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Downloaded from
YTS.MX

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Official YIFY movies site:
YTS.MX

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[♪♪♪♪♪]

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[keyboard keys clicking]

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[♪♪♪♪♪]

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[kids shouting playfully]

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[Mallory] I'm not necessarily

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the most fearful of death.

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[kids playing]

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[Mallory coughing]

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[Mallory] but I do think

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that when you leave
people behind

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that had fought so hard
to keep you alive

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and that have invested
all of their energy

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for years and years
to keeping you alive

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as long as possible,

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I think that would be
devastating.

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So I think my biggest fear is
that my parents would

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have to deal with my death
instead of the reverse.

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[heart rate monitor beeping]

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[woman] These are the phages.

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[phone beeps]

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[woman] [over phone]
Just now,

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I don't have too long to talk,

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but if you get
this message soon,

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give me a call back. Okay.

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[water bubbling]

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[♪♪♪♪♪]

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[man] [on video]
Smile, Mallory!

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Happy birthday, Mal.

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Can I interview you?

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How do you feel about
your birthday party?

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[on video] Good.

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

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

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

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

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my mom was pregnant
with her third child.

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I was pushing
to name her Chomperina

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after my favorite character
inThe Land Before Time.

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But one day, my mom told us

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

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Her doctors had told her
to terminate the pregnancy.

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My would-be younger sister
had cystic fibrosis,

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the number one
genetic killer of children

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in the United States.

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

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

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to bring a child
into this world,

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knowing that it would suffer

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and probably die
within a few years.

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The next day, I was tested
for cystic fibrosis.

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[Mark] We were just
walking into a party

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to celebrate the birth
of a friend's son.

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

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

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

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So we went upstairs
into the bedroom and,

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and called
the genetic counselor.

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

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and Micah
is perfectly all right,

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but Mallory
has cystic fibrosis."

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I remember vividly
noises coming out of my body.

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I literally
was about to pass out.

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They had to carry me
out of there.

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Oh, I felt like my,

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my daughter had just got
a death sentence.

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[on video] Since you are
our close friends,

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

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It started when
Dr. Ruth Cousineau,

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

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

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He noticed a small spot
he called an echogenic bowel,

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which was eventually diagnosed
as cystic fibrosis.

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Everyone said I should
terminate, period.

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It was almost easy
because all I heard was

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what a terrible and deadly
disease CF was.

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But two weeks later,
when Mallory was diagnosed,

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I was told to be positive.

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CF wasn't the disease
it used to be.

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Gene therapy
would provide a cure.

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Mallory could live a long life.

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How was I to reconcile
these contrasting pictures?

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[coughs]

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[Mallory] My mom actually wrote

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

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called Mallory's 65 Roses.

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And it's called that
because a lot of kids

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can't pronounce
"cystic fibrosis"

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and they pronounce it
"65 roses".

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We were looking for a resource

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

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to her friends at school,
to our friends.

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[Mallory] So the book
does a really good job

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of explaining it.

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

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that builds up in your lungs
and digestive tract.

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There's a defect in the system

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that interferes with the ability
for salt to move around.

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And as a result,
sticky mucus develops

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any place that you have mucus.

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So your sinuses,
your pancreas, your lungs.

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And she,
they make the comparison

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to having your shoe
get stuck in gum

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and you can't get it off.

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The bacteria that other people

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cough on you
or that you pick up in the air

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goes into your system,

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and healthy lungs
and healthy people flush it out.

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But those with CF
have that extra stickiness,

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the bacteria gets stuck there.

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And over time, those repeated
infections destroy the lungs.

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[Micah] Yeah, when I was a kid,

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I didn't realize
quite how serious it was.

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And I knew she was sick.

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I saw the hospitalizations
and the treatments.

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But I didn't know
that it was fatal

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until much older in my life.

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And I think I was kind
of shielded from that

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for a long time.

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[♪♪♪♪♪]

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

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the life expectancy
was only 18 years old.

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[Mark]
Uh, that was the median,

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you know,
so things could happen,

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and you could die younger,
maybe even much younger.

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

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that you can forget about
until you get sick.

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Its armies gain on me
with each passing year.

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[Diane] Anybody that lives

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with cystic fibrosis
knows that at some point,

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the lungs are going to give out,

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and the only option
is transplant.

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So it's something
that you grow up with,

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knowing someday
you might need a transplant.

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The one thing
that her first CF doctor said

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that I'll never forget

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is that we would dance
at Mallory's wedding

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because they expected
to have a cure

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by the time she was an adult.

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[lively chattering]

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[Dr. Pornchai]
When I first met her,

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she was around nine years old,

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and she's healthy.

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I met Mallory in about 2015,

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and she was about
22 years old at that time.

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And she moved back
to Los Angeles,

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um, after finishing up college.

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Yeah, when I first
met Mallory and,

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and her mother, Diane, um,

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I was really struck
by their level of insight.

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They had clearly
knew the landscape,

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they knew the situation
they were in.

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

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when we get sick
and end up in the hospital,

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

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When we ultimately
do get back out

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and get to fly again,

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it might be lower and slower
than others,

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but we're gonna relish
the feeling of soaring.

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[Mallory coughing]

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

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Take a straw
and put it in your mouth

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and then plug your nose
and try to jog in place

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and see what that feels like.

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

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walk down the street,

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take a deep breath and think,

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

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Whenever I'm healthy enough
to take a deep breath

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without it hurting
or making me cough,

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it amazes me beyond belief.

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The stuff
I ask my patients to do

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is so difficult.

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You have to do
these aggressive treatments

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to your lungs every day,
and you have to take

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upwards of sometimes
20 to 30 pills a day

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just to be able
to eat something,

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

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

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

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when I was diagnosed,

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I started doing hours
of chest percussion therapy

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and breathing treatments
every day.

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

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percussion therapy.

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And I sat with her
for 24 minutes every morning

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and pounded
on her chest and back

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in eight different postures.

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And then I would come home
in the evening

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

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

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[Diane] And I refused

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for the first year
to do any treatments.

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

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

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I felt like a child beater.

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

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you don't dislodge the mucus.

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She would cry
during the treatments

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and say, "Daddy, stop.
Please stop.

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It's too hard."

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The big breakthrough was
this vest to shake your lungs.

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[device humming]

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[Mark] [on video] Hi, Mallory.

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[voice shaking] [on video] Hi.

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

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of the treatment are, please?

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

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[Mark] [on video]
The two machines.

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

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And this one's the vest.

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

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

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

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

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have to
do your treatment, honey?

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

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[Mark] [on video] Really?

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

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

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[voice shaking]
[on video] It hurts.

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

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was just like if Mallory
does these treatments

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that she'll be healthy.

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

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about doing her treatments

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that she's always
going to be healthy."

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So seeing the,
the treatments didn't cause

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the same kind
of emotional reaction for me.

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She always had to be
doing her treatments

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in the living room, um,

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and she would always
pick the movie.

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Um, there's a lot of times
I spent

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watching the same movies
over and over again

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until we memorized every line.

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[water splashing]

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[kids shouting in glee]

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

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Before this trip,
I was always too scared

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00:10:40,596 --> 00:10:42,772
to put my head underwater
in the ocean.

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

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My dad convinced me
to put my head underwater

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00:10:48,517 --> 00:10:50,562
with him and Micah
for the first time.

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From the first wave
I dove under,

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the underwater world
felt like someplace

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

248
00:11:06,361 --> 00:11:08,058
I'd dive down to the bottom

249
00:11:08,102 --> 00:11:10,974
and grip onto the sand
with all my six-year-old might

250
00:11:11,018 --> 00:11:13,585
and stay just long enough
to hear the whales.

251
00:11:13,629 --> 00:11:15,718
And then I'd emerge
coughing and sputtering

252
00:11:15,762 --> 00:11:18,765
and blowing the saltwater
out my nose.

253
00:11:18,808 --> 00:11:21,681
[gentle piano notes]

254
00:11:35,129 --> 00:11:36,826
And when we got out of the water

255
00:11:36,870 --> 00:11:38,872
two hours later,
my parents noticed something

256
00:11:38,915 --> 00:11:41,222
I wasn't even conscious of
at the time,

257
00:11:42,484 --> 00:11:44,312
that I was coughing
more than usual,

258
00:11:44,355 --> 00:11:46,314
a rattling, wet cough.

259
00:11:48,098 --> 00:11:49,752
But by the end of the trip,

260
00:11:49,796 --> 00:11:51,841
after being out
in the really deep every day,

261
00:11:51,885 --> 00:11:55,279
I wasn't coughing at all.
I was symptom-free.

262
00:11:55,323 --> 00:11:57,064
We didn't understand why
at the time,

263
00:11:57,107 --> 00:11:58,848
but we kept going back

264
00:11:58,892 --> 00:12:00,763
because there was something
about being there

265
00:12:00,807 --> 00:12:02,765
that just seemed
to make me healthy.

266
00:12:08,162 --> 00:12:10,642
[Micah] That was always
very much like a reset.

267
00:12:10,686 --> 00:12:12,644
Kind of just time
to rest and relax

268
00:12:12,688 --> 00:12:15,038
and help Mallory
get back to health.

269
00:12:17,258 --> 00:12:19,564
[gentle piano music]

270
00:12:27,355 --> 00:12:28,835
[Diane] The first time
we took Mallory to Hawaii,

271
00:12:28,878 --> 00:12:30,314
I think she was three years old,
although I went

272
00:12:30,358 --> 00:12:32,229
when I was pregnant with her.

273
00:12:32,273 --> 00:12:34,666
So her first official trip was
when I was pregnant with her.

274
00:12:34,710 --> 00:12:37,408
But as soon as we landed,
all of a sudden,

275
00:12:37,452 --> 00:12:38,583
she wasn't coughing,

276
00:12:38,627 --> 00:12:40,281
her nose wasn't running,

277
00:12:40,324 --> 00:12:41,717
and she just seemed healthier,
and she felt better,

278
00:12:41,761 --> 00:12:43,763
and her breathing
was less labored.

279
00:12:43,806 --> 00:12:45,765
[Mallory] [voice-over]
In the early 1990s,

280
00:12:45,808 --> 00:12:48,724
researchers figured out that
surfers in Australia with CF

281
00:12:48,768 --> 00:12:51,205
lived 10 years longer
than other patients.

282
00:12:51,727 --> 00:12:54,077
They discovered that saltwater
actually hydrates

283
00:12:54,121 --> 00:12:55,862
the thick sticky mucus
in the lungs

284
00:12:55,905 --> 00:12:58,299
we spend hours a day
trying to get out,

285
00:12:58,342 --> 00:13:01,041
which makes it easier to keep
the lungs clear of infection.

286
00:13:02,172 --> 00:13:04,131
Surfing and being in the ocean

287
00:13:04,174 --> 00:13:07,743
is the number one thing that
separates me from my disease

288
00:13:07,787 --> 00:13:11,616
and makes me feel
like it's not present.

289
00:13:13,314 --> 00:13:15,185
[Mark] [on video]
I think your mask is over.

290
00:13:15,229 --> 00:13:16,578
Can you show me how you
take it off and turn it off?

291
00:13:18,188 --> 00:13:20,495
[device humming]

292
00:13:23,977 --> 00:13:26,022
Is this your last treatment
in Hawaii?

293
00:13:26,631 --> 00:13:28,459
[voice shaking] [on video] Yeah.

294
00:13:28,503 --> 00:13:30,200
[Mark] [on video] Did you have
the best trip ever?

295
00:13:32,594 --> 00:13:35,075
-[on video] No.
-[Mark] [on video] Why?

296
00:13:35,118 --> 00:13:36,859
[voice shaking] [on video]
Because...

297
00:13:36,903 --> 00:13:38,034
[Mark] [on video] Look at,
look at, look at me

298
00:13:38,078 --> 00:13:39,819
when you're talking, honey.

299
00:13:39,862 --> 00:13:41,951
[on video] Because I like
doing hula dances

300
00:13:41,995 --> 00:13:44,432
and I didn't get to do hula.

301
00:13:46,347 --> 00:13:49,132
[Hawaiian-style music playing]

302
00:13:56,270 --> 00:13:58,881
Every playdate
started with treatment,

303
00:13:58,925 --> 00:14:02,929
and it was oftentimes
mostly at her house.

304
00:14:02,972 --> 00:14:04,974
And we would sit there
while she did it.

305
00:14:05,018 --> 00:14:07,194
[Talia] Yeah. I was never
allowed to watch TV as a kid.

306
00:14:07,237 --> 00:14:09,370
But Mallory could always
watch TV during treatments.

307
00:14:09,413 --> 00:14:11,459
So I would love
going over there.

308
00:14:11,502 --> 00:14:13,287
[Mallory] Having a disease

309
00:14:13,330 --> 00:14:17,900
that limits my ability
to socialize in certain ways,

310
00:14:17,944 --> 00:14:22,949
I ended up ultimately with a
much stronger group of friends

311
00:14:22,992 --> 00:14:25,821
because they're the friends
that I know are there

312
00:14:25,865 --> 00:14:28,215
when I'm in the ICU
and can't get out of bed.

313
00:14:28,258 --> 00:14:31,827
And they're there when we're
playing volleyball for hours

314
00:14:31,871 --> 00:14:35,004
and surfing
and having a great time.

315
00:14:35,048 --> 00:14:36,963
I think all of us,

316
00:14:37,006 --> 00:14:38,660
whenever we would go over,
it was something different.

317
00:14:38,703 --> 00:14:39,791
We didn't really understand
what it was,

318
00:14:39,835 --> 00:14:40,880
so we would always be curious.

319
00:14:42,707 --> 00:14:45,493
I did try on the vest, yeah.
And I thought it was really fun.

320
00:14:45,536 --> 00:14:47,147
And I remember
saying that to her

321
00:14:47,190 --> 00:14:49,149
and she would say, you know,
"No, it's not fun."

322
00:14:49,192 --> 00:14:50,759
[Mark] She would often
have a friend over

323
00:14:50,802 --> 00:14:52,413
while she was doing it.

324
00:14:52,456 --> 00:14:53,893
And if you're talking,
you're not breathing deep,

325
00:14:53,936 --> 00:14:55,416
so that she wouldn't
get the medicine

326
00:14:55,459 --> 00:14:57,331
and we would have
to scold her for that.

327
00:14:57,374 --> 00:14:59,724
You know, when you come home
after a really long day,

328
00:14:59,768 --> 00:15:01,378
the last thing you want to do
is do treatment.

329
00:15:03,206 --> 00:15:04,468
[Mallory] [voice-over] I used to
complain to my parents

330
00:15:04,512 --> 00:15:06,122
about having CF.

331
00:15:06,166 --> 00:15:08,298
[on video] Why do I even
have to do this?

332
00:15:08,342 --> 00:15:09,996
When she was nine,
she came home one day,

333
00:15:10,039 --> 00:15:11,780
and she said she wasn't
going to do treatment anymore.

334
00:15:11,823 --> 00:15:15,001
And announced her intention
not to ever do it again.

335
00:15:15,044 --> 00:15:16,567
[Mallory] [voice-over]
And stomp my feet and say,

336
00:15:16,611 --> 00:15:18,221
"It's not fair.
I don't deserve this.

337
00:15:18,265 --> 00:15:20,571
Why do I have to deal with this?
It's too hard."

338
00:15:20,615 --> 00:15:23,487
And Diane worked her over.

339
00:15:23,531 --> 00:15:25,054
[Diane]
I called Mark and I said,

340
00:15:25,098 --> 00:15:26,751
"Mark, I've tried
bribing her, cajoling.

341
00:15:26,795 --> 00:15:28,231
Everything under the sun,
and she won't do it."

342
00:15:28,275 --> 00:15:30,146
I couldn't get her to budge.

343
00:15:30,190 --> 00:15:31,843
[Mallory] [voice-over]
It's not fair. It's too hard.

344
00:15:31,887 --> 00:15:32,975
[Diane] I asked him
to come home from work.

345
00:15:33,019 --> 00:15:34,455
And he said to her, "Mallory.

346
00:15:34,498 --> 00:15:35,543
We're not asking you
to do the treatment

347
00:15:35,586 --> 00:15:36,718
so that you'll feel better.

348
00:15:37,371 --> 00:15:39,112
We're asking you
to do the treatment

349
00:15:39,155 --> 00:15:40,940
so you don't get sick and die.

350
00:15:40,983 --> 00:15:43,464
And if you don't do them,
you will get sick and die."

351
00:15:44,813 --> 00:15:47,947
And she burst into tears,
leapt up from the table,

352
00:15:47,990 --> 00:15:49,513
and went into her room,
and slammed the door.

353
00:15:50,340 --> 00:15:51,994
Twice.

354
00:15:52,038 --> 00:15:54,257
And didn't speak to us
for three days.

355
00:15:54,301 --> 00:15:55,867
For her to have even had one day

356
00:15:55,911 --> 00:15:58,827
of that sort of negative emotion
kills me.

357
00:15:58,870 --> 00:16:00,350
And she asked me years later,

358
00:16:00,394 --> 00:16:02,439
well, did I have to be
so brutally honest?

359
00:16:03,353 --> 00:16:06,878
And I told her that sometimes
honesty is the only arrow

360
00:16:06,922 --> 00:16:08,315
you have left in your quiver.

361
00:16:11,840 --> 00:16:13,233
[Diane] That's when she started

362
00:16:13,276 --> 00:16:15,061
writing in a diary
for the first time.

363
00:16:15,104 --> 00:16:17,889
And that's, um, when I think
she really began to understand.

364
00:16:17,933 --> 00:16:20,153
[Mallory] [voice-over] The
sinking and undeniable reality

365
00:16:20,196 --> 00:16:21,328
of my mortality.

366
00:16:21,371 --> 00:16:23,808
Null and void. Erased and gone.

367
00:16:26,072 --> 00:16:28,422
[pencil scratching]

368
00:16:42,349 --> 00:16:44,046
My mantra was "No pity party."

369
00:16:44,090 --> 00:16:48,746
I really had an attitude
and kept the tone in the house

370
00:16:48,790 --> 00:16:50,400
that we live for the moment.

371
00:16:50,444 --> 00:16:54,013
There was never, ever
one time, a conversation

372
00:16:54,404 --> 00:16:56,624
about her life being cut short.

373
00:16:56,667 --> 00:16:58,626
She would sometimes bring it up
and I would figure a way

374
00:16:58,669 --> 00:17:02,934
to not go there, to that dark,
negative place.

375
00:17:02,978 --> 00:17:04,675
Diane was very aware
of the prognosis.

376
00:17:04,719 --> 00:17:06,851
There were times
when I would call her

377
00:17:06,895 --> 00:17:09,506
and sense in her voice

378
00:17:09,550 --> 00:17:11,073
something was wrong,
and just go over.

379
00:17:11,682 --> 00:17:13,771
It was just she, she.

380
00:17:15,077 --> 00:17:19,168
she was open with
what was going on with Mallory,

381
00:17:19,516 --> 00:17:21,170
because it was a concern.

