepacia
for six years at this point.

And that day, I was losing.

[Mark]
One of the things that happens

with B. cepacia
in cystic fibrosis lungs

is it develops
antibacterial resistance.

After every antibiotic,
three of them, four of them,

her lung function is nothing.

I was to tell Diane
and also Mallory

that the germ is very resistant

to almost all antibiotics
at that time.

And remember, there's only
one and a half antibiotic

that was sensitive
to this B. cepacia.

[Mallory]
I woke up on my eighth day

in the hospital
to a knock on the door.

It was Dr. Pornchai.

He said, "Mallory, your weight
has dropped yet again today,

and your white blood count
has climbed to 19,000."

Dr. Pornchai was running out
of ideas for what to do.

And so, I did bronchoscopy
to try to clean her lung, get,

get the secretion
out of her lungs

as much as I could.

[Mallory]
As I recovered from anesthesia,

my body started shaking
violently and erratically

as my temperature
rocketed to 106 degrees.

I had sepsis,
an infection in my blood,

and the infection in my lungs
was taking over.

It was wreaking havoc
on my body.

We didn't know if we could
fight it any longer.

She was not doing that well.

She has had a fever,
high fever, and...

[Mallory]
I struggled against five nurses

as they held
my convulsing limbs down

and covered me with ice packs
and cold towels.

We thought I had something
called cepacia syndrome,

which is when people
who are infected

with the bacteria B. cepacia

begin to go into a period
of rapid decline,

a progressive pneumonia

that usually leads to death
within weeks.

[heart monitor beeping]

[Dr. Pornchai]
At that time, I just,

we, we did everything,
but I, I told the family

that this B. cepacia

is the germ
that could, could kill Mallory.

[heart monitor beeping]

[Mallory] It took a few more
weeks in the hospital,

and a few months
of home IV antibiotics.

But eventually, my fever broke.

[cheers and applause]

[on video] [coughs]
We are reminded

of how ephemeral life is and
of how quickly it all rushes by.

This is the first day
of the rest of our lives.

The first day
in which we get to decide

what we want for ourselves,
and how we are going to get it.

Take advantage of the freedom
you have earned

and use it wisely.

[graduates cheering]

[♪♪♪♪♪]

[Diane] I was very nervous.
I didn't want her to go.

Mark was very much in favor
of her going to Stanford.

He thought it was
the right school for her,

and I called my brother,

and I knew that he was there
and that helped.

But was it my first choice?

No.

No, I would have kept her
10 minutes away at UCLA.

[Mallory] My freshman year,

I was on a clinical trial drug
that was amazing.

Um, it kept my lung function
very stable,

and I was actually not
hospitalized for 16 months,

which was the longest
that I had been

without a hospitalization
since I was 10.

[Tyler] I was actually her RA.

Right off the bat,
we became friends,

and Diane was obviously
buzzing around as well.

And one of the first things
that Diane was looking for

when she came to the dorm

was just like a closet
to store medical equipment.

She kind of found me.

We just found like a,

basically a broom closet
and emptied it out,

gave her the key.

[Mallory]
I took over all of the aspects

of my own health care,
managing my prescriptions,

talking to insurance,

making my own
doctor's appointments,

going to the doctor alone,

going to the ER alone,
all that kind of stuff.

Um, and so it was
a very abrupt switch

from pediatric care
to adult care,

but I was very ready for it,
and I liked having that,

that level of control.

You know, it's just
my good fortune

I got assigned her
as a frosh advisee.

I remember being struck by it.

You know, you get a letter
that they wrote.

It cracked me up.

It was, "I'm hoping
to live abroad.

I speak Spanish

but I'm also very interested
in New Zealand.

I think that I want to do
something in the environment."

As I was reading further in it,
it mentioned very briefly

that she also had
cystic fibrosis.

And I mean,
I remember this literally,

I thought,
"I guess I misunderstood

what cystic fibrosis is."

They wanted to put her
in a single room.

She said, "No."

Mallory wanted to have
people in our room a lot, um,

and so we kept our door open.
People would come in and out.

[on video] You're listening
to Green Grid Radio

on KZSU Stanford 90.1 FM.

[Mallory] [voice-over]
We would go to yoga.

We went to brunch a lot.
We went to parties.

It was a pretty typical
college experience.

She just wanted to
not be defined by her illness.

[Charlotte]
I think Mallory was aware

of wasting time, and diligent
about not wasting time.

And that applied
to almost everything she did.

She did it full throttle.

She burned very bright.

I used to tell her, "I wish
you didn't burn so bright,

because bright bulbs
burn out faster."

[Prof. McConnell]
I met Mallory when she was

just starting
her sophomore year.

Stanford has a program
called Sophomore College

where I teach a course
on conservation photography.

[Diane] She applied to
and was accepted to a program

that sent her
to school a month before.

And she didn't want me
to take her up.

She wanted to do it on her own.
And I argued with her

and ultimately
let her win that argument.

[Prof. McConnell] Many students
sort of go through

a journey of discovery,
which is exciting.

But at the same time,
they're doing that

in the context of academically
really intense courses.

[Diane] She landed,
they hit the ground running

with the program, and never
set up her room properly.

Never got a chance to do
all of her treatments.

Hi, Mom.

[Mark] So this is
her new dorm room.

-Hey, can I have--?
-This is my...

-that's my desk over there.
-[girl 1] Hi.

[girl 2] Hi.

[Mark] Okay,
let's go in the bedroom.

[Mallory]
Yeah, this is the bedroom.

Very messy.

-Which one's yours, by the way?
- This one.

-[Mark] Oh, the blue one.
-[Mallory chuckles]

Anything else you want to say?

That's it.

Can you tell
your mom how you miss her?

-I miss you, Mom.
-[Mark laughs]

[Diane] I got a phone call.

She had had a massive bout
of hemoptysis.

She ended up in the hospital.
I immediately flew up.

You only had
two treatments yesterday.

You went 12 hours,
nine hours without a treatment.

-Doesn't affect my lungs.
-You didn't sleep.