382
00:17:21,562 --> 00:17:23,825
And I think she understood
the nature of a village

383
00:17:24,956 --> 00:17:27,785
in helping but not open with,

384
00:17:27,829 --> 00:17:31,093
with what it cost her,
personally.

385
00:17:36,098 --> 00:17:38,622
[♪♪♪♪♪]

386
00:17:38,666 --> 00:17:41,408
[keyboard keys clicking]

387
00:17:50,243 --> 00:17:53,420
[Mallory] [voice-over]
It was 2004 in Los Angeles.

388
00:17:53,463 --> 00:17:56,553
It was the day before I was
set to start seventh grade.

389
00:17:56,597 --> 00:17:58,512
And my lung function
was 90 percent.

390
00:18:01,428 --> 00:18:02,994
My mom's phone rang.

391
00:18:04,083 --> 00:18:05,997
"Hello?" she said.

392
00:18:06,041 --> 00:18:07,695
She was silent
for a little while.

393
00:18:09,610 --> 00:18:11,394
I know her many faces
well enough

394
00:18:11,438 --> 00:18:13,918
that I knew something was
really, really wrong.

395
00:18:16,095 --> 00:18:18,575
Finally, she said,
"Are you absolutely sure?

396
00:18:18,619 --> 00:18:21,012
What does this mean?
Should we come right now?"

397
00:18:22,013 --> 00:18:25,539
She said,
"Mal, that was Dr. Pornchai.

398
00:18:25,582 --> 00:18:29,891
Your sputum culture results
came back. You have..."

399
00:18:31,458 --> 00:18:35,766
And she just looked at me
because she can't say it.

400
00:18:37,855 --> 00:18:39,509
We were both silent
as we got in the car

401
00:18:39,553 --> 00:18:40,858
and drove to the hospital.

402
00:18:41,990 --> 00:18:43,296
[Diane] That hospitalization,

403
00:18:43,339 --> 00:18:44,862
they told us
that she had cepacia.

404
00:18:44,906 --> 00:18:47,126
The doctor at the time
was Dr. Pornchai.

405
00:18:47,169 --> 00:18:48,910
[Mallory] [voice-over]
In a low voice

406
00:18:48,953 --> 00:18:50,607
and his thick Thai accent,
he said, "Mallory."

407
00:18:50,651 --> 00:18:52,087
[Dr. Pornchai]
I told her, "Mallory,

408
00:18:52,131 --> 00:18:54,176
this is not a good germ,

409
00:18:54,524 --> 00:18:59,921
uh, it's the germ that we never
want any CF patient to have."

410
00:18:59,964 --> 00:19:02,967
He said,
"This is a major step down

411
00:19:03,011 --> 00:19:06,406
and her, her, her life
is going to get much harder,

412
00:19:06,449 --> 00:19:08,843
and her treatments are going
to become more rigorous."

413
00:19:08,886 --> 00:19:10,671
[Mallory] [voice-over]
I really had never seen her

414
00:19:10,714 --> 00:19:13,108
react this way to any piece
of news about anything.

415
00:19:13,717 --> 00:19:15,980
At that time, uh, I don't know

416
00:19:16,024 --> 00:19:18,505
what it's going to be,
how it's going to be,

417
00:19:18,548 --> 00:19:21,508
but we just have
to monitor her closely.

418
00:19:22,161 --> 00:19:23,553
[Mallory] [voice-over]
A lot of whispering took place

419
00:19:23,597 --> 00:19:25,903
while I slept,
tossing and turning,

420
00:19:25,947 --> 00:19:28,776
coughing with a force
and depth I hadn't known before.

421
00:19:28,819 --> 00:19:30,821
[coughing]

422
00:19:31,213 --> 00:19:33,084
We found out that day

423
00:19:33,128 --> 00:19:35,826
that I was colonized with
Burkholderia cenocepacia,

424
00:19:35,870 --> 00:19:38,133
otherwise known as B. cepacia.

425
00:19:38,829 --> 00:19:40,744
It's the deadliest strain

426
00:19:40,788 --> 00:19:43,530
of the deadliest bacterial
infection known to CF lungs.

427
00:19:44,052 --> 00:19:47,229
[Mark] B. cepacia is
found in onion skins,

428
00:19:48,012 --> 00:19:51,842
so all of us are exposed to it
all the time.

429
00:19:51,886 --> 00:19:53,540
But it doesn't,

430
00:19:53,583 --> 00:19:55,585
it doesn't affect you if
your immune system is healthy.

431
00:19:55,629 --> 00:19:57,805
It's very dangerous
for burn victims

432
00:19:58,284 --> 00:20:02,505
and dangerous
for cystic fibrosis patients.

433
00:20:02,549 --> 00:20:05,900
It's harder
for patients with B. cepacia

434
00:20:05,943 --> 00:20:07,641
to be treated each time

435
00:20:07,684 --> 00:20:12,123
because this germ is
very resistant to antibiotics.

436
00:20:12,646 --> 00:20:14,300
[Mallory] [voice-over]
I had just returned home

437
00:20:14,343 --> 00:20:16,258
a couple of weeks before
from summer camp.

438
00:20:16,302 --> 00:20:18,739
At camp,
in between making friends

439
00:20:18,782 --> 00:20:21,568
and having the time of my life,
I skimped on treatments.

440
00:20:21,611 --> 00:20:23,700
I invited friends to hang out
with me while I did them

441
00:20:23,744 --> 00:20:25,963
and talked throughout
the entire thing,

442
00:20:26,007 --> 00:20:27,704
something my mom
would never allow at home.

443
00:20:27,748 --> 00:20:29,271
And she has lost weight.

444
00:20:29,315 --> 00:20:31,055
[Mallory] [voice-over]
I ate so little

445
00:20:31,099 --> 00:20:32,927
that I lost nine pounds
in one month from a frame

446
00:20:32,970 --> 00:20:35,103
my doctors were already trying
to fatten up constantly.

447
00:20:35,538 --> 00:20:39,238
We knew that her life
was going to be much harder

448
00:20:39,716 --> 00:20:41,022
and shorter.

449
00:20:44,504 --> 00:20:45,635
[Mallory] [voice-over]
How could they explain

450
00:20:45,679 --> 00:20:47,463
to an 11-year-old child

451
00:20:47,507 --> 00:20:49,900
that the trajectory
of her entire future has changed

452
00:20:49,944 --> 00:20:53,252
because of one virulent
and highly resistant pathogen,

453
00:20:53,904 --> 00:20:56,907
that her health could rapidly
deteriorate at any time,

454
00:20:56,951 --> 00:20:59,345
that she could never be around
other patients with CF

455
00:20:59,388 --> 00:21:00,998
because of the danger

456
00:21:01,042 --> 00:21:02,261
of transmitting the infection
to them.

457
00:21:03,784 --> 00:21:05,351
I didn't know
I'd have to be hospitalized

458
00:21:05,394 --> 00:21:07,744
multiple weeks a year,
or that I'd have to rotate

459
00:21:07,788 --> 00:21:09,746
through rounds
of powerful IV antibiotics

460
00:21:09,790 --> 00:21:11,922
that I'd be resistant to
but use anyway

461
00:21:11,966 --> 00:21:13,489
because there were
no other options.

462
00:21:13,794 --> 00:21:15,709
I didn't know at the time

463
00:21:15,752 --> 00:21:17,885
it meant I might not be able
to get a lung transplant.

464
00:21:18,277 --> 00:21:20,322
That once I reached
end-stage disease,

465
00:21:20,366 --> 00:21:22,019
I wouldn't get
the second chance at life

466
00:21:22,063 --> 00:21:24,457
I'd always expected
and taken for granted.

467
00:21:24,500 --> 00:21:27,329
[heart monitor beeping]

468
00:21:30,550 --> 00:21:32,465
[Mark] When Mallory
was still in a crib,

469
00:21:32,508 --> 00:21:34,858
I used to climb
into the crib with her

470
00:21:34,902 --> 00:21:37,296
and read a book
until she fell asleep.

471
00:21:37,861 --> 00:21:40,211
And then one time,
Diane came in,

472
00:21:40,255 --> 00:21:43,171
and I was sound asleep
in her crib,

473
00:21:43,650 --> 00:21:46,653
and Mallory was still
sitting up turning the pages,

474
00:21:46,696 --> 00:21:48,219
[chuckling]
looking at the pictures.

475
00:21:48,263 --> 00:21:51,614
I think she was maybe
two years old then, so.

476
00:21:52,180 --> 00:21:54,704
When she was in the hospital,

477
00:21:54,748 --> 00:21:58,142
I slept overnight at the
hospital with her every night.

478
00:21:58,621 --> 00:22:02,538
All throughout her childhood
and, and school years.

479
00:22:02,582 --> 00:22:07,674
[song playing]

480
00:22:10,416 --> 00:22:12,026
[Uncle Danny]
When I think about Mark,

481
00:22:12,069 --> 00:22:14,463
there's this engine
that's trying to figure out,

482
00:22:14,507 --> 00:22:15,943
what can we do? What can we do?

483
00:22:15,986 --> 00:22:20,382
What can we do?
And this very sad father.

484
00:22:20,426 --> 00:22:22,515
[song playing]

485
00:22:22,558 --> 00:22:24,299
[Mark] [voice-over]
I read a lot.

486
00:22:24,343 --> 00:22:26,519
I kept up on research
into cystic fibrosis.

487
00:22:26,562 --> 00:22:28,738
And at the time,
they were very hopeful

488
00:22:29,086 --> 00:22:33,917
that gene therapy
would produce a cure soon,

489
00:22:34,265 --> 00:22:37,007
within a matter
of, say, five years.

490
00:22:37,617 --> 00:22:41,360
This was a hope that all
cystic fibrosis parents

491
00:22:41,403 --> 00:22:44,319
at the time had,
and it was a false hope.

492
00:22:46,060 --> 00:22:48,105
[keyboard keys clicking]

493
00:22:48,149 --> 00:22:50,064
[Gaby]
The amount of research he does,

494
00:22:50,107 --> 00:22:52,893
something would come out
and he'd be on top of it.

495
00:22:52,936 --> 00:22:56,766
Mark and Diane,
they are very, very involved.

496
00:22:56,810 --> 00:22:59,639
They know everything
and they ask every question

497
00:22:59,682 --> 00:23:03,077
that you, you could,
could imagine.

498
00:23:03,120 --> 00:23:04,948
[Mark]
Mallory's case wasn't something

499
00:23:04,992 --> 00:23:09,866
that you could treat with,
with textbook remedies.

500
00:23:09,910 --> 00:23:12,391
It did, it really did require

501
00:23:12,434 --> 00:23:14,262
thinking out of the box.

502
00:23:15,698 --> 00:23:17,787
[Diane] [voice-over] Mark
really did all the research

503
00:23:17,831 --> 00:23:19,485
and knew
all the technical stuff.

504
00:23:20,224 --> 00:23:23,837
I was social, medical
appointments, fundraising.

505
00:23:23,880 --> 00:23:25,447
The question with Diane is,
where does Diane

506
00:23:25,491 --> 00:23:27,144
find the strength
to do anything that Diane does?

507
00:23:27,188 --> 00:23:30,713
I mean, she just has
boundless energy.

508
00:23:30,757 --> 00:23:32,280
I think it's a combination
of boundless energy,

509
00:23:32,323 --> 00:23:33,890
and, frankly, a complete
unwillingness to deal

510
00:23:33,934 --> 00:23:36,502
with anything that's sad
that propels that forward,

511
00:23:36,545 --> 00:23:39,113
and so she just
powers through it.

512
00:23:39,635 --> 00:23:41,071
[on video] Don't worry,
I'm not gonna sing.

513
00:23:41,115 --> 00:23:42,508
-[laughter]
-[on video] Come here.

514
00:23:42,551 --> 00:23:44,466
She started doing
the fundraisers.

515
00:23:44,510 --> 00:23:47,600
And they'd started
Mallory's Gardenevery year.

516
00:23:48,688 --> 00:23:50,559
[Diane] When she was three,

517
00:23:50,603 --> 00:23:53,170
she was into patent leather
shoes and party dresses.

518
00:23:53,606 --> 00:23:55,825
But when I came to understand
that it was all about sports,

519
00:23:55,869 --> 00:23:57,740
I threw away her party shoes,
took away all the dresses,

520
00:23:57,784 --> 00:23:59,394
and made her into a tomboy,

521
00:23:59,438 --> 00:24:01,178
so she didn't really have
much choice.

522
00:24:01,222 --> 00:24:03,137
I mean, you know, the ship
reflects its captain, right?

523
00:24:03,180 --> 00:24:05,139
And I was like, "This is what
it's going to be about.

524
00:24:05,182 --> 00:24:06,445
Getting that mucus
out of your lungs,

525
00:24:06,488 --> 00:24:07,968
however we have to do it."

526
00:24:09,535 --> 00:24:11,275
[Diane] [on video] Yeah. Yeah.

527
00:24:11,319 --> 00:24:13,452
I'm just showing the feast
that we have. Ugh.

528
00:24:13,495 --> 00:24:14,844
[woman] [on video]
Thank you, Diane.

529
00:24:14,888 --> 00:24:16,193
I was never a cook.
I hated to cook.

530
00:24:16,237 --> 00:24:18,065
But I understood early on

531
00:24:18,108 --> 00:24:20,284
that nutrition was critically
important as a form of medicine.

532
00:24:20,328 --> 00:24:22,896
And so I made it my mission
to cook and make sure

533
00:24:22,939 --> 00:24:24,114
she was always eating.

534
00:24:26,073 --> 00:24:28,423
Diane would always be the one
to text me to hang out

535
00:24:28,467 --> 00:24:30,077
and not Mallory.

536
00:24:30,120 --> 00:24:32,471
That's what she did with
everybody in Mallory's life.

537
00:24:32,514 --> 00:24:34,342
She brought them in

538
00:24:34,385 --> 00:24:36,779
and brought them
into her life as well.

539
00:24:36,823 --> 00:24:38,868
I did things that enabled her

540
00:24:38,912 --> 00:24:41,436
to be more engaged
in her day-to-day life.

541
00:24:41,480 --> 00:24:43,438
You're expected to clean

542
00:24:43,482 --> 00:24:45,266
your nebulizer,
sterilize your gear,

543
00:24:45,309 --> 00:24:47,877
prep your medicine boxes
with the pills,

544
00:24:47,921 --> 00:24:49,444
schedule your appointments,

545
00:24:49,488 --> 00:24:51,228
fight
with the insurance company,

546
00:24:51,272 --> 00:24:52,708
pick up the meds,
go to the doctor's appointments,

547
00:24:52,752 --> 00:24:53,840
go to all the ancillary
appointments

548
00:24:53,883 --> 00:24:55,232
for all the other specialists.

549
00:24:56,582 --> 00:24:59,236
How can one person do
what she does,

550
00:24:59,280 --> 00:25:01,674
but I mean, she does enough
for three people.

551
00:25:01,717 --> 00:25:05,373
Her MO is just to go, go, go
and squeeze, you know,

552
00:25:05,416 --> 00:25:07,418
every minute out of life.

553
00:25:07,462 --> 00:25:09,812
[Mark] [on video] Video is on.
Let's go, Mallory, let's go.

554
00:25:09,856 --> 00:25:11,422
Yoo-hoo.

555
00:25:11,466 --> 00:25:13,250
-Smile, one, two, three.
-[camera clicks]

556
00:25:13,294 --> 00:25:15,252
[on video] One, two, three.
Let me try another one.

557
00:25:15,296 --> 00:25:17,559
-One, two, three.
-One, two, three.

558
00:25:17,603 --> 00:25:19,779
So she was kind of
like Mallory's life admin

559
00:25:19,822 --> 00:25:25,306
and also mother and also,
like caretaker all in one.

560
00:25:25,349 --> 00:25:28,048
Um, and also,
all of our friends joke

561
00:25:28,091 --> 00:25:30,485
that she is,
we call her the "wingmom."

562
00:25:30,529 --> 00:25:34,576
And she would just
shamelessly try to pick up,

563
00:25:34,620 --> 00:25:37,100
in a non-creepy way,
but pick up men

564
00:25:37,144 --> 00:25:40,669
for like Mallory
or her friends to date.

565
00:25:41,888 --> 00:25:45,021
Yes. Well, one of the things
that I felt was really important

566
00:25:45,065 --> 00:25:47,763
was that my kids talk to me
about boys and girls.

567
00:25:47,807 --> 00:25:49,591
And so, way before
she ever would have been

568
00:25:49,635 --> 00:25:51,550
interested in boys,
I started talking about it.

569
00:25:51,593 --> 00:25:53,508
And I would say, "CBA."

570
00:25:53,552 --> 00:25:55,249
And then the girls would say,
"What's that?"

571
00:25:55,292 --> 00:25:56,990
And then I'd say,
"Cute boy alert."

572
00:25:57,033 --> 00:25:58,992
And then they would just
all giggle and turn bright red.

573
00:25:59,035 --> 00:26:01,690
[Gaby] When you're out,
and you're 16,

574
00:26:01,734 --> 00:26:04,780
and you're eating lunch
with your friends,

575
00:26:04,824 --> 00:26:06,652
and then the mom is like,
"Cute boy alert,

576
00:26:06,695 --> 00:26:09,089
cute boy alert,"
it's so embarrassing.

577
00:26:09,132 --> 00:26:12,309
It's, it's an insane thing
to do.

578
00:26:12,353 --> 00:26:13,876
[Mallory and Gaby] [on video]
♪ Oh, Garrett

579
00:26:13,920 --> 00:26:15,835
♪ Oh, Garrett
You're gorgeous ♪

580
00:26:15,878 --> 00:26:18,228
[laughing]

581
00:26:18,272 --> 00:26:19,665
[Gaby]
She did all of that before me.

582
00:26:19,708 --> 00:26:21,928
The first kiss, first boyfriend.

583
00:26:21,971 --> 00:26:24,191
[Mark]
I was never troubled by that.

584
00:26:24,234 --> 00:26:27,890
I, I always wanted Mallory
to experience

585
00:26:28,630 --> 00:26:32,678
all of the joys of life,
in, including love and romance.

586
00:26:32,939 --> 00:26:34,810
And I was happy for her.

587
00:26:34,854 --> 00:26:37,813
She, she picked
really good boyfriends.

588
00:26:37,857 --> 00:26:40,729
She had, she had a number
of very, very nice boyfriends.

589
00:26:42,252 --> 00:26:44,080
Mallory was
the first friend from home

590
00:26:44,124 --> 00:26:45,516
that I came out to,

591
00:26:45,560 --> 00:26:46,866
and it immediately went
from like,

592
00:26:46,909 --> 00:26:47,954
"I have to tell you
a big secret"

593
00:26:47,997 --> 00:26:49,956
to it's just a normal, everyday,

594
00:26:49,999 --> 00:26:52,480
best friend conversation
around, you know,

595
00:26:52,523 --> 00:26:54,134
"How are you going to date?"