-That doesn't affect it.
-[Diane] I don't agree.

[Mallory] Mom,
it's not your lungs.

-How would you have any idea?
-[Diane] Sweetheart.

-I think you...
-You've asked the doctors

-[Diane] Let me just say...
-[Mallory] Just listen to me.

You've asked them
time and time again,

"Will skipping one treatment
affect her lung function?"

-And they said no.
-But you didn't skip one.

You skipped a few this week
and you slept at Danny's...

-I skipped only one this week.
-[Diane] No.

I'm telling you you're wrong,
and you need to listen to me

because it's my body, it's my
lungs, I know what's going on.

[Diane]
Mallory's doctors thought

this exacerbation had been
caused by ataluren.

They pulled her from the trial.
It was heartbreaking.

When they took her off the drug,

she got much worse, and then
she never really recovered.

[Mallory] [voice-over] I woke up
every morning in a fog.

[coughs] Every day, I lost
a little bit more hope.

And every day, I started
to change my perception

of my own self
a little bit more.

Going from a healthy, dynamic,

outgoing, competent young person

to a sickly person
with no hope, no dreams.

Seeing her in a hospital bed
the first few times was jarring.

I had never spent
that much time in a hospital.

It was like, "Wow, she's like
in the hospital for a long time,

she's staying overnight, um,

she's hooked up
to all these things."

[Mallory] [voice-over]
I had pulmonary embolisms.

I had gallstones.
I was coughing up blood.

Everything seemed to be
out of my control,

and I didn't know what to do.

I remember there was
one period of time

when she had, uh,
an IV that she had,

she took with her
everywhere she went,

and she called it, I think
she called it "Sexy Pete."

She just had a good spirit
about everything.

She just,
she always seemed happy.

[Maya] One of the things
that she really brought to us

was positivity and light.

She wanted still
to be the person

who her friends were going to

about their comparatively
minuscule problems.

And I think that I took that
at face value too much.

I just feel like
I didn't ask enough questions,

or I didn't push enough, um,

to really understand
how she was feeling.

She was always smiling,
and she never let anybody

really know
how much she suffered.

She, you know,
took out her opinions

and her feelings
on her journal clearly,

and then tried
to just live a happy life

and pretend
that everything was okay.

[Mallory]
I feel like it's very difficult

for people to understand
what's really going on

and how every single decision
that I make

has a life-or-death
significance to it.

Um, and that's something
that I don't want to convey

because I don't want people
looking at me,

and pitying me or being scared
that I'm going to drop dead

or some, anything like that.

Mallory and I met
at Stanford Hospital.

We were rooming in the rooms
next to each other.

Stanford was like,
a lot of times, my first home

because I was there
more than I was at home.

One of the respiratory
therapists said,

"There's this girl
that's in the room next to you,

and she's around the same age.

And if you want, I'll ask her
if she wants to meet you."

And then after that,
Mallory Facebooked me

and we started talking
on Facebook.

It was very virtual. [chuckles]

[Dr. Eshaghian] We isolate
cystic fibrosis patients

from each other,
and recommend that they don't

stay within six feet
of each other.

I think that's part of what
makes this disease so isolating

when you're living with it.

You know, there's no summer camp
for kids with CF

like there is
for kids with diabetes,

because they could
cough on each other

and transmit bacteria
into each other's lungs.

I definitely think that I can

talk to people
with cystic fibrosis

in a way that I can't
talk to other people.

People with cystic fibrosis can
talk very bluntly to each other.

[phone text notification]

[Caleigh] And then,
with cystic fibrosis,

my experience has been like
you're talking

and then the people
just start to not talk

as often to you,
and start to not answer.

And, um, it's because
people get too sick,

and they can't keep up,

and then it's like
radio silence.

[Mallory]
There's a lot of grieving.

There's grieving for all of
the friends that I have with CF,

for the things
that they're going through,

whether they're dying,

or whether they're
getting transplants,

or whether they're
waiting for a transplant

or just getting sicker.

Cystic fibrosis really isn't
an individual disease.

Um, it's a family
and community disease

in the sense
that when you're sick,

your family aches.

When you're sick,
your friends ache,

and the web kind of goes on.

[Mallory] [voice-over]
It's very difficult for me

to see other people suffering.

It's easier for me
to feel like I'm suffering

than to see other people
that I care about suffering.

I'd been in the hospital
five times,

just that school year.

It seemed like every
organ system of my body

had suffered abuse.

I was in a really dark place

and for the first time,

I was diagnosed with depression.

[keyboard keys clicking]

[Mallory] [voice-over] I think
we have all these second chances

and can always get to our dreams
like a phoenix,

venerable and beautiful

and always rising
above the odds.

A burning bird turning into ash
and then regenerating.

And I always have this feeling

that other people
get to live that way

with their own bodies.

They'll pull foot
342 all-nighters in college,

eat trash, drink booze,
and stress always

and live like they're
going to die young.

But that's exactly
what they're not doing.

And like nothing they do now
is going to change that.

And for most of them,
they're probably right.

I don't sleep tonight.

I'm in the hospital
two days later.

And I'm never gaining it back,

and next year, when I can't walk
up a flight of stairs anymore,

I'm cursing myself and saying...

What if I just..."

I'm a bird and my choices
might lead me to burn

but I don't get
to rise up untainted,

ever glorious, flying freely.

[somber music]

It was 2012 in May,
my sophomore year of college.

My lung function was 50 percent.

One day in the middle
of this Maui trip,

I woke up
and everything felt heavy.

My body felt heavy,
my head felt heavy,

my heart felt heavy.

Driving to the beach,

I had a hard time
looking at the sun.

The day was too bright,
the sky too blue.

When I got there,
I went straight for the ocean

and submerged underwater,

trying to hold my breath
as long as I could,

so I could stay there

because it was the only place
where the pieces of myself

came close to coming back
together again.

I was thinking about mortality

and disease progression
and acceleration.

And I felt helpless
and vulnerable and broken.

I started to cry underwater,
and the salty tears

were mingling
with the saltwater of the ocean,

and everything was clear
and blue and quiet,

and I was completely alone.

[water bubbling]

But then I wasn't.

This honu,
this green sea turtle swam up.

And I was probably
imagining this,

but it felt like
it was looking at me.

Not just looking at me,
but really seeing me.

And I looked back at this
creature with its brown shell

and its cracked skin
and its large, dark eyes.

And I'm not a very spiritual
person generally,

but I thought to myself

that it had come along
at that moment for a reason.

My soul felt endangered
at the time

by the threats to my body.

And that turtle made me see
that I did have the strength

to ride through the turbulence
of my disease with grace.

[crickets chirping]

[Micah] I think
she came to accepting

the reality of like,
what she was,

the hand that she was
dealt in life,

and I think she really
made it her mission not to,

not to let it prevent her from,
you know,

living a normal life
like whatever way she could.

[♪♪♪♪♪]

[Mallory] [voice-over]
Mallory Smith is a student

at Stanford
with an unusual past.

She's going
to tell you two stories

that don't seem to have anything
to do with each other.

But be patient.

She'll walk you through
a story of DNA and destruction,

colonization, and conservation
of the body and the biome.

[Prof. McConnell] She enrolled
in a year-long program,

and it's called
the Senior Reflection.

She wanted to take
her own experiences with CF,

her own sense of stewardship
over her own body,

and make a parallel
with our stewardship

for the planet
and for conservation.

It was clear that she's someone
who thinks through writing

and then when she read
those works in her podcast,

hearing her voice bring
all those words to life

was just incredibly moving.

[Mallory] [voice-over]
My lungs are an ecosystem

forever altered,
but the stakes are clear.

If I don't step up,

this fragile island
that is my body

will drown under the rising sea
of green mucus and disappear.

Null and void, erased and gone.

The Hawaiian Islands
have experienced abuse

and destruction
from the tallest mountain peak

to the deepest part
of the ocean.

But for many people
who care about Hawaii,

there's never been more hope,
more promise, more empowerment.

Many native
and local communities

are rallying to fight
for the future health

of the islands.

♪ Don't go away from me

[Mallory] [voice-over]
Even though I live today,

in objectively worse
health standing than ever

with a lung function
of about 40 percent,

I've never felt more hopeful,
more resilient, more empowered.

I never asked to have CF

or to be colonized
with B. cepacia.

It's not my fault that both
my parents were carriers

of a cystic fibrosis

transmembrane
regulator mutation,

and that I was blessed
to get both recessive alleles.

But that doesn't absolve me
of the responsibility

to fight this disease.

Fight it with everything I have
every day.

I didn't ask for illness,
but I own it

because if I don't,
no one else will.

♪ But remember no news
Is good news ♪

♪ And the good news is
I love you ♪

[Diane] [on video]
Are you cooking?

-[on video] Is this a video?
-[Diane] [on video] Yeah.

[on video] I'm cooking food
and I'm eating it too.

[Diane] [on video] Whooh.

[Mallory] Salmon, some salad,
a lot of ricey carbs.

[Diane] [on video] Ricey carbs.

If I had heard from somebody

that right after college,
I'd be living in LA,

I would have said, "No way."
Um, but here I am.

She really wanted
to go to Hawaii.

That was her plan.

And because of the hemoptysis,
they said, "No."

Then she thought,
"I can't live in Hawaii,

but I can live
in Manhattan Beach,

and have a dog." And so she did.

[Mallory] With cystic fibrosis,

you're constantly
toeing the line between...

acceptance and fighting back.

The common wisdom is that
you should always be fighting

and always dream big.

But if you live
like that always,

and you have
a very serious illness,

you're just going to be
disappointed

day after day after day.

And so, I really feel like

it's a balance between
striving for more

and being happy
with what you have.

[Susan Gottlieb]
It was hard to believe

that she was so young and,
and her work ethic was,

I mean, it was just incredible.

[Mallory] I had always
held on to this idea

that I was going to work
in sustainable development,

and I was going to travel.

And then one day,
I just had to accept

that that wasn't a realistic
thing for me to do.

Now, I'm very happy as a writer,

as a freelance writer.

I make my own schedule,

I can write about things
that I'm passionate about.

Because of the water situation
here in California,

I just felt that, you know,
we had to start somewhere.

So I started putting in
drought-tolerant plants.

As I was doing more reading
and researching

on drought-tolerant plants,

I discovered that there was
such a thing as a native plant.

And the more I read
about native plants,

and how important
they are to the wildlife,

I just got mesmerized
by that whole concept.

And then I thought I should
maybe produce a book.

You've probably seen
the picture of her

working with her inhalator
and her, her jacket on.

And she's working on my book
in that picture.

And I just don't know
how many people

would be able to do that.

[Mallory]
I would say that my purpose

is to give something back
within my lifetime.

I used to envision that
in a lot of different ways.

And now, I think that.
you can make a difference

in big and small ways.

And sometimes,
ways that seem small

are actually really big.

When Mallory moved
to Manhattan Beach,

she had a few months
of relative stability

and had a great time
at the beach and was so happy,

the happiest I'd seen her
in a long time.

-[Mallory] Aaah!
-[laughing] Oh.

[Diane] And then,
she started to get sick.

I never knew if,

you know, the next day
I was going to be in the ER,

or in the hospital, or whatever.

For a young person
to be able to do all of that,

and balance life,
a job, is a challenge.

And in the meantime,
if you don't feel well,

um, it's challenging
just to get through your day.

Her lung function was already
in about the 40 percent range,

that's entering into
the moderate to severe, um,

range of lung function.

[Mallory] [voice-over]
[coughs] Healthy people

have thousands of bacteria
species present in the lungs.

It's a diverse microbial
ecosystem that remains healthy

because the diversity of species

means no individual bacteria
can gain too much traction.

But cystic fibrosis
makes this type

of idyllic
polyculture impossible.

Gone are the healthy bacteria

present
in a healthy polyculture.

Now I'm stuck
with a monoculture system

perched atop airways that are
growing increasingly fragile

from the endless assault.