596
00:26:55,962 --> 00:26:57,572
[Gaby]
Boys liked her

597
00:26:57,616 --> 00:26:59,661
because she wouldn't
sweat the small stuff.

598
00:26:59,705 --> 00:27:01,707
She had this kind of
bigger picture

599
00:27:01,750 --> 00:27:06,059
that takes us a lot of years
to understand that mentality,

600
00:27:06,102 --> 00:27:09,889
that the little things
shouldn't get us riled up.

601
00:27:10,193 --> 00:27:11,804
[Mallory] I don't feel that I'm

602
00:27:11,847 --> 00:27:15,982
as easily bothered
by daily irritations.

603
00:27:16,025 --> 00:27:18,637
And I think
that's in part because

604
00:27:19,681 --> 00:27:22,902
I've had life and death things
to worry about.

605
00:27:22,945 --> 00:27:26,862
Um. but on the other hand,

606
00:27:26,906 --> 00:27:29,038
I don't think
that I'm unbreakable,

607
00:27:29,082 --> 00:27:33,086
and I definitely feel like
my body is fragile,

608
00:27:33,129 --> 00:27:35,001
even if my spirit
is very strong.

609
00:27:35,828 --> 00:27:37,525
Mallory did such a great job

610
00:27:37,568 --> 00:27:40,006
of kind of separating
her treatments

611
00:27:40,049 --> 00:27:43,879
and her hospital visits from
her lived experience in school

612
00:27:43,923 --> 00:27:46,490
and she was, she kind of set up,

613
00:27:46,534 --> 00:27:48,492
set a bar so high for herself

614
00:27:48,536 --> 00:27:50,799
in terms of academic performance

615
00:27:50,843 --> 00:27:52,758
and athletic performance
that I think her teachers and,

616
00:27:52,801 --> 00:27:53,976
to some extent
her friends kind of

617
00:27:54,020 --> 00:27:55,804
held her to that bar.

618
00:27:56,065 --> 00:27:57,937
[Diane] I was worried about
what she was really thinking.

619
00:27:57,980 --> 00:28:01,070
She was so perfect,
the perfect student,

620
00:28:01,114 --> 00:28:03,464
perfect friend,
perfect daughter.

621
00:28:03,507 --> 00:28:04,726
Perfect everything.

622
00:28:04,770 --> 00:28:06,467
I knew that she had been writing

623
00:28:06,510 --> 00:28:08,512
because she was always
writing on that computer.

624
00:28:08,556 --> 00:28:10,732
But because I hadn't
ever seen it,

625
00:28:10,776 --> 00:28:12,429
I didn't know what was in there.

626
00:28:12,473 --> 00:28:13,648
And I used to
try to break into it,

627
00:28:13,692 --> 00:28:15,606
but I could never ever.

628
00:28:17,260 --> 00:28:19,175
[Mallory] [voice-over]
"But you look so healthy."

629
00:28:19,828 --> 00:28:21,743
They see tall, they see strong,

630
00:28:21,787 --> 00:28:24,572
they see clear eyes
and freckles and long hair.

631
00:28:25,051 --> 00:28:28,794
People seek denial, reassurance,
and safety in my appearance.

632
00:28:28,837 --> 00:28:30,883
They see a "picture of health,"
as they say.

633
00:28:30,926 --> 00:28:32,798
A student, a friend,
a volleyball player,

634
00:28:32,841 --> 00:28:35,714
a swimmer, a girl who laughs
when something is funny

635
00:28:35,757 --> 00:28:38,499
and can carry a conversation,
and proves her stability

636
00:28:38,542 --> 00:28:41,110
with a thoroughly kempt
and normal exterior.

637
00:28:41,937 --> 00:28:43,417
But looks are deceiving.

638
00:28:46,768 --> 00:28:48,552
[Mallory coughing]

639
00:28:49,205 --> 00:28:51,164
[ocean rumbling]

640
00:28:51,947 --> 00:28:53,862
Most days,
she looked pretty healthy.

641
00:28:53,906 --> 00:28:55,646
You know,
she'd go to swim practice,

642
00:28:55,690 --> 00:28:57,213
she'd go to volleyball practice.

643
00:28:57,257 --> 00:28:59,302
Um, you know, she would do
all those things.

644
00:28:59,346 --> 00:29:00,477
But then, you know,
when she got sick,

645
00:29:00,521 --> 00:29:01,914
she was really sick,

646
00:29:01,957 --> 00:29:03,132
and she was in the hospital
for two weeks.

647
00:29:03,785 --> 00:29:05,918
I met Mallory when, uh.

648
00:29:05,961 --> 00:29:07,702
so I coached Micah,
her older brother.

649
00:29:07,746 --> 00:29:09,486
So when Micah was a freshman,
Mallory, I think,

650
00:29:09,530 --> 00:29:12,663
was in seventh grade,
maybe eighth grade.

651
00:29:12,707 --> 00:29:14,274
Pretty much every sport
she played, she,

652
00:29:14,317 --> 00:29:15,275
she took to pretty quickly,
you know.

653
00:29:15,318 --> 00:29:16,929
She's tall, she was,

654
00:29:16,972 --> 00:29:18,669
I mean, when she was a freshman,
she wasn't six foot

655
00:29:18,713 --> 00:29:20,323
but by the time she graduated,
she was six foot.

656
00:29:20,367 --> 00:29:22,978
She's, you know, lean,
and you know, had a good arm.

657
00:29:23,674 --> 00:29:25,285
When someone first told me,

658
00:29:25,328 --> 00:29:27,156
"Oh, you know,
Mallory has cystic fibrosis,"

659
00:29:27,200 --> 00:29:29,332
I, I thought, "Oh, that's just
kind of a nuisance disease."

660
00:29:29,376 --> 00:29:31,770
I had no idea it was,
it was deadly.

661
00:29:31,813 --> 00:29:33,728
And she didn't,
she didn't put that out either.

662
00:29:34,860 --> 00:29:38,559
Once Diane called me kind
of in a panic, I was at school,

663
00:29:38,602 --> 00:29:39,865
and she said,
"Hey, Mallory's sick.

664
00:29:39,908 --> 00:29:41,997
Can you go find her for me?"

665
00:29:42,041 --> 00:29:43,694
She's on the front lawn
at Beverly.

666
00:29:43,738 --> 00:29:45,958
She had coughed up blood.

667
00:29:46,001 --> 00:29:49,178
Hemoptysis is when
you cough up blood

668
00:29:49,222 --> 00:29:51,311
and it can be very mild,
a little bit,

669
00:29:51,354 --> 00:29:54,096
and it can be massive,
which they count

670
00:29:54,140 --> 00:29:57,796
as 250 CCs of blood
in a 24-hour period.

671
00:29:57,839 --> 00:29:59,058
So I went looking for her.

672
00:29:59,101 --> 00:30:00,929
She'd coughed into the,
into the grass

673
00:30:00,973 --> 00:30:03,671
and there was a spot of blood
in the grass.

674
00:30:03,714 --> 00:30:05,847
[girls chanting]

675
00:30:08,894 --> 00:30:10,765
[Mallory] When I'm sick,

676
00:30:10,809 --> 00:30:12,593
when there's a boom
in the cenocepacia population

677
00:30:12,636 --> 00:30:15,857
in my lungs, I lash out.
Not me but my lungs.

678
00:30:15,901 --> 00:30:19,469
They have to do something to
get the infectious agents out.

679
00:30:19,513 --> 00:30:20,906
They have to rebel,

680
00:30:20,949 --> 00:30:22,385
or the airways
that still function

681
00:30:22,429 --> 00:30:23,517
will go the way
of their brethren

682
00:30:23,560 --> 00:30:25,388
and blacken, deaden, fail.

683
00:30:26,389 --> 00:30:29,001
So the airways rupture and
there's an outpouring of blood,

684
00:30:29,044 --> 00:30:31,307
bright fire-engine red,
sticky blood

685
00:30:31,351 --> 00:30:33,440
that spills up my throat
like a waterfall,

686
00:30:33,483 --> 00:30:36,312
traveling inexplicably
against gravity.

687
00:30:36,356 --> 00:30:38,445
It explodes up
like an erupting volcano

688
00:30:38,488 --> 00:30:40,229
and everyone else
gets to run away,

689
00:30:40,273 --> 00:30:42,057
except I can't.

690
00:30:42,666 --> 00:30:44,451
Because I am the volcano.

691
00:30:45,931 --> 00:30:49,978
-[beeps]
-[Mallory coughing]

692
00:30:50,022 --> 00:30:52,154
[Diane] [on video] Oh, my Lord.

693
00:30:55,114 --> 00:30:56,855
[Mallory] Maybe more.

694
00:30:57,333 --> 00:30:59,596
[Mallory coughing]

695
00:30:59,640 --> 00:31:00,902
[man] [on video] Cough it up.

696
00:31:00,946 --> 00:31:02,904
[Mallory coughing]

697
00:31:02,948 --> 00:31:04,297
[Mallory spits]

698
00:31:07,169 --> 00:31:09,737
[heart monitor beeping]

699
00:31:10,825 --> 00:31:12,218
[Mallory]
It was the spring

700
00:31:12,261 --> 00:31:13,872
of my senior year of high school

701
00:31:13,915 --> 00:31:15,917
and my lung function
was down to 60 percent

702
00:31:15,961 --> 00:31:18,398
from my then-baseline
of 75 percent.

703
00:31:18,659 --> 00:31:21,270
I was also 15 pounds
underweight.

704
00:31:21,314 --> 00:31:23,185
A few months
of disordered eating

705
00:31:23,229 --> 00:31:25,448
was enough to give
my B. cepacia infection

706
00:31:25,492 --> 00:31:27,233
the upper hand,

707
00:31:27,276 --> 00:31:29,104
and permanently alter
the trajectory of my health.

708
00:31:30,018 --> 00:31:31,367
High school
was really the first time

709
00:31:31,411 --> 00:31:34,588
that I got to experience Mallory

710
00:31:34,936 --> 00:31:37,765
going from being
extremely healthy, you know,

711
00:31:37,808 --> 00:31:40,246
healthy-seeming one day
and, you know,

712
00:31:40,289 --> 00:31:42,248
killing it in a,
in a water polo game

713
00:31:42,291 --> 00:31:43,640
or a volleyball game,

714
00:31:43,684 --> 00:31:45,425
and then she would
throw up blood

715
00:31:45,468 --> 00:31:47,427
and then be out for three weeks.

716
00:31:47,993 --> 00:31:49,733
[Mallory]
I was in the hospital

717
00:31:49,777 --> 00:31:51,779
for a triple-threat cocktail
of IV antibiotics,

718
00:31:51,822 --> 00:31:53,694
four chest percussion
treatments a day,

719
00:31:53,737 --> 00:31:56,479
and 2,000 calories
of pure milky fat

720
00:31:56,523 --> 00:31:59,221
pumped into my veins daily
through my central line.

721
00:32:00,788 --> 00:32:04,139
I'd been battling my B. cepacia
for six years at this point.

722
00:32:04,183 --> 00:32:06,228
And that day, I was losing.

723
00:32:07,012 --> 00:32:08,317
[Mark]
One of the things that happens

724
00:32:08,361 --> 00:32:11,190
with B. cepacia
in cystic fibrosis lungs

725
00:32:11,668 --> 00:32:17,022
is it develops
antibacterial resistance.

726
00:32:17,065 --> 00:32:20,242
After every antibiotic,
three of them, four of them,

727
00:32:20,286 --> 00:32:22,027
her lung function is nothing.

728
00:32:22,331 --> 00:32:25,987
I was to tell Diane
and also Mallory

729
00:32:26,031 --> 00:32:28,642
that the germ is very resistant

730
00:32:28,685 --> 00:32:31,514
to almost all antibiotics
at that time.

731
00:32:31,558 --> 00:32:34,691
And remember, there's only
one and a half antibiotic

732
00:32:34,735 --> 00:32:37,651
that was sensitive
to this B. cepacia.

733
00:32:38,608 --> 00:32:40,045
[Mallory]
I woke up on my eighth day

734
00:32:40,088 --> 00:32:41,785
in the hospital
to a knock on the door.

735
00:32:41,829 --> 00:32:43,744
It was Dr. Pornchai.

736
00:32:43,787 --> 00:32:47,269
He said, "Mallory, your weight
has dropped yet again today,

737
00:32:47,791 --> 00:32:50,751
and your white blood count
has climbed to 19,000."

738
00:32:52,013 --> 00:32:54,929
Dr. Pornchai was running out
of ideas for what to do.

739
00:32:54,973 --> 00:33:00,021
And so, I did bronchoscopy
to try to clean her lung, get,

740
00:33:00,065 --> 00:33:01,762
get the secretion
out of her lungs

741
00:33:01,805 --> 00:33:03,285
as much as I could.

742
00:33:03,329 --> 00:33:05,070
[Mallory]
As I recovered from anesthesia,

743
00:33:05,113 --> 00:33:07,333
my body started shaking
violently and erratically

744
00:33:07,376 --> 00:33:10,336
as my temperature
rocketed to 106 degrees.

745
00:33:10,379 --> 00:33:13,904
I had sepsis,
an infection in my blood,

746
00:33:13,948 --> 00:33:17,038
and the infection in my lungs
was taking over.

747
00:33:17,082 --> 00:33:19,475
It was wreaking havoc
on my body.

748
00:33:19,519 --> 00:33:22,522
We didn't know if we could
fight it any longer.

749
00:33:23,001 --> 00:33:24,741
She was not doing that well.

750
00:33:24,785 --> 00:33:29,572
She has had a fever,
high fever, and...

751
00:33:29,616 --> 00:33:31,270
[Mallory]
I struggled against five nurses

752
00:33:31,313 --> 00:33:33,141
as they held
my convulsing limbs down

753
00:33:33,185 --> 00:33:35,839
and covered me with ice packs
and cold towels.

754
00:33:36,753 --> 00:33:39,408
We thought I had something
called cepacia syndrome,

755
00:33:39,452 --> 00:33:41,410
which is when people
who are infected

756
00:33:41,454 --> 00:33:43,282
with the bacteria B. cepacia

757
00:33:43,325 --> 00:33:46,676
begin to go into a period
of rapid decline,

758
00:33:47,329 --> 00:33:49,027
a progressive pneumonia

759
00:33:49,070 --> 00:33:51,246
that usually leads to death
within weeks.

760
00:33:53,031 --> 00:33:56,295
[heart monitor beeping]

761
00:33:56,338 --> 00:33:57,644
[Dr. Pornchai]
At that time, I just,

762
00:33:58,645 --> 00:34:03,911
we, we did everything,
but I, I told the family

763
00:34:03,954 --> 00:34:06,653
that this B. cepacia

764
00:34:06,696 --> 00:34:10,178
is the germ
that could, could kill Mallory.

765
00:34:11,266 --> 00:34:13,268
[heart monitor beeping]

766
00:34:13,312 --> 00:34:15,140
[Mallory] It took a few more
weeks in the hospital,

767
00:34:15,183 --> 00:34:17,272
and a few months
of home IV antibiotics.

768
00:34:18,752 --> 00:34:21,320
But eventually, my fever broke.

769
00:34:22,582 --> 00:34:26,020
[cheers and applause]

770
00:34:27,500 --> 00:34:29,458
[on video] [coughs]
We are reminded

771
00:34:29,502 --> 00:34:32,461
of how ephemeral life is and
of how quickly it all rushes by.

772
00:34:33,636 --> 00:34:36,596
This is the first day
of the rest of our lives.

773
00:34:36,857 --> 00:34:38,946
The first day
in which we get to decide

774
00:34:38,989 --> 00:34:42,515
what we want for ourselves,
and how we are going to get it.

775
00:34:43,168 --> 00:34:45,779
Take advantage of the freedom
you have earned

776
00:34:45,822 --> 00:34:47,128
and use it wisely.

777
00:34:47,172 --> 00:34:49,522
[graduates cheering]

778
00:34:49,565 --> 00:34:52,438
[♪♪♪♪♪]

779
00:34:55,136 --> 00:34:56,877
[Diane] I was very nervous.
I didn't want her to go.

780
00:34:56,920 --> 00:34:59,662
Mark was very much in favor
of her going to Stanford.

781
00:34:59,923 --> 00:35:01,229
He thought it was
the right school for her,

782
00:35:01,273 --> 00:35:03,013
and I called my brother,

783
00:35:03,057 --> 00:35:04,841
and I knew that he was there
and that helped.

784
00:35:05,668 --> 00:35:06,974
But was it my first choice?

785
00:35:07,017 --> 00:35:08,671
No.

786
00:35:08,715 --> 00:35:10,238
No, I would have kept her
10 minutes away at UCLA.

787
00:35:11,674 --> 00:35:13,285
[Mallory] My freshman year,

788
00:35:13,328 --> 00:35:17,158
I was on a clinical trial drug
that was amazing.

789
00:35:17,202 --> 00:35:20,248
Um, it kept my lung function
very stable,

790
00:35:20,292 --> 00:35:22,381
and I was actually not
hospitalized for 16 months,

791
00:35:22,424 --> 00:35:24,296
which was the longest
that I had been

792
00:35:24,339 --> 00:35:26,298
without a hospitalization
since I was 10.

793
00:35:27,690 --> 00:35:30,258
[Tyler] I was actually her RA.

794
00:35:30,302 --> 00:35:31,781
Right off the bat,
we became friends,

795
00:35:31,825 --> 00:35:34,132
and Diane was obviously
buzzing around as well.

796
00:35:34,175 --> 00:35:37,004
And one of the first things
that Diane was looking for

797
00:35:37,047 --> 00:35:39,137
when she came to the dorm

798
00:35:39,180 --> 00:35:41,182
was just like a closet
to store medical equipment.

799
00:35:41,226 --> 00:35:42,488
She kind of found me.

800
00:35:42,531 --> 00:35:44,011
We just found like a,

801
00:35:44,054 --> 00:35:45,186
basically a broom closet
and emptied it out,

802
00:35:45,230 --> 00:35:46,318
gave her the key.

803
00:35:47,667 --> 00:35:49,625
[Mallory]
I took over all of the aspects

804
00:35:49,669 --> 00:35:52,498
of my own health care,
managing my prescriptions,

805
00:35:52,541 --> 00:35:54,195
talking to insurance,

806
00:35:54,239 --> 00:35:55,544
making my own
doctor's appointments,

807
00:35:55,588 --> 00:35:57,024
going to the doctor alone,

808
00:35:57,067 --> 00:35:59,200
going to the ER alone,
all that kind of stuff.

809
00:35:59,548 --> 00:36:01,594
Um, and so it was
a very abrupt switch

810
00:36:01,637 --> 00:36:03,248
from pediatric care
to adult care,

811
00:36:03,291 --> 00:36:06,860
but I was very ready for it,
and I liked having that,

812
00:36:06,903 --> 00:36:08,340
that level of control.

813
00:36:10,951 --> 00:36:12,344
You know, it's just
my good fortune

814
00:36:12,387 --> 00:36:15,085
I got assigned her
as a frosh advisee.