[coughing] To have your lungs
being destroyed from the inside

feels like there's a boulder
sitting on your chest

preventing you
from taking a deep breath.

It feels like there's
little knives stabbing you

in the bases of your lungs
every time you try to breathe

or every time you cough.

You could say it's the,

it's the fear and disappointment
I experience every time

I can no longer do something
I previously thought was easy.

[on video] We just walked a ton.

[Diane] [on video] I know, Mal.
That's really good,

considering you haven't been
out of bed in a week.

[Mallory] [voice-over]
Being short of breath

is almost like a state of mind.

It's hard to focus
on anything else

when you have to focus
every minute on breathing.

[machine thumping]

[coughing]

[Diane] And then
she went through a period

of back-to-back hospitalizations
where they could not get control

over the cepacia,
and ultimately,

UCLA was calling Stanford
to consult,

and Stanford finally
called me and said,

"Time to bring her back."

[Mallory] Last week,
I went to see my doctor

at Stanford, my doctor there

who's really the man
that I trust with my life.

If I were on my deathbed,

I would want him to be
the one making decisions.

He advised that it would be best
if I put my health first

at this point and focused on
spending at least six months

or longer in the Bay Area

so that I could be close
to Stanford Hospital

so that he could sort of regain
some understanding of my,

my situation
and so that I could be close

to the people
who really specialize

in my specific,
complicated issues.

Yeah.

I met Mallory
at a New Year's Eve party

or New Year's Eve pregame
for a party.

I thought she was really cute,
right off the bat.

And at the time,
she was living in LA.

And so, she was
in a different city,

so I kind of wrote her off
in the beginning.

I was like, "I don't
want to do long distance."

And once I found out she moved,

she was moving back
to the Bay Area, you know,

I made sure whenever she was
at the next party

and the mutual group
of friends we had

that I was there to say hello.

When she moved to San Francisco,

I was living in San Francisco.

You know, there were
more things happening

that were changing
her decisions,

as in she was starting to lose
more control over her decisions.

[Talia]
She wasn't able to go out

and do a lot
when she lived here.

It was always just a lot
of activities at their apartment

and it's a small
San Francisco apartment

and you can't fit
that many people in there.

So it just forced us all to get
to know each other a lot better.

That's when she started
being on oxygen a lot more.

It was difficult for her,
but she always

kept a smile on her face
and stayed optimistic.

[Talia] I went to go visit her
at the hospital.

And I have this vivid memory
of asking Mallory

who else was coming to visit her

and she just kind
of coyly was like,

"Oh, this guy
that I met at a party."

And I was trying to get
more information out of her,

but Diane was in the room,

and she didn't really
want to say anything.

What way my pickup line?
[chuckles]

That's a good question.

I think we would both say
that our turning point was

when we sat down on the balcony
of the house party we were at.

And we just talked about life.

You know, I'm not gonna say

that we had this insanely
deep conversation right away.

But it was more
of the superficial things

that we felt comfortable with

in terms of
what brought us happiness.

And we found a lot of
those things were the same.

[upbeat music]

♪ I must confess
When I wear this dress ♪

I'd known about
Mallory's sickness,

um, just from her presence
online.

She was very open
about everything

that she was dealing with.

[vocalizing]

♪ I feel so happy

♪ I'm stuck on you

[Jack] I remember
the optimism we both felt.

just being young, and you know,

having the good fortune
to have a good education,

and figuring out how
to use that in the world.

[vocalizing]

They liked to surf,
they liked the beach,

they were laid-back.

[Uncle Danny] He was obviously
madly in love with Mallory.

She was madly in love with him.

[Gaby] For her to be able
to have conversations about

"Once this happens, we will."

It had her looking forward.

[Jack] There was nothing
standing in our way

between pursuing love.

You know, as long as
Mallory was alive,

she was gonna fight for her life

and for the love that she felt
for the people around her,

and I was gonna fight
for her as well.

So I was coaching
a Junior Olympics

12 and under team and,
[clears throat]

Junior Olympics happened to be

up in the Stanford area
that year.

So I texted her and said,

"Hey, I'm gonna be
up in the Bay Area.

We should meet for lunch."

She said, "Okay, cool.
Let's do that."

And then, by the time
I got up there,

she had been admitted
to the hospital.

So she said, "Well, you can
come visit in the hospital."

So I went there,
and Diane was there.

Dr. Mohabir
had actually been away.

I think something happened
with his sister

and he had been gone.

And we hadn't seen him
in a while

after we had moved
back up for him,

and we were frustrated.

And so, Coach Bowie
came to the room,

and I said to Mallory,

"I'm gonna get him
some food in the cafeteria,

and we'll be back
in five minutes.

Do you want anything?"
and we went to go get him

some French fries.

I was down
in the cafeteria with Diane.

We were getting some food,
and Diane got either a text

or a call from,
from Mallory's doctor.

So we went back up to the room
and the doctor actually said,

"You know,
maybe Rob should leave."

And Diane and Mallory,
"No, no, he's family."

Well, what Dr. Mohabir said

was that the antibiotics
had done all that they could do

and that she'd become
resistant to them.

And he said that if they were
to withdraw the antibiotics,

she wouldn't live a year.

The doctor said that
no one would transplant her,

and she should consider
going on hospice care,

which basically means
just go home and die.

I was crying,
Mallory was crying.

Rob, I think was like
a deer in the headlights

with his French fries
that were smelling the room up.

It's one of those, you know,
visceral memories that you have.

This is the first time
that I saw

both her and Diane
kind of break.

And it was, I mean, it was just,

just got heavy like that.

Uh, so she gave me the news

with, I think, Mohabir
and her mom there and I was,

I was trying to block it out
for the first couple minutes.

And then this,

the doctor and her mom
stepped out to,

to give us some time,
and I completely broke down.

The idea that the center

where she'd been treated
for years and years

wouldn't even evaluate her
or talk to her about it

was very, very, very hurtful
to her.

[Gaby] That's one of the lowest,

I mean, she couldn't
brighten up that time.

A little bit of disbelief.
I mean, you can't.

It was dark.

[somber violin playing]

[birds chirping]

[Diane] [voice-over]
The conversation

with Dr. Mohabir
when he said he didn't think

there was going to be
a transplant

was really difficult.

[Micah] When my sister
was talking about

how the doctors
were telling her that,

you know, they told her
that she should not

even try to get one
and she wouldn't accept that.

You know, I saw my mom,
my parents fighting to get it.

So first of all,
it's important to understand

that Diane and my mom
are extremely close.

Um, and my mom had this line,
she'd say, "I don't do sad."

And I think Diane adopted
the same thing, right?

She just, you know,
her attitude was, I'm not,

you know, no "pity parties".
I don't do sad.

She's just gonna power through

whatever was adversely
impacting her, um. period.

And at that point,
I thought, well,

I'm gonna ask for more help.

And I found another doctor,
and I said,

her name is Dr. Chhatwani,

I said,
"Would you help Dr. Mohabir?

He's not having any luck."

And so, Dr. Chhatwani had
written some personal appeal

in a chat room
for transplant centers.

[Mark] We actively pursued
transplant

even after being,
having discouraging news

and rejections from people.

And UPMC was the one name
that we had always heard

that was willing
to take difficult cases.

[man] One, two, three.

[Dr. Pilewski] Yeah,
so when I first met Mallory,

her lung function
was less than 30 percent.

Among the spectrum of patients
we see for transplant,

she was sick
and really needed it.

So she was facing
transplant or death.

Um, and from the very beginning,

I sensed that there was a lot
of courage on Mallory's part,

that she had a lot
she wanted to live for.

She wasn't done.

-[Diane] [on video] Hi, Mal!
-Hi!

[Diane] [on video]
Here we are on August 13th.

Mallory's about to take a swim

in the manner
that allows her to breathe

since she's using oxygen.
And here we go.

Moving to Pittsburgh
was very traumatic.

My mom had been diagnosed
with end-stage ovarian cancer,

and so Mark made the decision
to stay back to be with Micah

and to take care of my parents.

And I went with Mallory.

Wave to the camera.

I just blocked it out,

because I could not allow myself
to engage in the emotion

that I would feel
if I were to really process

what it was I was doing,

to leave my mom at a time
when she was dying.

I didn't want to leave my dad.

[Mark] [on video]
Dad. Yes, Dad, wave.

[Grandma] [on video] Maybe take
your hat off, sweetheart.

[on video] My hair's not combed.

[Aunt Meryl]
You know, when we got

my mother's diagnosis,
I remember telling my daughter,

and she was, you know,
quiet for a few beats.

And then she said,
"Maybe it's good."

And I said, "Why?"

And she said,
"Because if Mallory dies,

Grandma would lose her mind."

I was terribly lonely.

I didn't socialize very much,
and I talked to them every day.

I went, I went to them
when I could.

What was shocking
about Pittsburgh

was how sick she was,
how different it was.

I mean, everything was so hard.

And I think that was hard
for her, just in itself.

She was tired.

It was a lot of work,
a lot of treatments.

She was on oxygen.

She became
a lot more comfortable

talking about the fact
that she was scared

and just what it meant

if she couldn't get
a lung transplant,

or what it meant if she could,

and what that surgery was gonna
look like and that, you know,

she could die
on the operating table.

I was living in LA.
Um, I was worried for her.

-[Jack] Surprise!
-What!

[Jack] I would come to
visit Mallory once a month.

Oh, my God.

[Jack] I think anyone who goes
through a transplant,

especially
a double lung transplant,

which is harder to get,

the demand for transplants
is much higher than the supply.

Every day, the call could come
from an unknown number

with a Pittsburgh area code
of whether or not

you get to live
another 10 years,

and that was
a surreal mindset to be in.

I think Mallory
said it best is, um,

she tried to get the best
out of life every day.

But some days,
all she could do was persist

and just survive
to live another day.

[Diane] [on video] Hi, Mal.

[on video] Hi.

She was hospitalized
several times

here in Pittsburgh
from acute infections.

And so we were, we were worried

that she wasn't going
to get her opportunity.

You know, she would expire
before a suitable donor

would be, would be available.

[on video] Uh, things seem to be

getting worse instead of better.

I have no flu anymore,

but we think
it's cepacia syndrome

with fevers
and shortness of breath and pain

and symptoms that we cannot
get under control,

and seems like I'm resistant,
to, with the antibiotics.

So, we'll see what happens.

My boyfriend
just left town, Jack,

he went to San Diego,
and I miss him.

That's all.

[Dr. Pilewski] I think
it takes a commitment

to do more than just
what's in the textbooks,

and maybe even more than
what's in the current journals,

and what the FDA
has available to you,

and say, "Well, let's push
the envelope."

I started looking into ways
to get lungs for Mallory

that would avoid
the scarcity problem.

I did some research

and found that there were
some people

working on taking lungs
from pigs.

I was keen on, on that idea

because if pig lungs could be
used for human transplants,

then there wouldn't be
a shortage.

And then, and then
Mallory's lungs

wouldn't have to be
allocated to someone

who didn't have B. cepacia.

I networked
through a friend and,

and got to this professor
at Harvard,

and he wrote back and said
that he didn't think

that the transplantation
from another species

would be ready any time soon,

but that I ought to look
into other possibilities

for clearing the infection,
including phage therapy.

I read about bacteriophages,

which is Greek
for "bacteria-eater."

A researcher in Canada

had successfully eliminated
a B. cepacia infection

in a cystic fibrosis
knockout mouse.

He explained to me

that phages are
naturally occurring organisms,

so therapies based on them
can't really be patented.

So even if it could
save someone's life,

no one can make money on it.

And if no one
can make money on it,

then no one is going to spend
the millions of dollars it takes

to do a double-blind
placebo-controlled trial

meeting FDA standards.

So that was too far away
from the clinic.

-[laughter]
-[woman] [on video] So, Mal.

How do you feel about
potentially getting new lungs?

[Mallory] [on video]
I feel stoked.

-[woman] [on video] Stoked.
-[Mallory] [on video] Stoked.