815
00:36:15,129 --> 00:36:17,000
I remember being struck by it.

816
00:36:17,044 --> 00:36:20,047
You know, you get a letter
that they wrote.

817
00:36:20,090 --> 00:36:21,527
It cracked me up.

818
00:36:21,570 --> 00:36:22,658
It was, "I'm hoping
to live abroad.

819
00:36:22,702 --> 00:36:24,182
I speak Spanish

820
00:36:24,225 --> 00:36:26,271
but I'm also very interested
in New Zealand.

821
00:36:26,314 --> 00:36:28,969
I think that I want to do
something in the environment."

822
00:36:29,012 --> 00:36:32,015
As I was reading further in it,
it mentioned very briefly

823
00:36:32,059 --> 00:36:33,974
that she also had
cystic fibrosis.

824
00:36:34,017 --> 00:36:35,845
And I mean,
I remember this literally,

825
00:36:35,889 --> 00:36:38,196
I thought,
"I guess I misunderstood

826
00:36:38,239 --> 00:36:39,980
what cystic fibrosis is."

827
00:36:41,460 --> 00:36:43,418
They wanted to put her
in a single room.

828
00:36:44,027 --> 00:36:45,638
She said, "No."

829
00:36:45,681 --> 00:36:49,250
Mallory wanted to have
people in our room a lot, um,

830
00:36:49,294 --> 00:36:52,166
and so we kept our door open.
People would come in and out.

831
00:36:53,036 --> 00:36:54,690
[on video] You're listening
to Green Grid Radio

832
00:36:54,734 --> 00:36:57,780
on KZSU Stanford 90.1 FM.

833
00:36:59,129 --> 00:37:00,827
[Mallory] [voice-over]
We would go to yoga.

834
00:37:00,870 --> 00:37:04,004
We went to brunch a lot.
We went to parties.

835
00:37:04,047 --> 00:37:07,137
It was a pretty typical
college experience.

836
00:37:07,181 --> 00:37:12,447
She just wanted to
not be defined by her illness.

837
00:37:16,059 --> 00:37:18,061
[Charlotte]
I think Mallory was aware

838
00:37:18,105 --> 00:37:22,022
of wasting time, and diligent
about not wasting time.

839
00:37:22,065 --> 00:37:24,503
And that applied
to almost everything she did.

840
00:37:24,546 --> 00:37:26,331
She did it full throttle.

841
00:37:29,334 --> 00:37:30,900
She burned very bright.

842
00:37:31,597 --> 00:37:34,513
I used to tell her, "I wish
you didn't burn so bright,

843
00:37:35,557 --> 00:37:37,733
because bright bulbs
burn out faster."

844
00:37:41,084 --> 00:37:43,609
[Prof. McConnell]
I met Mallory when she was

845
00:37:43,652 --> 00:37:46,133
just starting
her sophomore year.

846
00:37:46,176 --> 00:37:48,701
Stanford has a program
called Sophomore College

847
00:37:48,744 --> 00:37:52,139
where I teach a course
on conservation photography.

848
00:37:52,182 --> 00:37:54,010
[Diane] She applied to
and was accepted to a program

849
00:37:54,054 --> 00:37:56,317
that sent her
to school a month before.

850
00:37:56,361 --> 00:37:58,014
And she didn't want me
to take her up.

851
00:37:58,058 --> 00:38:01,235
She wanted to do it on her own.
And I argued with her

852
00:38:01,279 --> 00:38:03,019
and ultimately
let her win that argument.

853
00:38:03,629 --> 00:38:05,239
[Prof. McConnell] Many students
sort of go through

854
00:38:05,283 --> 00:38:07,502
a journey of discovery,
which is exciting.

855
00:38:07,546 --> 00:38:09,374
But at the same time,
they're doing that

856
00:38:09,417 --> 00:38:13,378
in the context of academically
really intense courses.

857
00:38:13,421 --> 00:38:15,336
[Diane] She landed,
they hit the ground running

858
00:38:15,380 --> 00:38:16,903
with the program, and never
set up her room properly.

859
00:38:16,946 --> 00:38:19,340
Never got a chance to do
all of her treatments.

860
00:38:19,384 --> 00:38:20,863
Hi, Mom.

861
00:38:20,907 --> 00:38:22,343
[Mark] So this is
her new dorm room.

862
00:38:22,387 --> 00:38:24,040
-Hey, can I have--?
-This is my...

863
00:38:24,084 --> 00:38:25,912
-that's my desk over there.
-[girl 1] Hi.

864
00:38:25,955 --> 00:38:27,870
[girl 2] Hi.

865
00:38:29,002 --> 00:38:30,438
[Mark] Okay,
let's go in the bedroom.

866
00:38:30,482 --> 00:38:31,961
[Mallory]
Yeah, this is the bedroom.

867
00:38:32,005 --> 00:38:33,398
Very messy.

868
00:38:34,137 --> 00:38:36,096
-Which one's yours, by the way?
- This one.

869
00:38:36,139 --> 00:38:37,445
-[Mark] Oh, the blue one.
-[Mallory chuckles]

870
00:38:37,837 --> 00:38:39,142
Anything else you want to say?

871
00:38:39,186 --> 00:38:40,753
That's it.

872
00:38:40,796 --> 00:38:42,189
Can you tell
your mom how you miss her?

873
00:38:42,232 --> 00:38:43,843
-I miss you, Mom.
-[Mark laughs]

874
00:38:43,886 --> 00:38:45,758
[Diane] I got a phone call.

875
00:38:45,801 --> 00:38:47,673
She had had a massive bout
of hemoptysis.

876
00:38:47,716 --> 00:38:49,936
She ended up in the hospital.
I immediately flew up.

877
00:38:49,979 --> 00:38:51,894
You only had
two treatments yesterday.

878
00:38:51,938 --> 00:38:53,766
You went 12 hours,
nine hours without a treatment.

879
00:38:53,809 --> 00:38:55,463
-Doesn't affect my lungs.
-You didn't sleep.

880
00:38:55,507 --> 00:38:56,943
-That doesn't affect it.
-[Diane] I don't agree.

881
00:38:56,986 --> 00:38:58,814
[Mallory] Mom,
it's not your lungs.

882
00:38:58,858 --> 00:39:00,425
-How would you have any idea?
-[Diane] Sweetheart.

883
00:39:00,468 --> 00:39:02,383
-I think you...
-You've asked the doctors

884
00:39:02,427 --> 00:39:04,037
-[Diane] Let me just say...
-[Mallory] Just listen to me.

885
00:39:04,080 --> 00:39:05,995
You've asked them
time and time again,

886
00:39:06,039 --> 00:39:07,954
"Will skipping one treatment
affect her lung function?"

887
00:39:07,997 --> 00:39:09,956
-And they said no.
-But you didn't skip one.

888
00:39:09,999 --> 00:39:11,566
You skipped a few this week
and you slept at Danny's...

889
00:39:11,610 --> 00:39:13,612
-I skipped only one this week.
-[Diane] No.

890
00:39:13,655 --> 00:39:15,527
I'm telling you you're wrong,
and you need to listen to me

891
00:39:15,570 --> 00:39:17,050
because it's my body, it's my
lungs, I know what's going on.

892
00:39:18,965 --> 00:39:20,706
[Diane]
Mallory's doctors thought

893
00:39:20,749 --> 00:39:23,491
this exacerbation had been
caused by ataluren.

894
00:39:24,057 --> 00:39:26,842
They pulled her from the trial.
It was heartbreaking.

895
00:39:27,452 --> 00:39:29,105
When they took her off the drug,

896
00:39:29,715 --> 00:39:31,847
she got much worse, and then
she never really recovered.

897
00:39:33,588 --> 00:39:36,330
[Mallory] [voice-over] I woke up
every morning in a fog.

898
00:39:36,374 --> 00:39:39,202
[coughs] Every day, I lost
a little bit more hope.

899
00:39:39,812 --> 00:39:42,423
And every day, I started
to change my perception

900
00:39:42,467 --> 00:39:44,860
of my own self
a little bit more.

901
00:39:45,470 --> 00:39:48,037
Going from a healthy, dynamic,

902
00:39:48,081 --> 00:39:50,866
outgoing, competent young person

903
00:39:51,606 --> 00:39:55,523
to a sickly person
with no hope, no dreams.

904
00:39:56,785 --> 00:40:02,835
Seeing her in a hospital bed
the first few times was jarring.

905
00:40:02,878 --> 00:40:05,272
I had never spent
that much time in a hospital.

906
00:40:05,315 --> 00:40:09,668
It was like, "Wow, she's like
in the hospital for a long time,

907
00:40:09,711 --> 00:40:11,670
she's staying overnight, um,

908
00:40:11,713 --> 00:40:14,281
she's hooked up
to all these things."

909
00:40:14,324 --> 00:40:16,370
[Mallory] [voice-over]
I had pulmonary embolisms.

910
00:40:16,414 --> 00:40:20,418
I had gallstones.
I was coughing up blood.

911
00:40:20,461 --> 00:40:23,333
Everything seemed to be
out of my control,

912
00:40:23,377 --> 00:40:25,248
and I didn't know what to do.

913
00:40:27,947 --> 00:40:29,383
I remember there was
one period of time

914
00:40:29,427 --> 00:40:32,821
when she had, uh,
an IV that she had,

915
00:40:32,865 --> 00:40:34,562
she took with her
everywhere she went,

916
00:40:34,606 --> 00:40:38,348
and she called it, I think
she called it "Sexy Pete."

917
00:40:38,958 --> 00:40:40,699
She just had a good spirit
about everything.

918
00:40:40,742 --> 00:40:43,092
She just,
she always seemed happy.

919
00:40:44,442 --> 00:40:47,923
[Maya] One of the things
that she really brought to us

920
00:40:47,967 --> 00:40:49,621
was positivity and light.

921
00:40:49,664 --> 00:40:52,232
She wanted still
to be the person

922
00:40:52,275 --> 00:40:54,016
who her friends were going to

923
00:40:54,060 --> 00:40:56,715
about their comparatively
minuscule problems.

924
00:40:56,758 --> 00:41:01,284
And I think that I took that
at face value too much.

925
00:41:01,894 --> 00:41:05,550
I just feel like
I didn't ask enough questions,

926
00:41:05,593 --> 00:41:09,292
or I didn't push enough, um,

927
00:41:09,597 --> 00:41:11,425
to really understand
how she was feeling.

928
00:41:11,469 --> 00:41:13,340
She was always smiling,
and she never let anybody

929
00:41:13,383 --> 00:41:15,908
really know
how much she suffered.

930
00:41:15,951 --> 00:41:18,040
She, you know,
took out her opinions

931
00:41:18,084 --> 00:41:20,913
and her feelings
on her journal clearly,

932
00:41:20,956 --> 00:41:24,960
and then tried
to just live a happy life

933
00:41:25,004 --> 00:41:27,136
and pretend
that everything was okay.

934
00:41:27,876 --> 00:41:32,446
[Mallory]
I feel like it's very difficult

935
00:41:32,490 --> 00:41:35,623
for people to understand
what's really going on

936
00:41:35,667 --> 00:41:39,322
and how every single decision
that I make

937
00:41:39,975 --> 00:41:43,065
has a life-or-death
significance to it.

938
00:41:43,762 --> 00:41:47,809
Um, and that's something
that I don't want to convey

939
00:41:47,853 --> 00:41:49,550
because I don't want people
looking at me,

940
00:41:50,072 --> 00:41:54,250
and pitying me or being scared
that I'm going to drop dead

941
00:41:54,294 --> 00:41:56,514
or some, anything like that.

942
00:42:00,082 --> 00:42:02,432
Mallory and I met
at Stanford Hospital.

943
00:42:02,476 --> 00:42:05,174
We were rooming in the rooms
next to each other.

944
00:42:05,218 --> 00:42:08,177
Stanford was like,
a lot of times, my first home

945
00:42:08,221 --> 00:42:10,702
because I was there
more than I was at home.

946
00:42:10,745 --> 00:42:12,921
One of the respiratory
therapists said,

947
00:42:12,965 --> 00:42:15,184
"There's this girl
that's in the room next to you,

948
00:42:15,228 --> 00:42:17,622
and she's around the same age.

949
00:42:17,665 --> 00:42:21,277
And if you want, I'll ask her
if she wants to meet you."

950
00:42:21,321 --> 00:42:24,019
And then after that,
Mallory Facebooked me

951
00:42:24,063 --> 00:42:26,500
and we started talking
on Facebook.

952
00:42:26,544 --> 00:42:28,415
It was very virtual. [chuckles]

953
00:42:29,851 --> 00:42:31,723
[Dr. Eshaghian] We isolate
cystic fibrosis patients

954
00:42:31,766 --> 00:42:33,420
from each other,
and recommend that they don't

955
00:42:33,463 --> 00:42:36,249
stay within six feet
of each other.

956
00:42:36,292 --> 00:42:39,252
I think that's part of what
makes this disease so isolating

957
00:42:39,295 --> 00:42:40,732
when you're living with it.

958
00:42:40,775 --> 00:42:44,126
You know, there's no summer camp
for kids with CF

959
00:42:44,170 --> 00:42:46,085
like there is
for kids with diabetes,

960
00:42:46,128 --> 00:42:47,913
because they could
cough on each other

961
00:42:47,956 --> 00:42:51,090
and transmit bacteria
into each other's lungs.

962
00:42:51,133 --> 00:42:53,962
I definitely think that I can

963
00:42:54,006 --> 00:42:56,269
talk to people
with cystic fibrosis

964
00:42:56,312 --> 00:42:59,098
in a way that I can't
talk to other people.

965
00:42:59,141 --> 00:43:02,405
People with cystic fibrosis can
talk very bluntly to each other.

966
00:43:03,102 --> 00:43:04,146
[phone text notification]

967
00:43:23,165 --> 00:43:25,167
[Caleigh] And then,
with cystic fibrosis,

968
00:43:25,211 --> 00:43:27,517
my experience has been like
you're talking

969
00:43:27,561 --> 00:43:30,956
and then the people
just start to not talk

970
00:43:30,999 --> 00:43:35,003
as often to you,
and start to not answer.

971
00:43:35,569 --> 00:43:40,922
And, um, it's because
people get too sick,

972
00:43:40,966 --> 00:43:42,445
and they can't keep up,

973
00:43:42,489 --> 00:43:44,317
and then it's like
radio silence.

974
00:43:46,536 --> 00:43:48,321
[Mallory]
There's a lot of grieving.

975
00:43:48,364 --> 00:43:52,020
There's grieving for all of
the friends that I have with CF,

976
00:43:52,064 --> 00:43:53,282
for the things
that they're going through,

977
00:43:53,326 --> 00:43:54,719
whether they're dying,

978
00:43:54,762 --> 00:43:56,242
or whether they're
getting transplants,

979
00:43:56,285 --> 00:43:57,722
or whether they're
waiting for a transplant

980
00:43:57,765 --> 00:43:59,593
or just getting sicker.

981
00:43:59,637 --> 00:44:02,814
Cystic fibrosis really isn't
an individual disease.

982
00:44:03,249 --> 00:44:06,644
Um, it's a family
and community disease

983
00:44:06,687 --> 00:44:09,081
in the sense
that when you're sick,

984
00:44:09,124 --> 00:44:10,517
your family aches.

985
00:44:10,560 --> 00:44:11,692
When you're sick,
your friends ache,

986
00:44:11,736 --> 00:44:13,302
and the web kind of goes on.

987
00:44:14,260 --> 00:44:15,522
[Mallory] [voice-over]
It's very difficult for me

988
00:44:15,565 --> 00:44:17,698
to see other people suffering.

989
00:44:17,742 --> 00:44:20,832
It's easier for me
to feel like I'm suffering

990
00:44:20,875 --> 00:44:23,356
than to see other people
that I care about suffering.

991
00:44:27,882 --> 00:44:29,754
I'd been in the hospital
five times,

992
00:44:29,797 --> 00:44:31,451
just that school year.

993
00:44:31,494 --> 00:44:33,540
It seemed like every
organ system of my body

994
00:44:33,583 --> 00:44:35,107
had suffered abuse.

995
00:44:37,109 --> 00:44:38,763
I was in a really dark place

996
00:44:38,806 --> 00:44:39,938
and for the first time,

997
00:44:39,981 --> 00:44:42,027
I was diagnosed with depression.

998
00:44:42,070 --> 00:44:45,030
[keyboard keys clicking]

999
00:44:47,902 --> 00:44:49,599
[Mallory] [voice-over] I think
we have all these second chances

1000
00:44:49,643 --> 00:44:52,211
and can always get to our dreams
like a phoenix,

1001
00:44:52,254 --> 00:44:53,691
venerable and beautiful

1002
00:44:53,734 --> 00:44:55,475
and always rising
above the odds.

1003
00:44:55,736 --> 00:44:58,391
A burning bird turning into ash
and then regenerating.

1004
00:44:58,870 --> 00:45:00,480
And I always have this feeling

1005
00:45:00,523 --> 00:45:01,437
that other people
get to live that way

1006
00:45:01,481 --> 00:45:03,222
with their own bodies.

1007
00:45:03,265 --> 00:45:05,703
They'll pull foot
342 all-nighters in college,

1008
00:45:05,746 --> 00:45:08,009
eat trash, drink booze,
and stress always

1009
00:45:08,053 --> 00:45:10,011
and live like they're
going to die young.

1010
00:45:10,055 --> 00:45:12,013
But that's exactly
what they're not doing.

1011
00:45:13,798 --> 00:45:16,452
And like nothing they do now
is going to change that.

1012
00:45:16,888 --> 00:45:19,151
And for most of them,
they're probably right.

1013
00:45:22,284 --> 00:45:23,329
I don't sleep tonight.

1014
00:45:24,809 --> 00:45:26,549
I'm in the hospital
two days later.

1015
00:45:26,593 --> 00:45:28,813
And I'm never gaining it back,

1016
00:45:28,856 --> 00:45:31,511
and next year, when I can't walk
up a flight of stairs anymore,

1017
00:45:31,554 --> 00:45:33,426
I'm cursing myself and saying...

1018
00:45:35,820 --> 00:45:37,386
What if I just..."

1019
00:45:38,648 --> 00:45:40,825
I'm a bird and my choices
might lead me to burn

1020
00:45:40,868 --> 00:45:42,565
but I don't get
to rise up untainted,

1021
00:45:42,609 --> 00:45:44,785
ever glorious, flying freely.

1022
00:45:51,618 --> 00:45:54,534
[somber music]

1023
00:46:01,628 --> 00:46:04,892
It was 2012 in May,
my sophomore year of college.

1024
00:46:04,936 --> 00:46:07,286
My lung function was 50 percent.

1025
00:46:08,809 --> 00:46:11,116
One day in the middle
of this Maui trip,

1026
00:46:11,159 --> 00:46:13,814
I woke up
and everything felt heavy.