[woman] [on video]
Diane, how do you feel

about Mallory's new lungs?

We can't see your fingers.

[laughing]

[Gaby] Talia was there.

And they called me,
and they said,

"She just got called
for transplant.

You need to come."
I was like, "Okay."

So I got on a plane immediately.

And they came in at six
in the morning, and they said,

"Okay, we're taking you
down to pre-op."

And I was like, "Oh, shit."

By seven, we're down there,
and they tell us, you know,

"They're good lungs,
but someone else got 'em."

[Jack] I got in in time
for the doctor to tell us

that no, they were going to
someone else.

We were mortified
because nobody had told us

that Mallory was a backup,

and we didn't even know
that that was actually a thing.

So we all went out
for Mediterranean food

at 11 o'clock in the morning.

And I remember
Mallory saying to me,

"Mom, this meal was amazing.

And if I'd gotten
the transplant,

I would not have had
this delicious meal

with all my friends."

And I realized
that was her secret.

No matter how much shit
was thrown at her,

she was able to rebound
and resurface and move forward.

She just felt
very fortunate despite,

um, the poor hand
she'd been dealt.

She felt betrayed
by being dealt that hand,

but she also felt blessed by
the opportunities that she had.

[man] Okay.
Un momento. Un momento.

[Mallory] Oh, Maria.

[conversation on phone]

Oh, stop, stop.
Okay. What are you--?

Tell her that
she's makin' her cry.

That's not okay.

-We cannot make her cry.
-[man] It's not bad.

No. Tell her
not to make her cry.

This is, this is
the happy time of the night.

The tears, the tears are when
they tell us it's not viable.

[man] Okay.

-Tell her that she has to...
-[man] Okay.

-Tell her I miss her.
-No pity parties.

[Mallory] [crying] It's
definitely a stressful process

to get the call,
have it not go your way,

get another call,
have it not go your way,

get another call,
have it not go your way.

By the time the fourth call
comes around,

it's sort of hard to believe
that it really will happen.

So I think I spent most of
the day in a state of disbelief,

and it's only really now
hitting me

that it actually might happen.

In the five-month period
where I got no calls

in between the first two
dry runs and these,

and then the last one,
it started to just feel like

it was never gonna happen,
and we were just going to be

living in Pittsburgh
for years and years

with no news
on this transplant, so.

-[coughing]
-[background conversation]

[machine beeping]

And then she said
it took four times,

which makes it seem like
it's happening.

-Oh.
-Guys, picture?

-Oh, well.
-Holy shit, Talia.

[Mark] Don't read,
don't read into this.

I'm sorry. I'm reading into
every little everything.

-All right.
-Oh, there's Jack.

-He wants his goodbye.
-Bye.

[Jack] [over phone] Bye, Mal.
Love you tons.

I love you too.
Wish you were here.

[Jack] [over phone] Wish I was
too. Super proud of you.

They will give you updates
as they get them.

Yeah.

Oh, boy.

I'll get in bed, Mark, go
ahead. You can hug her first.

I want the last hug.

[indistinct chattering]

[Mallory] Thank you.

[Talia] Guess I picked
the wrong side.

[laughs]

[Diane] They're just grabbing
an O2 tank.

You're perfect now.

[woman] Thank you.

[Talia]
I knew I saw her in there

-through the years.
-[woman] Okay.

[Talia] That's good.

[Mallory crying]

[Talia] Guess I should
take a picture.

Okay. Perfect.
All right, thank you.

-[heart monitor beeping]
-[muted chatter]

[Doctor] The lungs look okay.
I think it's gonna be fine.

But I want to put 'em
on the machine, okay?

Okay, all right.

[muted chatter]

[machine hissing, beeping]

[Diane] You worry,

"Is my child gonna die
on the table?

Is my child gonna make it
through surgery?"

[Mark] I was, half of me thought

that I might never
see her again.

-[nurse] Okay, Doctor?
-[doctor] Yeah.

-[nurse] We're ready for ya.
-[doctor] All right.

[Mark] Um, half of me
knew that I would.

[nurse] Just hold on the lungs.

[doctor] All right,
so the right lung's out.

[machine beeping]

It's unlike anything
to see your daughter

who was tethered to oxygen
before the surgery

and who you thought wasn't ever
gonna get a transplant

because of the cepacia
be able to sit up

and without oxygen
take this breath.

And it wasn't smooth like...
[breathes deeply]

you know, it was
challenging for her,

but it was really
quite exciting.

[Diane] [on video] You wanna
smile? One, two, three.

-Two, three.
-[woman] [on video] Smile.

[Diane] [on video]
Is she doing well or what?

[woman] [on video] Yeah.

[Mallory] [voice-over]
I feel like people with CF

are privy to secrets
it takes most other people

a lifetime to understand.

[nurse] [on video] Here's
Mallory walking down the hall.

[Mallory]
How lucky we are to be alive.

How lucky anyone is
who has their health.

How we should be appreciative

of anything
that's in our control

since our health
is most often not.

[cheering]

That we can leave behind
a legacy when we go

that will impact others.

That simple things are often
the most beautiful.

That love and happiness

are the most important things
to strive for.

That ultimately,
we shouldn't give a damn

what other people think

because everyone's making
their own way,

and everyone's facing
different struggles

that other people
aren't aware of.

CF has given me my value system
and ultimately,

no matter how hard it is,
I'm grateful for it.

Mallory Smith is getting ready
to celebrate her 25th birthday.

It's just three days away.

That may not sound
extraordinary, but it is.

You see, she believes doctors
here in Pittsburgh

saved her life.

They did. They did.

The doctors there
are just my heroes,

because they took a chance on me
when nobody else would.

[interviewer]
You get emotional about it.

[Mallory] [voice-over]
The pain is temporary

and then you get to live
the rest of your life

with being able to breathe.

Yeah. The big moment for us

was being able
to leave the hospital

and she was still on antibiotics
at that time,

but she no longer needed oxygen.

She was breathing through
a 100 percent viable lungs,

normal person lungs,

and we were able to go
on a walk in the crisp fall air

and watch a local kickball game

between like two
beer-drinking teams.

And [chuckles]
we really enjoyed ourselves,

'cause Mal never got tired.
We never needed to wait.

And our hopes were
at a peak at that time,

'cause we were talking about
plans to move back to LA,

how long that would be,
where she would want to live,

and we were full
of happiness and joy.

♪ Ditch plastic
It's fantastic ♪

I think it was about
a week after her birthday

that she started getting fevers.

And that's a danger sign,

because the fever's a sign
of a bacterial infection.

And the risk
in B. cepacia transplants

is that the B. cepacia
will reinfect the new lungs

'cause of the drugs
that you take

to suppress your immune system
to prevent rejection.

[Dr. Pilewski]
And Mallory unfortunately

developed a pneumonia
from her Burkholderia.

It was necrotizing pneumonia
that was going fast,

and they showed me
the X-ray pictures

of it going up your lungs.

First, when your lungs
are newly transplanted,

it's all black,
the black is good.

And then there's the white film
that starts creeping up.

It's, you don't
want to believe it.

[nurse]
Every single person...

[Jack] I don't think
I was ready to accept that,

especially after the hope
and happiness

that we had just shared
over that last visit together.

I didn't want that to go away.

We hadn't felt that in months,
almost a year.

[Diane] She was on a crazy
complicated round of IVs.

I just wasn't going
to give up hope.

I was working feverishly
to try to find new antibiotics,

and there was one
that was hopeful

that came from Japan

that hadn't been approved
in the United States yet,

but it didn't work.

[Diane] That's when
Mark read an article

about an extraordinary scientist
named Steffanie Strathdee,

who saved her husband from
a superbug using phage therapy.

I reached out to them.
And Steffanie sent out a tweet

to phage researchers
all over the world

trying to find people
who had phages

that were active
against B. cepacia.

And we were successful,
we found two of them.

I never say no to an idea,
unless it's dangerous.

And this clearly
was not dangerous,

saying we're going to take
a bacterial isolate

to try and identify
a novel therapy.

Sure, let's do it.

[phone text notification]

[heart monitor beeping]

[phone text notification]

So there's a process
of identifying a phage

that's active against
the specific bacterium.

And then that phage
has to be grown up

in sufficient quantities to use

and prepared such that
there's not a contaminant.

That process evolved
in Mallory's case

at breakneck speed,

in large part by having
three teams of people

who were really,
really committed to it.

The Navy Biomedical Weapons
facility in Maryland

had been researching that
for a while

for soldiers coming back
from overseas

with these really random
superbugs that no one had seen.

They wanted to treat them.

And also some
Canadian firms that

had been researching phages
academically.

And so,
Mark was able to combine,

along with
Steffanie Strathdee's help,

this global research group
for saving his daughter.

She was definitely
not feeling well.

She was like,
"Sorry I can't talk more."

And then they told her,

"Look, we need to put you
on the respirator."

And that sucked, because,
you know, those were,

those were signs to her
that things were really bad.

That was an incredible time
for, for her and her family

because sort of
on a day-to-day basis,

you'd see these tiny glimpses
of getting better.

Fevers would abate
for a day and a half,

and then fevers would come back.

[Jack] I was on the night watch,
two a.m. to 10 a.m.

And in the middle of the night,
she shook me awake, you know,

and I was like, "Oh,
what's wrong? What's wrong?

You need something like
water, bathroom, nurse?

What's?" You know,
I was ready to fight.

[laughs] And she was like,
"No, I need to write."

And so I got her a pen
and pad of paper.

And she wrote me this note
that read,

"You have so far exceeded
my expectation

of what is possible for love."

It was a beautiful moment,
and of course,

I assured Mallory
that I felt the same way.

I don't believe
that I called people.

I think what I did
was I posted on Facebook,

and I said,
"The doctors have said

that anybody that should be
here should come today."

And 30 people
got on a plane and came.

[heart monitor beeping]

[Uncle Danny] I just remember,
it was kind of a blur.

You know, it was late.

We went into some waiting room.
There was food.

There were people there
all around the table.

Mallory was in her room
down the hall.

[Jack] Things were getting
very scary, um.

but Diane was adamant
that we don't tell her

that she was dying.

And she wanted Mallory
to keep fighting

while we were stalling for time

to get that medicine
created and shipped to us.

[Diane] She knew
that Mark was fighting

for her life,
and she knew that we were

getting her the phage.

And I said to Mallory,

"I'm very grateful
that you allowed Dad to do this

because it's gonna save you,
and hopefully, it's gonna save

hundreds of thousands
of other lives."

[Dr. Pilewski]
The phages were, were prepared

and ready to go

but there were
transportation issues.

And our, our transplant
surgeon, Dr. D'Cunha,

managed to work with his people
who do transportation for organs

and finagle a way
to get the phages

transported here
as expeditiously as possible.

[helicopter whirring]

[man] Is this wild phages?
It is insane.

Come on, phages.

[woman] Oh, my God, I'm crying.
Oh, my God.

That's the batch.

That's nice work.

[man] [on video] All right, Mal.

[woman] [on video]
We are walking the phages

down the hall,

down the wall.
Here we are.

We're walking in.

These are the phages.

[Diane] [on video] Oh, my God.
Can I give you a hug?

Thank you so much.

Yeah, don't drop 'em.

[Diane] [on video]
What do we do?

[man] [on video] Yeah,
I'll hold them for now.

Thank you.[laughs]

[woman] [on video]
Don't drop 'em.

[Mark] The phages
were administered at,

at about six p.m.

One variety was given
into the, the right lung.

and the other one was given
in the left lung.

And then a microdose
was given intravenously.

[machine beeping]

[muted chatter]

We were planning to dose her
with them every 12 hours.

And the next morning,
when they were preparing

the second round of doses
for her,

we had a heart-to-heart
with the doctor who told us

that even if
we pulled Mallory back

from the brink of death here,

her blood oxygen
had been depressed

for so long she would suffer
permanent brain damage.