1027
00:46:13,858 --> 00:46:16,251
My body felt heavy,
my head felt heavy,

1028
00:46:16,295 --> 00:46:18,079
my heart felt heavy.

1029
00:46:18,950 --> 00:46:20,560
Driving to the beach,

1030
00:46:20,603 --> 00:46:21,866
I had a hard time
looking at the sun.

1031
00:46:23,345 --> 00:46:24,869
The day was too bright,
the sky too blue.

1032
00:46:26,740 --> 00:46:28,916
When I got there,
I went straight for the ocean

1033
00:46:28,960 --> 00:46:30,700
and submerged underwater,

1034
00:46:30,744 --> 00:46:32,485
trying to hold my breath
as long as I could,

1035
00:46:32,528 --> 00:46:34,487
so I could stay there

1036
00:46:34,530 --> 00:46:36,402
because it was the only place
where the pieces of myself

1037
00:46:36,445 --> 00:46:38,578
came close to coming back
together again.

1038
00:46:42,364 --> 00:46:43,931
I was thinking about mortality

1039
00:46:43,975 --> 00:46:46,281
and disease progression
and acceleration.

1040
00:46:47,239 --> 00:46:50,459
And I felt helpless
and vulnerable and broken.

1041
00:46:52,113 --> 00:46:54,768
I started to cry underwater,
and the salty tears

1042
00:46:54,812 --> 00:46:57,379
were mingling
with the saltwater of the ocean,

1043
00:46:57,423 --> 00:46:59,860
and everything was clear
and blue and quiet,

1044
00:46:59,904 --> 00:47:01,949
and I was completely alone.

1045
00:47:01,993 --> 00:47:05,083
[water bubbling]

1046
00:47:06,040 --> 00:47:07,346
But then I wasn't.

1047
00:47:08,695 --> 00:47:12,264
This honu,
this green sea turtle swam up.

1048
00:47:12,307 --> 00:47:13,874
And I was probably
imagining this,

1049
00:47:13,918 --> 00:47:15,615
but it felt like
it was looking at me.

1050
00:47:15,658 --> 00:47:18,270
Not just looking at me,
but really seeing me.

1051
00:47:19,227 --> 00:47:22,013
And I looked back at this
creature with its brown shell

1052
00:47:22,056 --> 00:47:25,146
and its cracked skin
and its large, dark eyes.

1053
00:47:25,451 --> 00:47:27,235
And I'm not a very spiritual
person generally,

1054
00:47:27,279 --> 00:47:29,020
but I thought to myself

1055
00:47:29,063 --> 00:47:31,022
that it had come along
at that moment for a reason.

1056
00:47:33,938 --> 00:47:35,896
My soul felt endangered
at the time

1057
00:47:35,940 --> 00:47:37,898
by the threats to my body.

1058
00:47:37,942 --> 00:47:39,987
And that turtle made me see
that I did have the strength

1059
00:47:40,031 --> 00:47:42,772
to ride through the turbulence
of my disease with grace.

1060
00:47:44,557 --> 00:47:47,821
[crickets chirping]

1061
00:47:48,822 --> 00:47:50,911
[Micah] I think
she came to accepting

1062
00:47:50,955 --> 00:47:52,434
the reality of like,
what she was,

1063
00:47:52,478 --> 00:47:54,045
the hand that she was
dealt in life,

1064
00:47:54,088 --> 00:47:56,221
and I think she really
made it her mission not to,

1065
00:47:56,699 --> 00:47:58,919
not to let it prevent her from,
you know,

1066
00:47:58,963 --> 00:48:01,487
living a normal life
like whatever way she could.

1067
00:48:02,792 --> 00:48:05,143
[♪♪♪♪♪]

1068
00:48:12,106 --> 00:48:13,934
[Mallory] [voice-over]
Mallory Smith is a student

1069
00:48:13,978 --> 00:48:16,458
at Stanford
with an unusual past.

1070
00:48:16,502 --> 00:48:18,330
She's going
to tell you two stories

1071
00:48:18,373 --> 00:48:20,723
that don't seem to have anything
to do with each other.

1072
00:48:20,767 --> 00:48:22,551
But be patient.

1073
00:48:22,595 --> 00:48:25,424
She'll walk you through
a story of DNA and destruction,

1074
00:48:25,467 --> 00:48:29,210
colonization, and conservation
of the body and the biome.

1075
00:48:31,560 --> 00:48:33,998
[Prof. McConnell] She enrolled
in a year-long program,

1076
00:48:34,041 --> 00:48:35,913
and it's called
the Senior Reflection.

1077
00:48:36,696 --> 00:48:40,308
She wanted to take
her own experiences with CF,

1078
00:48:41,266 --> 00:48:44,704
her own sense of stewardship
over her own body,

1079
00:48:45,357 --> 00:48:47,707
and make a parallel
with our stewardship

1080
00:48:47,750 --> 00:48:50,144
for the planet
and for conservation.

1081
00:48:50,840 --> 00:48:54,975
It was clear that she's someone
who thinks through writing

1082
00:48:55,019 --> 00:48:59,197
and then when she read
those works in her podcast,

1083
00:48:59,240 --> 00:49:01,764
hearing her voice bring
all those words to life

1084
00:49:01,808 --> 00:49:04,376
was just incredibly moving.

1085
00:49:04,419 --> 00:49:06,073
[Mallory] [voice-over]
My lungs are an ecosystem

1086
00:49:06,117 --> 00:49:09,163
forever altered,
but the stakes are clear.

1087
00:49:09,207 --> 00:49:10,686
If I don't step up,

1088
00:49:10,730 --> 00:49:12,732
this fragile island
that is my body

1089
00:49:12,775 --> 00:49:16,127
will drown under the rising sea
of green mucus and disappear.

1090
00:49:16,170 --> 00:49:18,564
Null and void, erased and gone.

1091
00:49:20,783 --> 00:49:22,829
The Hawaiian Islands
have experienced abuse

1092
00:49:22,872 --> 00:49:24,657
and destruction
from the tallest mountain peak

1093
00:49:24,700 --> 00:49:26,354
to the deepest part
of the ocean.

1094
00:49:26,876 --> 00:49:29,096
But for many people
who care about Hawaii,

1095
00:49:29,140 --> 00:49:32,665
there's never been more hope,
more promise, more empowerment.

1096
00:49:33,361 --> 00:49:35,059
Many native
and local communities

1097
00:49:35,102 --> 00:49:36,930
are rallying to fight
for the future health

1098
00:49:36,974 --> 00:49:38,410
of the islands.

1099
00:49:38,453 --> 00:49:43,241
♪ Don't go away from me

1100
00:49:44,111 --> 00:49:45,895
[Mallory] [voice-over]
Even though I live today,

1101
00:49:45,939 --> 00:49:47,767
in objectively worse
health standing than ever

1102
00:49:47,810 --> 00:49:50,117
with a lung function
of about 40 percent,

1103
00:49:50,161 --> 00:49:53,555
I've never felt more hopeful,
more resilient, more empowered.

1104
00:49:54,469 --> 00:49:56,080
I never asked to have CF

1105
00:49:56,123 --> 00:49:58,517
or to be colonized
with B. cepacia.

1106
00:49:58,560 --> 00:50:00,954
It's not my fault that both
my parents were carriers

1107
00:50:00,998 --> 00:50:02,477
of a cystic fibrosis

1108
00:50:02,521 --> 00:50:04,218
transmembrane
regulator mutation,

1109
00:50:04,262 --> 00:50:06,742
and that I was blessed
to get both recessive alleles.

1110
00:50:07,221 --> 00:50:09,484
But that doesn't absolve me
of the responsibility

1111
00:50:09,528 --> 00:50:11,095
to fight this disease.

1112
00:50:11,138 --> 00:50:13,184
Fight it with everything I have
every day.

1113
00:50:13,923 --> 00:50:15,664
I didn't ask for illness,
but I own it

1114
00:50:15,708 --> 00:50:17,753
because if I don't,
no one else will.

1115
00:50:18,015 --> 00:50:23,063
♪ But remember no news
Is good news ♪

1116
00:50:23,107 --> 00:50:26,501
♪ And the good news is
I love you ♪

1117
00:50:33,769 --> 00:50:35,597
[Diane] [on video]
Are you cooking?

1118
00:50:35,641 --> 00:50:37,338
-[on video] Is this a video?
-[Diane] [on video] Yeah.

1119
00:50:37,382 --> 00:50:39,601
[on video] I'm cooking food
and I'm eating it too.

1120
00:50:39,645 --> 00:50:41,429
[Diane] [on video] Whooh.

1121
00:50:41,473 --> 00:50:45,477
[Mallory] Salmon, some salad,
a lot of ricey carbs.

1122
00:50:45,520 --> 00:50:46,782
[Diane] [on video] Ricey carbs.

1123
00:50:46,826 --> 00:50:48,567
If I had heard from somebody

1124
00:50:48,610 --> 00:50:50,351
that right after college,
I'd be living in LA,

1125
00:50:50,395 --> 00:50:54,051
I would have said, "No way."
Um, but here I am.

1126
00:50:54,094 --> 00:50:55,661
She really wanted
to go to Hawaii.

1127
00:50:55,704 --> 00:50:57,184
That was her plan.

1128
00:50:57,228 --> 00:50:58,925
And because of the hemoptysis,
they said, "No."

1129
00:50:58,968 --> 00:51:00,492
Then she thought,
"I can't live in Hawaii,

1130
00:51:00,535 --> 00:51:02,233
but I can live
in Manhattan Beach,

1131
00:51:02,276 --> 00:51:05,192
and have a dog." And so she did.

1132
00:51:06,324 --> 00:51:07,890
[Mallory] With cystic fibrosis,

1133
00:51:07,934 --> 00:51:10,371
you're constantly
toeing the line between...

1134
00:51:11,807 --> 00:51:14,375
acceptance and fighting back.

1135
00:51:16,943 --> 00:51:20,990
The common wisdom is that
you should always be fighting

1136
00:51:21,034 --> 00:51:23,123
and always dream big.

1137
00:51:23,167 --> 00:51:26,170
But if you live
like that always,

1138
00:51:26,213 --> 00:51:28,520
and you have
a very serious illness,

1139
00:51:28,563 --> 00:51:29,869
you're just going to be
disappointed

1140
00:51:29,912 --> 00:51:31,436
day after day after day.

1141
00:51:31,827 --> 00:51:34,656
And so, I really feel like

1142
00:51:34,700 --> 00:51:36,832
it's a balance between
striving for more

1143
00:51:36,876 --> 00:51:38,878
and being happy
with what you have.

1144
00:51:39,400 --> 00:51:41,228
[Susan Gottlieb]
It was hard to believe

1145
00:51:41,272 --> 00:51:44,536
that she was so young and,
and her work ethic was,

1146
00:51:44,579 --> 00:51:46,407
I mean, it was just incredible.

1147
00:51:47,582 --> 00:51:49,454
[Mallory] I had always
held on to this idea

1148
00:51:49,497 --> 00:51:51,325
that I was going to work
in sustainable development,

1149
00:51:51,369 --> 00:51:53,545
and I was going to travel.

1150
00:51:53,588 --> 00:51:55,199
And then one day,
I just had to accept

1151
00:51:55,242 --> 00:51:57,766
that that wasn't a realistic
thing for me to do.

1152
00:51:58,941 --> 00:52:00,595
Now, I'm very happy as a writer,

1153
00:52:00,639 --> 00:52:01,727
as a freelance writer.

1154
00:52:01,770 --> 00:52:03,598
I make my own schedule,

1155
00:52:03,642 --> 00:52:05,165
I can write about things
that I'm passionate about.

1156
00:52:08,037 --> 00:52:11,171
Because of the water situation
here in California,

1157
00:52:11,215 --> 00:52:13,695
I just felt that, you know,
we had to start somewhere.

1158
00:52:14,261 --> 00:52:16,872
So I started putting in
drought-tolerant plants.

1159
00:52:16,916 --> 00:52:18,961
As I was doing more reading
and researching

1160
00:52:19,005 --> 00:52:20,963
on drought-tolerant plants,

1161
00:52:21,007 --> 00:52:23,749
I discovered that there was
such a thing as a native plant.

1162
00:52:23,792 --> 00:52:26,230
And the more I read
about native plants,

1163
00:52:26,273 --> 00:52:28,449
and how important
they are to the wildlife,

1164
00:52:28,493 --> 00:52:31,670
I just got mesmerized
by that whole concept.

1165
00:52:32,236 --> 00:52:35,369
And then I thought I should
maybe produce a book.

1166
00:52:37,023 --> 00:52:39,025
You've probably seen
the picture of her

1167
00:52:39,068 --> 00:52:43,203
working with her inhalator
and her, her jacket on.

1168
00:52:43,247 --> 00:52:45,118
And she's working on my book
in that picture.

1169
00:52:45,162 --> 00:52:47,294
And I just don't know
how many people

1170
00:52:47,338 --> 00:52:48,730
would be able to do that.

1171
00:52:49,818 --> 00:52:52,299
[Mallory]
I would say that my purpose

1172
00:52:52,343 --> 00:52:56,216
is to give something back
within my lifetime.

1173
00:52:58,000 --> 00:53:00,307
I used to envision that
in a lot of different ways.

1174
00:53:00,351 --> 00:53:05,486
And now, I think that.
you can make a difference

1175
00:53:05,530 --> 00:53:08,228
in big and small ways.

1176
00:53:08,272 --> 00:53:09,882
And sometimes,
ways that seem small

1177
00:53:09,925 --> 00:53:11,449
are actually really big.

1178
00:53:14,060 --> 00:53:15,540
When Mallory moved
to Manhattan Beach,

1179
00:53:15,583 --> 00:53:17,324
she had a few months
of relative stability

1180
00:53:17,368 --> 00:53:19,892
and had a great time
at the beach and was so happy,

1181
00:53:19,935 --> 00:53:22,286
the happiest I'd seen her
in a long time.

1182
00:53:22,329 --> 00:53:25,898
-[Mallory] Aaah!
-[laughing] Oh.

1183
00:53:25,941 --> 00:53:27,856
[Diane] And then,
she started to get sick.

1184
00:53:27,900 --> 00:53:29,554
I never knew if,

1185
00:53:29,597 --> 00:53:31,556
you know, the next day
I was going to be in the ER,

1186
00:53:32,121 --> 00:53:34,907
or in the hospital, or whatever.

1187
00:53:37,170 --> 00:53:40,129
For a young person
to be able to do all of that,

1188
00:53:40,173 --> 00:53:43,872
and balance life,
a job, is a challenge.

1189
00:53:43,916 --> 00:53:47,311
And in the meantime,
if you don't feel well,

1190
00:53:47,354 --> 00:53:50,139
um, it's challenging
just to get through your day.

1191
00:53:51,706 --> 00:53:56,145
Her lung function was already
in about the 40 percent range,

1192
00:53:56,189 --> 00:53:59,323
that's entering into
the moderate to severe, um,

1193
00:53:59,366 --> 00:54:02,239
range of lung function.

1194
00:54:02,282 --> 00:54:05,111
[Mallory] [voice-over]
[coughs] Healthy people

1195
00:54:05,154 --> 00:54:07,635
have thousands of bacteria
species present in the lungs.

1196
00:54:07,679 --> 00:54:10,856
It's a diverse microbial
ecosystem that remains healthy

1197
00:54:10,899 --> 00:54:12,858
because the diversity of species

1198
00:54:12,901 --> 00:54:16,253
means no individual bacteria
can gain too much traction.

1199
00:54:16,296 --> 00:54:18,211
But cystic fibrosis
makes this type

1200
00:54:18,255 --> 00:54:20,387
of idyllic
polyculture impossible.

1201
00:54:20,822 --> 00:54:22,433
Gone are the healthy bacteria

1202
00:54:22,476 --> 00:54:24,435
present
in a healthy polyculture.

1203
00:54:24,478 --> 00:54:26,480
Now I'm stuck
with a monoculture system

1204
00:54:26,524 --> 00:54:29,396
perched atop airways that are
growing increasingly fragile

1205
00:54:29,440 --> 00:54:31,572
from the endless assault.

1206
00:54:31,616 --> 00:54:36,447
[coughing] To have your lungs
being destroyed from the inside

1207
00:54:36,751 --> 00:54:39,363
feels like there's a boulder
sitting on your chest

1208
00:54:39,885 --> 00:54:41,974
preventing you
from taking a deep breath.

1209
00:54:43,149 --> 00:54:45,412
It feels like there's
little knives stabbing you

1210
00:54:45,456 --> 00:54:47,632
in the bases of your lungs
every time you try to breathe

1211
00:54:47,675 --> 00:54:49,373
or every time you cough.

1212
00:54:49,416 --> 00:54:52,550
You could say it's the,

1213
00:54:52,593 --> 00:54:55,857
it's the fear and disappointment
I experience every time

1214
00:54:55,901 --> 00:54:59,034
I can no longer do something
I previously thought was easy.

1215
00:54:59,078 --> 00:55:00,775
[on video] We just walked a ton.

1216
00:55:01,254 --> 00:55:03,038
[Diane] [on video] I know, Mal.
That's really good,

1217
00:55:03,082 --> 00:55:04,344
considering you haven't been
out of bed in a week.

1218
00:55:05,171 --> 00:55:06,390
[Mallory] [voice-over]
Being short of breath

1219
00:55:06,433 --> 00:55:08,174
is almost like a state of mind.

1220
00:55:08,217 --> 00:55:10,350
It's hard to focus
on anything else

1221
00:55:10,394 --> 00:55:12,396
when you have to focus
every minute on breathing.

1222
00:55:12,439 --> 00:55:13,701
[machine thumping]

1223
00:55:13,745 --> 00:55:15,834
[coughing]

1224
00:55:15,877 --> 00:55:17,662
[Diane] And then
she went through a period

1225
00:55:17,705 --> 00:55:20,491
of back-to-back hospitalizations
where they could not get control

1226
00:55:20,534 --> 00:55:22,493
over the cepacia,
and ultimately,

1227
00:55:22,536 --> 00:55:24,756
UCLA was calling Stanford
to consult,

1228
00:55:24,799 --> 00:55:27,585
and Stanford finally
called me and said,

1229
00:55:27,628 --> 00:55:29,282
"Time to bring her back."

1230
00:55:29,326 --> 00:55:31,110
[Mallory] Last week,
I went to see my doctor

1231
00:55:31,153 --> 00:55:32,894
at Stanford, my doctor there

1232
00:55:32,938 --> 00:55:35,201
who's really the man
that I trust with my life.

1233
00:55:35,244 --> 00:55:36,768
If I were on my deathbed,

1234
00:55:36,811 --> 00:55:38,596
I would want him to be
the one making decisions.