So I remember
being in the room with Mallory

and Diane came in
and she was teary and saying,

"It's not working.
It's not, it's not,

it's not happening."

[heart monitor beeping]

And it felt like
a knife through the chest.

Yeah, knowing
that we were gonna have to

take her
off life support, and...

I knew that's what she wanted.

[Mark] And we were all
touching Mallory,

holding her hand or feet,
rubbing her feet,

or touching her, her legs.

[sniffling]

And...

We just saw her pulse rate fall

and her respiration rate fall
and her blood pressure fall.

And then about
ten minutes to five, her,

her pulse stopped.

[slow piano notes playing]

[waves lashing]

[birds chirping]

We wanted to see
whether the phages

had reached their targets
and had started to work.

And the autopsy did confirm

that the phages
had already started

killing the B. cepacia germs
and multiplying the phage.

And Mallory's case

and the publicity
that we got for it

have sparked a resurgence
of interest in phage therapy,

especially for
cystic fibrosis patients,

and several dozen patients
have been treated,

and some lives have been saved.

Not all of them.

You know, a lot of them
got it too late, like Mallory.

And I would like to see
that timeframe moved up.

[Dr. Pilewski] We learn
from patients like Mallory

about what
we could do different.

We have, we have
this phage collaborative

going on right now,
encouraged by Mark and Diane.

So those efforts
will hopefully allow us

to get more patients
through the first year or two

after transplant
'cause that's really where

the biggest landmines are.

People get through the first
three, four, or five years

after transplant
without major complications,

most of those patients are
going to live ten, 15, 20 years.

So, that's our hope.

We'll get there.

[inhaling]

[mellow music playing]

[approaching footsteps]

[Diane] [voice-over]
When we moved to Pittsburgh

for the transplant

and she was afraid
she might not make it,

Mallory finally gave me
the password to her journal,

and told me not to read it

if she made it
through transplant,

but that if something
happened to her,

she wanted me to open it,

and there would be
instructions inside.

What I found was 2,500 pages

of her carefully recorded
thoughts over 10 years.

I also discovered
a treasure trove of audio.

She was very happy,
and she chose to live happy,

and that was her mantra.

But at the same time,
I think she suffered immensely,

and I don't think
anybody had any idea

of how deeply she suffered
until I read the journal.

And then I said,
"Wow, I missed this."

Going through a third transplant

during a pandemic like COVID-19
has been incredibly scary.

I was not able to have family
or friends with me at all.

I could only bring a few items
with me to the hospital.

And I chose to bring this book
because I just,

I see it, and I see strength.

And I also knew because
my family wasn't there,

I was gonna need something
to make me feel less lonely,

and that was Mallory's book.

[mellow music]

[keyboard keys clicking]

[Mark]
These are Mallory's words.

"I'm back in the hospital
thinking about what I want.

I want to wake up in the morning

and take a deep, full breath.

I want that breath
to fill me up,

to imbue me with joy and energy,

not to irritate or pain me

and set off a spasm of coughing.

I want to be able to do
the things that I dream of."

"That I dream of while I sleep.

Things that are
taxing in reality.

Hiking, running, biking,
swimming, diving, kicking,

screaming, dancing, laughing,
jumping, falling, leaping,

-soaring."
-[Caleigh] "Soaring.

I want to get to know
another person

without fearing
what they will think

when they truly understand
the way my body works.

I want to trust that my body
will be able to help me,

not hinder me,
in living out my dreams."

"I want to know
that when my closest friends

are sitting on the porch
at age 80,

I'll be sitting there
with them."

"I'll be sitting there
with them,

reminiscing, smiling,

weeping, talking,
drifting, chuckling."

[exhales]
"I want to fall in love.

[sniffles]

and have a relationship
that's reciprocal.

And not have to burden my love
with the task

of taking care of a spouse
who can't pull her own weight,

who's needy."

"I want to have a child
but more than that,

I want to hope to have a child

without the nagging worry that
the dream is entirely foolish.

And when I have this child,

I want to be able
to pick her up,

carry her around."

"Climb trees with her,

play with her in the jungle gym,

teach her how to swim,
dance with her in the kitchen,

show her
the most beautiful hikes,

be there to push her
into her first wave.

and keep up with her
fireball energy of youth."

[Maya] "I want to effect
change in the world.

I want my life goals not
to end as solely surviving.

I want to live largely,
[sniffles]

richly, vastly."

"Dynamically, lovingly,

graciously, eternally,
and ephemerally."

"I want to feel amazement
and wonder every day."

"I want to never lose sight

of my place
in the thread of humanity

and the fabric of the earth."

"In the palace
that is this universe."

"I want friendship,
happiness, humor."

"Laughter, lightheartedness."

"Small conquerable worries."

"To want these things is normal,

to expect them is dangerous."

"Do I have to abandon

my beautiful idea
of what life is?"

"Do I have to abandon
these fantasies

as possibilities for me,

to refashion my idea
of the future?"

"To settle for just surviving,

breath by breath?"

"Breath by breath,
one day at a time,

sacrificing the very idea
of dreams

to prevent disappointment.

Only if I allow disappointment
to crush my spirit.

I am happy today."

[waves lashing the shore]

["The Flower I've Become"
performed by Kalyna Raquel]

♪ When all my hopes seem gone

♪ Your love was always there

♪ I opened up in darkness

♪ And now I breathe the air

♪ You showed me love
Through rain ♪

♪ You showed me love
Through sun ♪

♪ But from the storm
I'm thankful ♪

♪ For the flower I've become

♪ For the flower I've become

♪ Without it Earth would dry

♪ The seed would not survive

♪ And I would never grow

♪ To see the break of light

♪ You showed me love
Through rain ♪

♪ You showed me love
Through sun ♪

♪ But from the storm
I'm thankful ♪

♪ For the flower I've become

♪ For the flower I've become

♪ For the flower I've become

♪ For the flower I've become

♪ The struggle brought me up

♪ And made my roots dig down

♪ And those who see my bloom

♪ See half of
What's in ground ♪

♪ So thank you for the rain

♪ And thank you for the sun