1235
00:55:38,639 --> 00:55:42,382
He advised that it would be best
if I put my health first

1236
00:55:42,426 --> 00:55:48,170
at this point and focused on
spending at least six months

1237
00:55:48,214 --> 00:55:49,955
or longer in the Bay Area

1238
00:55:49,998 --> 00:55:51,739
so that I could be close
to Stanford Hospital

1239
00:55:51,783 --> 00:55:56,309
so that he could sort of regain
some understanding of my,

1240
00:55:56,353 --> 00:55:58,877
my situation
and so that I could be close

1241
00:55:58,920 --> 00:56:00,444
to the people
who really specialize

1242
00:56:00,487 --> 00:56:03,360
in my specific,
complicated issues.

1243
00:56:04,883 --> 00:56:06,363
Yeah.

1244
00:56:06,406 --> 00:56:08,452
I met Mallory
at a New Year's Eve party

1245
00:56:08,495 --> 00:56:11,324
or New Year's Eve pregame
for a party.

1246
00:56:11,368 --> 00:56:13,282
I thought she was really cute,
right off the bat.

1247
00:56:13,326 --> 00:56:15,328
And at the time,
she was living in LA.

1248
00:56:15,372 --> 00:56:16,895
And so, she was
in a different city,

1249
00:56:16,938 --> 00:56:18,940
so I kind of wrote her off
in the beginning.

1250
00:56:18,984 --> 00:56:20,768
I was like, "I don't
want to do long distance."

1251
00:56:20,812 --> 00:56:22,770
And once I found out she moved,

1252
00:56:22,814 --> 00:56:25,469
she was moving back
to the Bay Area, you know,

1253
00:56:25,512 --> 00:56:27,819
I made sure whenever she was
at the next party

1254
00:56:27,862 --> 00:56:29,516
and the mutual group
of friends we had

1255
00:56:29,560 --> 00:56:31,910
that I was there to say hello.

1256
00:56:31,953 --> 00:56:33,128
When she moved to San Francisco,

1257
00:56:33,172 --> 00:56:34,695
I was living in San Francisco.

1258
00:56:35,043 --> 00:56:37,437
You know, there were
more things happening

1259
00:56:37,481 --> 00:56:39,744
that were changing
her decisions,

1260
00:56:39,787 --> 00:56:43,269
as in she was starting to lose
more control over her decisions.

1261
00:56:43,878 --> 00:56:45,750
[Talia]
She wasn't able to go out

1262
00:56:45,793 --> 00:56:48,361
and do a lot
when she lived here.

1263
00:56:48,405 --> 00:56:50,624
It was always just a lot
of activities at their apartment

1264
00:56:50,668 --> 00:56:53,105
and it's a small
San Francisco apartment

1265
00:56:53,148 --> 00:56:55,107
and you can't fit
that many people in there.

1266
00:56:55,150 --> 00:56:58,415
So it just forced us all to get
to know each other a lot better.

1267
00:56:59,024 --> 00:57:02,027
That's when she started
being on oxygen a lot more.

1268
00:57:02,636 --> 00:57:04,812
It was difficult for her,
but she always

1269
00:57:04,856 --> 00:57:07,467
kept a smile on her face
and stayed optimistic.

1270
00:57:08,250 --> 00:57:10,427
[Talia] I went to go visit her
at the hospital.

1271
00:57:10,470 --> 00:57:14,126
And I have this vivid memory
of asking Mallory

1272
00:57:14,169 --> 00:57:15,519
who else was coming to visit her

1273
00:57:15,562 --> 00:57:18,391
and she just kind
of coyly was like,

1274
00:57:18,435 --> 00:57:20,959
"Oh, this guy
that I met at a party."

1275
00:57:21,263 --> 00:57:24,745
And I was trying to get
more information out of her,

1276
00:57:24,789 --> 00:57:26,355
but Diane was in the room,

1277
00:57:26,399 --> 00:57:28,314
and she didn't really
want to say anything.

1278
00:57:28,357 --> 00:57:29,576
What way my pickup line?
[chuckles]

1279
00:57:29,620 --> 00:57:31,360
That's a good question.

1280
00:57:31,404 --> 00:57:33,145
I think we would both say
that our turning point was

1281
00:57:33,188 --> 00:57:37,758
when we sat down on the balcony
of the house party we were at.

1282
00:57:37,802 --> 00:57:39,281
And we just talked about life.

1283
00:57:39,325 --> 00:57:41,109
You know, I'm not gonna say

1284
00:57:41,153 --> 00:57:44,112
that we had this insanely
deep conversation right away.

1285
00:57:44,156 --> 00:57:45,679
But it was more
of the superficial things

1286
00:57:45,723 --> 00:57:47,159
that we felt comfortable with

1287
00:57:47,202 --> 00:57:49,030
in terms of
what brought us happiness.

1288
00:57:49,074 --> 00:57:50,467
And we found a lot of
those things were the same.

1289
00:57:50,510 --> 00:57:53,644
[upbeat music]

1290
00:57:54,558 --> 00:57:58,213
♪ I must confess
When I wear this dress ♪

1291
00:57:58,257 --> 00:57:59,606
I'd known about
Mallory's sickness,

1292
00:57:59,650 --> 00:58:02,827
um, just from her presence
online.

1293
00:58:02,870 --> 00:58:04,742
She was very open
about everything

1294
00:58:04,785 --> 00:58:06,526
that she was dealing with.

1295
00:58:06,570 --> 00:58:08,920
[vocalizing]

1296
00:58:08,963 --> 00:58:11,357
♪ I feel so happy

1297
00:58:11,400 --> 00:58:14,447
♪ I'm stuck on you

1298
00:58:15,317 --> 00:58:17,406
[Jack] I remember
the optimism we both felt.

1299
00:58:17,450 --> 00:58:20,148
just being young, and you know,

1300
00:58:20,192 --> 00:58:23,325
having the good fortune
to have a good education,

1301
00:58:23,369 --> 00:58:26,894
and figuring out how
to use that in the world.

1302
00:58:28,287 --> 00:58:31,290
[vocalizing]

1303
00:58:31,333 --> 00:58:33,118
They liked to surf,
they liked the beach,

1304
00:58:33,161 --> 00:58:35,163
they were laid-back.

1305
00:58:35,207 --> 00:58:37,949
[Uncle Danny] He was obviously
madly in love with Mallory.

1306
00:58:37,992 --> 00:58:40,081
She was madly in love with him.

1307
00:58:40,125 --> 00:58:44,172
[Gaby] For her to be able
to have conversations about

1308
00:58:44,216 --> 00:58:46,697
"Once this happens, we will."

1309
00:58:46,740 --> 00:58:48,742
It had her looking forward.

1310
00:58:48,786 --> 00:58:50,439
[Jack] There was nothing
standing in our way

1311
00:58:50,483 --> 00:58:52,877
between pursuing love.

1312
00:58:52,920 --> 00:58:54,531
You know, as long as
Mallory was alive,

1313
00:58:54,574 --> 00:58:56,358
she was gonna fight for her life

1314
00:58:56,402 --> 00:58:58,578
and for the love that she felt
for the people around her,

1315
00:58:58,622 --> 00:59:00,449
and I was gonna fight
for her as well.

1316
00:59:01,407 --> 00:59:03,148
So I was coaching
a Junior Olympics

1317
00:59:03,191 --> 00:59:04,584
12 and under team and,
[clears throat]

1318
00:59:04,628 --> 00:59:06,020
Junior Olympics happened to be

1319
00:59:06,064 --> 00:59:07,935
up in the Stanford area
that year.

1320
00:59:07,979 --> 00:59:09,415
So I texted her and said,

1321
00:59:09,458 --> 00:59:11,417
"Hey, I'm gonna be
up in the Bay Area.

1322
00:59:11,460 --> 00:59:12,766
We should meet for lunch."

1323
00:59:12,810 --> 00:59:14,159
She said, "Okay, cool.
Let's do that."

1324
00:59:14,202 --> 00:59:16,422
And then, by the time
I got up there,

1325
00:59:16,465 --> 00:59:18,250
she had been admitted
to the hospital.

1326
00:59:18,293 --> 00:59:20,295
So she said, "Well, you can
come visit in the hospital."

1327
00:59:20,339 --> 00:59:23,255
So I went there,
and Diane was there.

1328
00:59:23,864 --> 00:59:26,475
Dr. Mohabir
had actually been away.

1329
00:59:26,519 --> 00:59:27,999
I think something happened
with his sister

1330
00:59:28,042 --> 00:59:29,348
and he had been gone.

1331
00:59:29,391 --> 00:59:30,610
And we hadn't seen him
in a while

1332
00:59:30,654 --> 00:59:31,568
after we had moved
back up for him,

1333
00:59:31,611 --> 00:59:33,004
and we were frustrated.

1334
00:59:33,047 --> 00:59:35,441
And so, Coach Bowie
came to the room,

1335
00:59:35,484 --> 00:59:37,051
and I said to Mallory,

1336
00:59:37,095 --> 00:59:38,444
"I'm gonna get him
some food in the cafeteria,

1337
00:59:38,487 --> 00:59:40,011
and we'll be back
in five minutes.

1338
00:59:40,054 --> 00:59:40,881
Do you want anything?"
and we went to go get him

1339
00:59:40,925 --> 00:59:42,100
some French fries.

1340
00:59:42,709 --> 00:59:44,493
I was down
in the cafeteria with Diane.

1341
00:59:44,537 --> 00:59:46,757
We were getting some food,
and Diane got either a text

1342
00:59:46,800 --> 00:59:49,803
or a call from,
from Mallory's doctor.

1343
00:59:50,456 --> 00:59:52,632
So we went back up to the room
and the doctor actually said,

1344
00:59:52,676 --> 00:59:54,242
"You know,
maybe Rob should leave."

1345
00:59:54,286 --> 00:59:56,114
And Diane and Mallory,
"No, no, he's family."

1346
00:59:56,157 --> 00:59:57,855
Well, what Dr. Mohabir said

1347
00:59:57,898 --> 00:59:59,857
was that the antibiotics
had done all that they could do

1348
00:59:59,900 --> 01:00:02,207
and that she'd become
resistant to them.

1349
01:00:02,729 --> 01:00:05,253
And he said that if they were
to withdraw the antibiotics,

1350
01:00:05,297 --> 01:00:06,907
she wouldn't live a year.

1351
01:00:06,951 --> 01:00:08,822
The doctor said that
no one would transplant her,

1352
01:00:08,866 --> 01:00:11,172
and she should consider
going on hospice care,

1353
01:00:11,608 --> 01:00:15,133
which basically means
just go home and die.

1354
01:00:15,176 --> 01:00:16,961
I was crying,
Mallory was crying.

1355
01:00:17,004 --> 01:00:18,963
Rob, I think was like
a deer in the headlights

1356
01:00:19,006 --> 01:00:21,400
with his French fries
that were smelling the room up.

1357
01:00:21,792 --> 01:00:24,403
It's one of those, you know,
visceral memories that you have.

1358
01:00:24,446 --> 01:00:25,839
This is the first time
that I saw

1359
01:00:25,883 --> 01:00:28,363
both her and Diane
kind of break.

1360
01:00:28,407 --> 01:00:30,322
And it was, I mean, it was just,

1361
01:00:30,365 --> 01:00:32,019
just got heavy like that.

1362
01:00:32,063 --> 01:00:33,717
Uh, so she gave me the news

1363
01:00:33,760 --> 01:00:37,590
with, I think, Mohabir
and her mom there and I was,

1364
01:00:37,634 --> 01:00:39,679
I was trying to block it out
for the first couple minutes.

1365
01:00:39,723 --> 01:00:41,159
And then this,

1366
01:00:41,202 --> 01:00:43,291
the doctor and her mom
stepped out to,

1367
01:00:43,335 --> 01:00:47,208
to give us some time,
and I completely broke down.

1368
01:00:47,252 --> 01:00:49,558
The idea that the center

1369
01:00:49,602 --> 01:00:51,169
where she'd been treated
for years and years

1370
01:00:51,212 --> 01:00:54,694
wouldn't even evaluate her
or talk to her about it

1371
01:00:54,738 --> 01:00:57,305
was very, very, very hurtful
to her.

1372
01:00:57,697 --> 01:00:59,177
[Gaby] That's one of the lowest,

1373
01:00:59,220 --> 01:01:03,660
I mean, she couldn't
brighten up that time.

1374
01:01:05,357 --> 01:01:08,186
A little bit of disbelief.
I mean, you can't.

1375
01:01:12,016 --> 01:01:13,539
It was dark.

1376
01:01:17,412 --> 01:01:19,980
[somber violin playing]

1377
01:01:25,029 --> 01:01:27,684
[birds chirping]

1378
01:01:34,081 --> 01:01:35,779
[Diane] [voice-over]
The conversation

1379
01:01:35,822 --> 01:01:37,345
with Dr. Mohabir
when he said he didn't think

1380
01:01:37,389 --> 01:01:38,477
there was going to be
a transplant

1381
01:01:38,520 --> 01:01:40,131
was really difficult.

1382
01:01:40,174 --> 01:01:41,959
[Micah] When my sister
was talking about

1383
01:01:42,002 --> 01:01:43,482
how the doctors
were telling her that,

1384
01:01:43,525 --> 01:01:45,179
you know, they told her
that she should not

1385
01:01:45,223 --> 01:01:48,661
even try to get one
and she wouldn't accept that.

1386
01:01:48,705 --> 01:01:51,316
You know, I saw my mom,
my parents fighting to get it.

1387
01:01:51,359 --> 01:01:52,839
So first of all,
it's important to understand

1388
01:01:52,883 --> 01:01:56,190
that Diane and my mom
are extremely close.

1389
01:01:56,234 --> 01:02:00,673
Um, and my mom had this line,
she'd say, "I don't do sad."

1390
01:02:00,717 --> 01:02:04,677
And I think Diane adopted
the same thing, right?

1391
01:02:04,721 --> 01:02:06,984
She just, you know,
her attitude was, I'm not,

1392
01:02:07,027 --> 01:02:09,726
you know, no "pity parties".
I don't do sad.

1393
01:02:09,769 --> 01:02:11,379
She's just gonna power through

1394
01:02:11,423 --> 01:02:17,168
whatever was adversely
impacting her, um. period.

1395
01:02:17,211 --> 01:02:18,996
And at that point,
I thought, well,

1396
01:02:19,039 --> 01:02:20,911
I'm gonna ask for more help.

1397
01:02:20,954 --> 01:02:22,608
And I found another doctor,
and I said,

1398
01:02:22,651 --> 01:02:24,001
her name is Dr. Chhatwani,

1399
01:02:24,044 --> 01:02:25,524
I said,
"Would you help Dr. Mohabir?

1400
01:02:25,567 --> 01:02:27,482
He's not having any luck."

1401
01:02:27,526 --> 01:02:30,355
And so, Dr. Chhatwani had
written some personal appeal

1402
01:02:30,398 --> 01:02:33,488
in a chat room
for transplant centers.

1403
01:02:33,532 --> 01:02:36,100
[Mark] We actively pursued
transplant

1404
01:02:36,143 --> 01:02:38,624
even after being,
having discouraging news

1405
01:02:38,667 --> 01:02:40,452
and rejections from people.

1406
01:02:40,495 --> 01:02:44,195
And UPMC was the one name
that we had always heard

1407
01:02:44,238 --> 01:02:46,806
that was willing
to take difficult cases.

1408
01:02:46,850 --> 01:02:48,634
[man] One, two, three.

1409
01:02:48,677 --> 01:02:50,592
[Dr. Pilewski] Yeah,
so when I first met Mallory,

1410
01:02:50,636 --> 01:02:53,465
her lung function
was less than 30 percent.

1411
01:02:53,508 --> 01:02:56,207
Among the spectrum of patients
we see for transplant,

1412
01:02:56,250 --> 01:02:58,775
she was sick
and really needed it.

1413
01:02:59,340 --> 01:03:02,430
So she was facing
transplant or death.

1414
01:03:05,085 --> 01:03:07,131
Um, and from the very beginning,

1415
01:03:07,174 --> 01:03:09,437
I sensed that there was a lot
of courage on Mallory's part,

1416
01:03:09,481 --> 01:03:12,179
that she had a lot
she wanted to live for.

1417
01:03:12,223 --> 01:03:13,702
She wasn't done.

1418
01:03:14,965 --> 01:03:17,881
-[Diane] [on video] Hi, Mal!
-Hi!

1419
01:03:17,924 --> 01:03:19,534
[Diane] [on video]
Here we are on August 13th.

1420
01:03:19,578 --> 01:03:21,928
Mallory's about to take a swim

1421
01:03:22,407 --> 01:03:24,452
in the manner
that allows her to breathe

1422
01:03:24,496 --> 01:03:26,977
since she's using oxygen.
And here we go.

1423
01:03:30,763 --> 01:03:32,809
Moving to Pittsburgh
was very traumatic.

1424
01:03:32,852 --> 01:03:35,681
My mom had been diagnosed
with end-stage ovarian cancer,

1425
01:03:35,724 --> 01:03:38,945
and so Mark made the decision
to stay back to be with Micah

1426
01:03:38,989 --> 01:03:40,425
and to take care of my parents.

1427
01:03:40,468 --> 01:03:41,730
And I went with Mallory.

1428
01:03:41,774 --> 01:03:43,123
Wave to the camera.

1429
01:03:43,167 --> 01:03:44,951
I just blocked it out,

1430
01:03:44,995 --> 01:03:49,477
because I could not allow myself
to engage in the emotion

1431
01:03:49,521 --> 01:03:52,306
that I would feel
if I were to really process

1432
01:03:52,350 --> 01:03:54,091
what it was I was doing,

1433
01:03:54,134 --> 01:03:55,701
to leave my mom at a time
when she was dying.

1434
01:03:55,744 --> 01:03:57,355
I didn't want to leave my dad.

1435
01:03:57,398 --> 01:03:59,357
[Mark] [on video]
Dad. Yes, Dad, wave.

1436
01:03:59,400 --> 01:04:00,967
[Grandma] [on video] Maybe take
your hat off, sweetheart.

1437
01:04:01,011 --> 01:04:02,708
[on video] My hair's not combed.

1438
01:04:02,751 --> 01:04:04,492
[Aunt Meryl]
You know, when we got

1439
01:04:04,536 --> 01:04:07,452
my mother's diagnosis,
I remember telling my daughter,

1440
01:04:07,495 --> 01:04:10,759
and she was, you know,
quiet for a few beats.

1441
01:04:10,803 --> 01:04:12,544
And then she said,
"Maybe it's good."

1442
01:04:12,587 --> 01:04:14,024
And I said, "Why?"

1443
01:04:14,067 --> 01:04:15,677
And she said,
"Because if Mallory dies,

1444
01:04:15,721 --> 01:04:17,505
Grandma would lose her mind."

1445
01:04:21,596 --> 01:04:24,121
I was terribly lonely.

1446
01:04:25,687 --> 01:04:30,170
I didn't socialize very much,
and I talked to them every day.

1447
01:04:31,171 --> 01:04:33,043
I went, I went to them
when I could.

1448
01:04:34,696 --> 01:04:36,350
What was shocking
about Pittsburgh

1449
01:04:36,960 --> 01:04:40,093
was how sick she was,
how different it was.

1450
01:04:40,137 --> 01:04:42,835
I mean, everything was so hard.

1451
01:04:42,879 --> 01:04:46,143
And I think that was hard
for her, just in itself.

1452
01:04:46,447 --> 01:04:48,972
She was tired.

1453
01:04:49,015 --> 01:04:51,583
It was a lot of work,
a lot of treatments.

1454
01:04:51,626 --> 01:04:53,454
She was on oxygen.

1455
01:04:53,498 --> 01:04:55,717
She became
a lot more comfortable

1456
01:04:56,370 --> 01:04:59,025
talking about the fact
that she was scared

1457
01:04:59,069 --> 01:05:00,679
and just what it meant

1458
01:05:00,722 --> 01:05:02,463
if she couldn't get
a lung transplant,

1459
01:05:02,507 --> 01:05:04,857
or what it meant if she could,

1460
01:05:04,901 --> 01:05:07,077
and what that surgery was gonna
look like and that, you know,

1461
01:05:07,120 --> 01:05:08,948
she could die
on the operating table.

1462
01:05:08,992 --> 01:05:12,734
I was living in LA.
Um, I was worried for her.

1463
01:05:13,083 --> 01:05:14,998
-[Jack] Surprise!
-What!

1464
01:05:15,041 --> 01:05:16,651
[Jack] I would come to
visit Mallory once a month.

1465
01:05:16,695 --> 01:05:18,697
Oh, my God.

1466
01:05:18,740 --> 01:05:20,655
[Jack] I think anyone who goes
through a transplant,

1467
01:05:20,699 --> 01:05:22,135
especially
a double lung transplant,

1468
01:05:22,179 --> 01:05:24,094
which is harder to get,

1469
01:05:24,137 --> 01:05:26,661
the demand for transplants
is much higher than the supply.

1470
01:05:27,749 --> 01:05:31,579
Every day, the call could come
from an unknown number

1471
01:05:31,623 --> 01:05:33,930
with a Pittsburgh area code
of whether or not

1472
01:05:33,973 --> 01:05:35,757
you get to live
another 10 years,

1473
01:05:35,801 --> 01:05:39,283
and that was
a surreal mindset to be in.

1474
01:05:39,326 --> 01:05:41,981
I think Mallory
said it best is, um,

1475
01:05:42,025 --> 01:05:43,896
she tried to get the best
out of life every day.

1476
01:05:43,940 --> 01:05:46,029
But some days,
all she could do was persist

1477
01:05:46,464 --> 01:05:48,248
and just survive
to live another day.

1478
01:05:49,293 --> 01:05:50,816
[Diane] [on video] Hi, Mal.

1479
01:05:50,859 --> 01:05:52,209
[on video] Hi.

1480
01:05:56,909 --> 01:05:58,998
She was hospitalized
several times

1481
01:05:59,042 --> 01:06:01,958
here in Pittsburgh
from acute infections.

1482
01:06:02,610 --> 01:06:04,264
And so we were, we were worried

1483
01:06:04,308 --> 01:06:06,397
that she wasn't going
to get her opportunity.

1484
01:06:06,440 --> 01:06:09,574
You know, she would expire
before a suitable donor

1485
01:06:09,617 --> 01:06:11,576
would be, would be available.

1486
01:06:12,969 --> 01:06:14,971
[on video] Uh, things seem to be

1487
01:06:15,754 --> 01:06:17,234
getting worse instead of better.

1488
01:06:17,277 --> 01:06:19,366
I have no flu anymore,

1489
01:06:19,410 --> 01:06:22,065
but we think
it's cepacia syndrome

1490
01:06:22,108 --> 01:06:26,983
with fevers
and shortness of breath and pain

1491
01:06:27,026 --> 01:06:30,682
and symptoms that we cannot
get under control,

1492
01:06:30,725 --> 01:06:34,468
and seems like I'm resistant,
to, with the antibiotics.

1493
01:06:34,512 --> 01:06:36,775
So, we'll see what happens.

1494
01:06:36,818 --> 01:06:39,647
My boyfriend
just left town, Jack,

1495
01:06:39,691 --> 01:06:43,173
he went to San Diego,
and I miss him.

1496
01:06:44,217 --> 01:06:45,610
That's all.

1497
01:06:48,047 --> 01:06:50,528
[Dr. Pilewski] I think
it takes a commitment

1498
01:06:50,571 --> 01:06:54,053
to do more than just
what's in the textbooks,

1499
01:06:54,097 --> 01:06:57,100
and maybe even more than
what's in the current journals,

1500
01:06:57,143 --> 01:06:59,363
and what the FDA
has available to you,

1501
01:06:59,406 --> 01:07:02,061
and say, "Well, let's push
the envelope."

1502
01:07:02,105 --> 01:07:08,459
I started looking into ways
to get lungs for Mallory

1503
01:07:08,502 --> 01:07:11,462
that would avoid
the scarcity problem.

1504
01:07:12,115 --> 01:07:13,551
I did some research

1505
01:07:13,594 --> 01:07:15,640
and found that there were
some people

1506
01:07:15,683 --> 01:07:19,165
working on taking lungs
from pigs.

1507
01:07:19,209 --> 01:07:22,168
I was keen on, on that idea

1508
01:07:22,212 --> 01:07:27,826
because if pig lungs could be
used for human transplants,

1509
01:07:27,869 --> 01:07:30,220
then there wouldn't be
a shortage.

1510
01:07:30,263 --> 01:07:32,700
And then, and then
Mallory's lungs

1511
01:07:32,744 --> 01:07:35,094
wouldn't have to be
allocated to someone

1512
01:07:35,138 --> 01:07:37,009
who didn't have B. cepacia.

1513
01:07:37,314 --> 01:07:40,012
I networked
through a friend and,

1514
01:07:40,056 --> 01:07:42,362
and got to this professor
at Harvard,

1515
01:07:42,406 --> 01:07:44,930
and he wrote back and said
that he didn't think

1516
01:07:44,973 --> 01:07:48,194
that the transplantation
from another species

1517
01:07:48,238 --> 01:07:50,109
would be ready any time soon,

1518
01:07:50,153 --> 01:07:52,546
but that I ought to look
into other possibilities

1519
01:07:52,590 --> 01:07:56,898
for clearing the infection,
including phage therapy.

1520
01:07:56,942 --> 01:07:59,553
I read about bacteriophages,

1521
01:08:00,163 --> 01:08:03,296
which is Greek
for "bacteria-eater."

1522
01:08:03,340 --> 01:08:04,993
A researcher in Canada

1523
01:08:05,037 --> 01:08:08,910
had successfully eliminated
a B. cepacia infection

1524
01:08:09,215 --> 01:08:12,479
in a cystic fibrosis
knockout mouse.

1525
01:08:12,523 --> 01:08:14,046
He explained to me

1526
01:08:14,090 --> 01:08:18,050
that phages are
naturally occurring organisms,

1527
01:08:18,442 --> 01:08:22,402
so therapies based on them
can't really be patented.

1528
01:08:22,446 --> 01:08:24,361
So even if it could
save someone's life,

1529
01:08:24,404 --> 01:08:26,014
no one can make money on it.

1530
01:08:26,058 --> 01:08:27,973
And if no one
can make money on it,

1531
01:08:28,016 --> 01:08:31,411
then no one is going to spend
the millions of dollars it takes

1532
01:08:31,977 --> 01:08:36,024
to do a double-blind
placebo-controlled trial

1533
01:08:36,068 --> 01:08:37,983
meeting FDA standards.

1534
01:08:38,418 --> 01:08:42,292
So that was too far away
from the clinic.

1535
01:08:42,335 --> 01:08:44,555
-[laughter]
-[woman] [on video] So, Mal.

1536
01:08:44,598 --> 01:08:47,297
How do you feel about
potentially getting new lungs?

1537
01:08:47,340 --> 01:08:49,342
[Mallory] [on video]
I feel stoked.

1538
01:08:49,386 --> 01:08:51,127
-[woman] [on video] Stoked.
-[Mallory] [on video] Stoked.

1539
01:08:51,170 --> 01:08:52,302
[woman] [on video]
Diane, how do you feel

1540
01:08:52,345 --> 01:08:53,912
about Mallory's new lungs?

1541
01:08:53,955 --> 01:08:55,522
We can't see your fingers.

1542
01:08:55,566 --> 01:08:57,176
[laughing]

1543
01:08:57,220 --> 01:08:58,743
[Gaby] Talia was there.

1544
01:08:59,222 --> 01:09:01,006
And they called me,
and they said,

1545
01:09:01,049 --> 01:09:03,356
"She just got called
for transplant.

1546
01:09:03,400 --> 01:09:05,924
You need to come."
I was like, "Okay."

1547
01:09:05,967 --> 01:09:08,492
So I got on a plane immediately.

1548
01:09:09,667 --> 01:09:16,108
And they came in at six
in the morning, and they said,

1549
01:09:16,978 --> 01:09:19,155
"Okay, we're taking you
down to pre-op."

1550
01:09:19,198 --> 01:09:21,026
And I was like, "Oh, shit."

1551
01:09:21,069 --> 01:09:25,465
By seven, we're down there,
and they tell us, you know,

1552
01:09:25,509 --> 01:09:27,380
"They're good lungs,
but someone else got 'em."

1553
01:09:27,424 --> 01:09:29,861
[Jack] I got in in time
for the doctor to tell us

1554
01:09:29,904 --> 01:09:31,428
that no, they were going to
someone else.

1555
01:09:31,471 --> 01:09:33,430
We were mortified
because nobody had told us

1556
01:09:33,473 --> 01:09:35,127
that Mallory was a backup,

1557
01:09:35,171 --> 01:09:37,347
and we didn't even know
that that was actually a thing.

1558
01:09:37,912 --> 01:09:41,089
So we all went out
for Mediterranean food

1559
01:09:41,133 --> 01:09:42,526
at 11 o'clock in the morning.

1560
01:09:42,569 --> 01:09:44,180
And I remember
Mallory saying to me,

1561
01:09:44,223 --> 01:09:46,051
"Mom, this meal was amazing.

1562
01:09:46,094 --> 01:09:48,096
And if I'd gotten
the transplant,

1563
01:09:48,445 --> 01:09:50,142
I would not have had
this delicious meal

1564
01:09:50,186 --> 01:09:51,622
with all my friends."

1565
01:09:51,665 --> 01:09:54,146
And I realized
that was her secret.

1566
01:09:54,190 --> 01:09:56,235
No matter how much shit
was thrown at her,

1567
01:09:56,496 --> 01:10:00,413
she was able to rebound
and resurface and move forward.

1568
01:10:00,457 --> 01:10:02,285
She just felt
very fortunate despite,

1569
01:10:02,328 --> 01:10:04,896
um, the poor hand
she'd been dealt.

1570
01:10:05,288 --> 01:10:07,725
She felt betrayed
by being dealt that hand,

1571
01:10:07,768 --> 01:10:10,597
but she also felt blessed by
the opportunities that she had.

1572
01:10:12,599 --> 01:10:13,992
[man] Okay.
Un momento. Un momento.

1573
01:10:14,035 --> 01:10:15,733
[Mallory] Oh, Maria.

1574
01:10:16,342 --> 01:10:19,302
[conversation on phone]

1575
01:10:19,345 --> 01:10:22,130
Oh, stop, stop.
Okay. What are you--?

1576
01:10:22,174 --> 01:10:23,349
Tell her that
she's makin' her cry.

1577
01:10:23,393 --> 01:10:24,872
That's not okay.

1578
01:10:24,916 --> 01:10:26,222
-We cannot make her cry.
-[man] It's not bad.

1579
01:10:26,265 --> 01:10:27,745
No. Tell her
not to make her cry.

1580
01:10:28,572 --> 01:10:31,052
This is, this is
the happy time of the night.

1581
01:10:31,096 --> 01:10:33,707
The tears, the tears are when
they tell us it's not viable.

1582
01:10:34,360 --> 01:10:35,840
[man] Okay.

1583
01:10:35,883 --> 01:10:37,320
-Tell her that she has to...
-[man] Okay.

1584
01:10:37,363 --> 01:10:39,104
-Tell her I miss her.
-No pity parties.

1585
01:10:39,147 --> 01:10:42,455
[Mallory] [crying] It's
definitely a stressful process

1586
01:10:42,499 --> 01:10:46,546
to get the call,
have it not go your way,

1587
01:10:46,590 --> 01:10:48,200
get another call,
have it not go your way,

1588
01:10:48,244 --> 01:10:50,376
get another call,
have it not go your way.

1589
01:10:50,420 --> 01:10:52,248
By the time the fourth call
comes around,

1590
01:10:52,291 --> 01:10:55,251
it's sort of hard to believe
that it really will happen.

1591
01:10:55,555 --> 01:10:58,558
So I think I spent most of
the day in a state of disbelief,

1592
01:10:58,602 --> 01:11:00,168
and it's only really now
hitting me

1593
01:11:00,212 --> 01:11:01,692
that it actually might happen.

1594
01:11:02,301 --> 01:11:04,738
In the five-month period
where I got no calls

1595
01:11:04,782 --> 01:11:06,566
in between the first two
dry runs and these,

1596
01:11:06,610 --> 01:11:10,266
and then the last one,
it started to just feel like

1597
01:11:10,309 --> 01:11:13,312
it was never gonna happen,
and we were just going to be

1598
01:11:13,356 --> 01:11:15,009
living in Pittsburgh
for years and years

1599
01:11:15,053 --> 01:11:18,317
with no news
on this transplant, so.

1600
01:11:18,361 --> 01:11:21,015
-[coughing]
-[background conversation]

1601
01:11:24,280 --> 01:11:26,630
[machine beeping]

1602
01:11:26,673 --> 01:11:28,022
And then she said
it took four times,

1603
01:11:28,066 --> 01:11:29,328
which makes it seem like
it's happening.

1604
01:11:29,372 --> 01:11:30,547
-Oh.
-Guys, picture?

1605
01:11:30,590 --> 01:11:32,070
-Oh, well.
-Holy shit, Talia.

1606
01:11:32,113 --> 01:11:33,811
[Mark] Don't read,
don't read into this.

1607
01:11:33,854 --> 01:11:35,116
I'm sorry. I'm reading into
every little everything.

1608
01:11:35,160 --> 01:11:36,335
-All right.
-Oh, there's Jack.

1609
01:11:36,379 --> 01:11:37,597
-He wants his goodbye.
-Bye.

1610
01:11:39,077 --> 01:11:40,121
[Jack] [over phone] Bye, Mal.
Love you tons.

1611
01:11:40,165 --> 01:11:41,906
I love you too.
Wish you were here.

1612
01:11:42,646 --> 01:11:45,213
[Jack] [over phone] Wish I was
too. Super proud of you.

1613
01:11:45,257 --> 01:11:47,085
They will give you updates
as they get them.

1614
01:11:47,128 --> 01:11:48,434
Yeah.

1615
01:11:49,130 --> 01:11:51,045
Oh, boy.

1616
01:11:51,089 --> 01:11:53,700
I'll get in bed, Mark, go
ahead. You can hug her first.

1617
01:11:53,744 --> 01:11:55,311
I want the last hug.

1618
01:11:55,963 --> 01:11:57,182
[indistinct chattering]

1619
01:12:00,054 --> 01:12:01,491
[Mallory] Thank you.

1620
01:12:09,586 --> 01:12:10,891
[Talia] Guess I picked
the wrong side.

1621
01:12:10,935 --> 01:12:12,937
[laughs]

1622
01:12:14,504 --> 01:12:16,462
[Diane] They're just grabbing
an O2 tank.

1623
01:12:16,506 --> 01:12:17,855
You're perfect now.

1624
01:12:21,815 --> 01:12:23,077
[woman] Thank you.

1625
01:12:23,121 --> 01:12:25,645
[Talia]
I knew I saw her in there

1626
01:12:25,689 --> 01:12:27,125
-through the years.
-[woman] Okay.

1627
01:12:27,168 --> 01:12:28,344
[Talia] That's good.

1628
01:12:28,387 --> 01:12:30,433
[Mallory crying]

1629
01:12:34,262 --> 01:12:36,090
[Talia] Guess I should
take a picture.

1630
01:12:37,440 --> 01:12:39,485
Okay. Perfect.
All right, thank you.

1631
01:12:46,623 --> 01:12:51,062
-[heart monitor beeping]
-[muted chatter]

1632
01:12:51,105 --> 01:12:53,020
[Doctor] The lungs look okay.
I think it's gonna be fine.

1633
01:12:53,064 --> 01:12:55,632
But I want to put 'em
on the machine, okay?

1634
01:12:55,675 --> 01:12:56,850
Okay, all right.

1635
01:12:56,894 --> 01:12:59,592
[muted chatter]

1636
01:13:02,856 --> 01:13:05,685
[machine hissing, beeping]

1637
01:13:10,951 --> 01:13:12,388
[Diane] You worry,

1638
01:13:12,431 --> 01:13:14,128
"Is my child gonna die
on the table?

1639
01:13:14,172 --> 01:13:15,695
Is my child gonna make it
through surgery?"

1640
01:13:21,353 --> 01:13:23,268
[Mark] I was, half of me thought

1641
01:13:23,311 --> 01:13:25,096
that I might never
see her again.

1642
01:13:26,140 --> 01:13:28,491
-[nurse] Okay, Doctor?
-[doctor] Yeah.

1643
01:13:28,534 --> 01:13:30,406
-[nurse] We're ready for ya.
-[doctor] All right.

1644
01:13:30,449 --> 01:13:34,148
[Mark] Um, half of me
knew that I would.

1645
01:13:34,192 --> 01:13:35,628
[nurse] Just hold on the lungs.

1646
01:13:35,672 --> 01:13:37,413
[doctor] All right,
so the right lung's out.

1647
01:13:38,109 --> 01:13:40,459
[machine beeping]

1648
01:13:50,469 --> 01:13:53,603
It's unlike anything
to see your daughter

1649
01:13:53,646 --> 01:13:56,083
who was tethered to oxygen
before the surgery

1650
01:13:56,127 --> 01:13:58,477
and who you thought wasn't ever
gonna get a transplant

1651
01:13:58,521 --> 01:14:01,480
because of the cepacia
be able to sit up

1652
01:14:01,524 --> 01:14:04,135
and without oxygen
take this breath.

1653
01:14:04,178 --> 01:14:06,442
And it wasn't smooth like...
[breathes deeply]

1654
01:14:07,660 --> 01:14:09,880
you know, it was
challenging for her,

1655
01:14:09,923 --> 01:14:11,838
but it was really
quite exciting.

1656
01:14:15,581 --> 01:14:17,453
[Diane] [on video] You wanna
smile? One, two, three.

1657
01:14:17,496 --> 01:14:19,846
-Two, three.
-[woman] [on video] Smile.

1658
01:14:19,890 --> 01:14:21,195
[Diane] [on video]
Is she doing well or what?

1659
01:14:21,239 --> 01:14:22,849
[woman] [on video] Yeah.

1660
01:14:22,893 --> 01:14:24,634
[Mallory] [voice-over]
I feel like people with CF

1661
01:14:24,677 --> 01:14:26,026
are privy to secrets
it takes most other people

1662
01:14:26,070 --> 01:14:27,898
a lifetime to understand.

1663
01:14:27,941 --> 01:14:30,509
[nurse] [on video] Here's
Mallory walking down the hall.

1664
01:14:30,553 --> 01:14:32,293
[Mallory]
How lucky we are to be alive.

1665
01:14:34,557 --> 01:14:36,515
How lucky anyone is
who has their health.

1666
01:14:37,647 --> 01:14:39,170
How we should be appreciative

1667
01:14:39,213 --> 01:14:40,693
of anything
that's in our control

1668
01:14:40,737 --> 01:14:43,391
since our health
is most often not.

1669
01:14:43,435 --> 01:14:45,132
[cheering]

1670
01:14:45,176 --> 01:14:47,091
That we can leave behind
a legacy when we go

1671
01:14:47,134 --> 01:14:48,484
that will impact others.

1672
01:14:50,137 --> 01:14:52,488
That simple things are often
the most beautiful.

1673
01:14:52,836 --> 01:14:54,490
That love and happiness

1674
01:14:54,533 --> 01:14:56,535
are the most important things
to strive for.

1675
01:14:59,495 --> 01:15:01,366
That ultimately,
we shouldn't give a damn

1676
01:15:01,409 --> 01:15:02,933
what other people think

1677
01:15:02,976 --> 01:15:04,891
because everyone's making
their own way,

1678
01:15:04,935 --> 01:15:06,589
and everyone's facing
different struggles

1679
01:15:06,632 --> 01:15:08,112
that other people
aren't aware of.

1680
01:15:08,678 --> 01:15:11,898
CF has given me my value system
and ultimately,

1681
01:15:11,942 --> 01:15:14,727
no matter how hard it is,
I'm grateful for it.

1682
01:15:18,339 --> 01:15:22,343
Mallory Smith is getting ready
to celebrate her 25th birthday.

1683
01:15:22,387 --> 01:15:23,910
It's just three days away.

1684
01:15:23,954 --> 01:15:26,783
That may not sound
extraordinary, but it is.

1685
01:15:26,826 --> 01:15:29,481
You see, she believes doctors
here in Pittsburgh

1686
01:15:29,525 --> 01:15:30,613
saved her life.

1687
01:15:30,656 --> 01:15:32,615
They did. They did.

1688
01:15:32,658 --> 01:15:34,355
The doctors there
are just my heroes,

1689
01:15:34,399 --> 01:15:37,881
because they took a chance on me
when nobody else would.

1690
01:15:39,186 --> 01:15:40,840
[interviewer]
You get emotional about it.

1691
01:15:40,884 --> 01:15:42,581
[Mallory] [voice-over]
The pain is temporary

1692
01:15:42,625 --> 01:15:43,843
and then you get to live
the rest of your life

1693
01:15:43,887 --> 01:15:45,628
with being able to breathe.

1694
01:15:46,106 --> 01:15:47,717
Yeah. The big moment for us

1695
01:15:47,760 --> 01:15:49,719
was being able
to leave the hospital

1696
01:15:49,762 --> 01:15:52,286
and she was still on antibiotics
at that time,

1697
01:15:52,330 --> 01:15:54,593
but she no longer needed oxygen.

1698
01:15:54,637 --> 01:15:57,596
She was breathing through
a 100 percent viable lungs,

1699
01:15:57,640 --> 01:15:59,424
normal person lungs,

1700
01:15:59,467 --> 01:16:01,513
and we were able to go
on a walk in the crisp fall air

1701
01:16:01,557 --> 01:16:04,037
and watch a local kickball game

1702
01:16:04,081 --> 01:16:06,605
between like two
beer-drinking teams.

1703
01:16:06,649 --> 01:16:09,652
And [chuckles]
we really enjoyed ourselves,

1704
01:16:09,695 --> 01:16:11,784
'cause Mal never got tired.
We never needed to wait.

1705
01:16:11,828 --> 01:16:16,006
And our hopes were
at a peak at that time,

1706
01:16:16,049 --> 01:16:19,487
'cause we were talking about
plans to move back to LA,

1707
01:16:19,531 --> 01:16:21,489
how long that would be,
where she would want to live,

1708
01:16:21,533 --> 01:16:24,841
and we were full
of happiness and joy.

1709
01:16:24,884 --> 01:16:29,323
♪ Ditch plastic
It's fantastic ♪

1710
01:16:39,203 --> 01:16:41,640
I think it was about
a week after her birthday

1711
01:16:41,684 --> 01:16:44,164
that she started getting fevers.

1712
01:16:44,208 --> 01:16:46,166
And that's a danger sign,

1713
01:16:46,210 --> 01:16:49,387
because the fever's a sign
of a bacterial infection.

1714
01:16:49,996 --> 01:16:53,086
And the risk
in B. cepacia transplants

1715
01:16:53,130 --> 01:16:55,915
is that the B. cepacia
will reinfect the new lungs

1716
01:16:55,959 --> 01:16:57,830
'cause of the drugs
that you take

1717
01:16:57,874 --> 01:17:01,094
to suppress your immune system
to prevent rejection.

1718
01:17:01,138 --> 01:17:03,096
[Dr. Pilewski]
And Mallory unfortunately

1719
01:17:03,140 --> 01:17:08,406
developed a pneumonia
from her Burkholderia.

1720
01:17:08,449 --> 01:17:11,061
It was necrotizing pneumonia
that was going fast,

1721
01:17:11,104 --> 01:17:13,150
and they showed me
the X-ray pictures

1722
01:17:13,193 --> 01:17:14,717
of it going up your lungs.

1723
01:17:14,760 --> 01:17:16,893
First, when your lungs
are newly transplanted,

1724
01:17:16,936 --> 01:17:18,808
it's all black,
the black is good.

1725
01:17:18,851 --> 01:17:21,854
And then there's the white film
that starts creeping up.

1726
01:17:23,203 --> 01:17:25,205
It's, you don't
want to believe it.

1727
01:17:26,554 --> 01:17:28,339
[nurse]
Every single person...

1728
01:17:28,382 --> 01:17:29,819
[Jack] I don't think
I was ready to accept that,

1729
01:17:29,862 --> 01:17:32,735
especially after the hope
and happiness

1730
01:17:32,778 --> 01:17:35,607
that we had just shared
over that last visit together.

1731
01:17:35,651 --> 01:17:37,174
I didn't want that to go away.

1732
01:17:37,217 --> 01:17:40,351
We hadn't felt that in months,
almost a year.

1733
01:17:41,221 --> 01:17:44,224
[Diane] She was on a crazy
complicated round of IVs.

1734
01:17:44,877 --> 01:17:46,662
I just wasn't going
to give up hope.

1735
01:17:47,358 --> 01:17:52,711
I was working feverishly
to try to find new antibiotics,

1736
01:17:52,755 --> 01:17:56,672
and there was one
that was hopeful

1737
01:17:57,150 --> 01:17:58,848
that came from Japan

1738
01:17:58,891 --> 01:18:01,372
that hadn't been approved
in the United States yet,

1739
01:18:01,415 --> 01:18:03,287
but it didn't work.

1740
01:18:03,330 --> 01:18:05,245
[Diane] That's when
Mark read an article

1741
01:18:05,289 --> 01:18:08,640
about an extraordinary scientist
named Steffanie Strathdee,

1742
01:18:08,684 --> 01:18:12,426
who saved her husband from
a superbug using phage therapy.

1743
01:18:13,123 --> 01:18:17,649
I reached out to them.
And Steffanie sent out a tweet

1744
01:18:17,693 --> 01:18:20,739
to phage researchers
all over the world

1745
01:18:20,783 --> 01:18:23,220
trying to find people
who had phages

1746
01:18:23,263 --> 01:18:25,701
that were active
against B. cepacia.

1747
01:18:26,353 --> 01:18:29,487
And we were successful,
we found two of them.

1748
01:18:32,490 --> 01:18:35,928
I never say no to an idea,
unless it's dangerous.

1749
01:18:35,972 --> 01:18:37,930
And this clearly
was not dangerous,

1750
01:18:37,974 --> 01:18:41,020
saying we're going to take
a bacterial isolate

1751
01:18:41,064 --> 01:18:43,457
to try and identify
a novel therapy.

1752
01:18:44,328 --> 01:18:45,808
Sure, let's do it.

1753
01:18:45,851 --> 01:18:46,939
[phone text notification]

1754
01:18:46,983 --> 01:18:49,725
[heart monitor beeping]

1755
01:18:50,900 --> 01:18:52,510
[phone text notification]

1756
01:18:56,296 --> 01:18:58,690
So there's a process
of identifying a phage

1757
01:18:58,734 --> 01:19:01,867
that's active against
the specific bacterium.

1758
01:19:02,215 --> 01:19:04,652
And then that phage
has to be grown up

1759
01:19:04,696 --> 01:19:06,654
in sufficient quantities to use

1760
01:19:07,220 --> 01:19:10,441
and prepared such that
there's not a contaminant.

1761
01:19:10,484 --> 01:19:13,400
That process evolved
in Mallory's case

1762
01:19:13,444 --> 01:19:15,054
at breakneck speed,

1763
01:19:15,707 --> 01:19:19,624
in large part by having
three teams of people

1764
01:19:19,667 --> 01:19:22,192
who were really,
really committed to it.

1765
01:19:22,845 --> 01:19:26,805
The Navy Biomedical Weapons
facility in Maryland

1766
01:19:26,849 --> 01:19:28,459
had been researching that
for a while

1767
01:19:28,502 --> 01:19:30,722
for soldiers coming back
from overseas

1768
01:19:30,766 --> 01:19:33,420
with these really random
superbugs that no one had seen.

1769
01:19:33,464 --> 01:19:34,813
They wanted to treat them.

1770
01:19:34,857 --> 01:19:36,815
And also some
Canadian firms that

1771
01:19:36,859 --> 01:19:39,165
had been researching phages
academically.

1772
01:19:39,209 --> 01:19:41,951
And so,
Mark was able to combine,

1773
01:19:41,994 --> 01:19:45,128
along with
Steffanie Strathdee's help,

1774
01:19:45,868 --> 01:19:51,134
this global research group
for saving his daughter.

1775
01:19:51,177 --> 01:19:53,963
She was definitely
not feeling well.

1776
01:19:54,006 --> 01:19:56,661
She was like,
"Sorry I can't talk more."

1777
01:19:56,704 --> 01:19:58,271
And then they told her,

1778
01:19:58,315 --> 01:19:59,838
"Look, we need to put you
on the respirator."

1779
01:20:00,230 --> 01:20:05,322
And that sucked, because,
you know, those were,

1780
01:20:05,365 --> 01:20:09,456
those were signs to her
that things were really bad.

1781
01:20:09,805 --> 01:20:12,546
That was an incredible time
for, for her and her family

1782
01:20:12,590 --> 01:20:15,332
because sort of
on a day-to-day basis,

1783
01:20:15,375 --> 01:20:17,551
you'd see these tiny glimpses
of getting better.

1784
01:20:17,595 --> 01:20:19,727
Fevers would abate
for a day and a half,

1785
01:20:20,728 --> 01:20:22,643
and then fevers would come back.

1786
01:20:24,080 --> 01:20:27,561
[Jack] I was on the night watch,
two a.m. to 10 a.m.

1787
01:20:28,084 --> 01:20:31,652
And in the middle of the night,
she shook me awake, you know,

1788
01:20:31,696 --> 01:20:33,437
and I was like, "Oh,
what's wrong? What's wrong?

1789
01:20:33,480 --> 01:20:35,700
You need something like
water, bathroom, nurse?

1790
01:20:35,743 --> 01:20:37,441
What's?" You know,
I was ready to fight.

1791
01:20:37,484 --> 01:20:40,052
[laughs] And she was like,
"No, I need to write."

1792
01:20:40,096 --> 01:20:42,402
And so I got her a pen
and pad of paper.

1793
01:20:43,577 --> 01:20:46,929
And she wrote me this note
that read,

1794
01:20:46,972 --> 01:20:49,409
"You have so far exceeded
my expectation

1795
01:20:49,453 --> 01:20:51,150
of what is possible for love."

1796
01:20:53,718 --> 01:20:55,589
It was a beautiful moment,
and of course,

1797
01:20:55,633 --> 01:20:57,940
I assured Mallory
that I felt the same way.

1798
01:21:00,986 --> 01:21:02,553
I don't believe
that I called people.

1799
01:21:02,596 --> 01:21:05,643
I think what I did
was I posted on Facebook,

1800
01:21:05,686 --> 01:21:07,863
and I said,
"The doctors have said

1801
01:21:07,906 --> 01:21:11,257
that anybody that should be
here should come today."

1802
01:21:11,301 --> 01:21:13,085
And 30 people
got on a plane and came.

1803
01:21:13,129 --> 01:21:15,305
[heart monitor beeping]

1804
01:21:20,788 --> 01:21:22,529
[Uncle Danny] I just remember,
it was kind of a blur.

1805
01:21:22,573 --> 01:21:24,009
You know, it was late.

1806
01:21:24,053 --> 01:21:26,620
We went into some waiting room.
There was food.

1807
01:21:26,664 --> 01:21:28,622
There were people there
all around the table.

1808
01:21:29,449 --> 01:21:33,714
Mallory was in her room
down the hall.

1809
01:21:34,672 --> 01:21:36,717
[Jack] Things were getting
very scary, um.

1810
01:21:37,414 --> 01:21:39,851
but Diane was adamant
that we don't tell her

1811
01:21:39,895 --> 01:21:41,374
that she was dying.

1812
01:21:41,418 --> 01:21:43,246
And she wanted Mallory
to keep fighting

1813
01:21:43,289 --> 01:21:45,030
while we were stalling for time

1814
01:21:45,074 --> 01:21:47,772
to get that medicine
created and shipped to us.

1815
01:21:52,124 --> 01:21:53,734
[Diane] She knew
that Mark was fighting

1816
01:21:53,778 --> 01:21:55,823
for her life,
and she knew that we were

1817
01:21:55,867 --> 01:21:57,260
getting her the phage.

1818
01:21:57,303 --> 01:21:59,392
And I said to Mallory,

1819
01:21:59,436 --> 01:22:02,352
"I'm very grateful
that you allowed Dad to do this

1820
01:22:02,395 --> 01:22:05,964
because it's gonna save you,
and hopefully, it's gonna save

1821
01:22:06,008 --> 01:22:07,661
hundreds of thousands
of other lives."

1822
01:22:08,793 --> 01:22:10,316
[Dr. Pilewski]
The phages were, were prepared

1823
01:22:10,360 --> 01:22:11,752
and ready to go

1824
01:22:11,796 --> 01:22:13,929
but there were
transportation issues.

1825
01:22:14,320 --> 01:22:17,497
And our, our transplant
surgeon, Dr. D'Cunha,

1826
01:22:17,541 --> 01:22:21,849
managed to work with his people
who do transportation for organs

1827
01:22:21,893 --> 01:22:24,200
and finagle a way
to get the phages

1828
01:22:24,243 --> 01:22:27,420
transported here
as expeditiously as possible.

1829
01:22:27,464 --> 01:22:30,032
[helicopter whirring]

1830
01:22:30,075 --> 01:22:32,773
[man] Is this wild phages?
It is insane.

1831
01:22:32,817 --> 01:22:34,906
Come on, phages.

1832
01:22:34,950 --> 01:22:36,473
[woman] Oh, my God, I'm crying.
Oh, my God.

1833
01:22:36,516 --> 01:22:37,778
That's the batch.

1834
01:22:37,822 --> 01:22:40,085
That's nice work.

1835
01:22:40,129 --> 01:22:41,869
[man] [on video] All right, Mal.

1836
01:22:41,913 --> 01:22:44,568
[woman] [on video]
We are walking the phages

1837
01:22:44,611 --> 01:22:46,004
down the hall,

1838
01:22:46,048 --> 01:22:48,311
down the wall.
Here we are.

1839
01:22:48,354 --> 01:22:49,790
We're walking in.

1840
01:22:50,487 --> 01:22:52,358
These are the phages.

1841
01:22:52,402 --> 01:22:55,274
[Diane] [on video] Oh, my God.
Can I give you a hug?

1842
01:22:56,145 --> 01:22:58,582
Thank you so much.

1843
01:22:58,625 --> 01:22:59,931
Yeah, don't drop 'em.

1844
01:22:59,975 --> 01:23:01,628
[Diane] [on video]
What do we do?

1845
01:23:01,672 --> 01:23:02,673
[man] [on video] Yeah,
I'll hold them for now.

1846
01:23:02,716 --> 01:23:04,022
Thank you.[laughs]

1847
01:23:04,066 --> 01:23:05,676
[woman] [on video]
Don't drop 'em.

1848
01:23:05,719 --> 01:23:06,982
[Mark] The phages
were administered at,

1849
01:23:07,025 --> 01:23:08,722
at about six p.m.

1850
01:23:09,419 --> 01:23:15,599
One variety was given
into the, the right lung.

1851
01:23:17,514 --> 01:23:19,516
and the other one was given
in the left lung.

1852
01:23:21,083 --> 01:23:26,001
And then a microdose
was given intravenously.

1853
01:23:26,044 --> 01:23:28,655
[machine beeping]

1854
01:23:30,918 --> 01:23:32,311
[muted chatter]

1855
01:23:35,227 --> 01:23:39,101
We were planning to dose her
with them every 12 hours.

1856
01:23:39,710 --> 01:23:42,017
And the next morning,
when they were preparing

1857
01:23:42,060 --> 01:23:45,194
the second round of doses
for her,

1858
01:23:46,108 --> 01:23:49,807
we had a heart-to-heart
with the doctor who told us

1859
01:23:49,850 --> 01:23:52,418
that even if
we pulled Mallory back

1860
01:23:52,462 --> 01:23:54,203
from the brink of death here,

1861
01:23:54,855 --> 01:23:56,466
her blood oxygen
had been depressed

1862
01:23:56,509 --> 01:23:59,338
for so long she would suffer
permanent brain damage.

1863
01:23:59,382 --> 01:24:01,688
So I remember
being in the room with Mallory

1864
01:24:01,732 --> 01:24:04,604
and Diane came in
and she was teary and saying,

1865
01:24:04,648 --> 01:24:07,346
"It's not working.
It's not, it's not,

1866
01:24:08,043 --> 01:24:09,566
it's not happening."

1867
01:24:09,609 --> 01:24:13,483
[heart monitor beeping]

1868
01:24:13,526 --> 01:24:16,094
And it felt like
a knife through the chest.

1869
01:24:17,182 --> 01:24:18,879
Yeah, knowing
that we were gonna have to

1870
01:24:18,923 --> 01:24:20,751
take her
off life support, and...

1871
01:24:22,405 --> 01:24:24,059
I knew that's what she wanted.

1872
01:24:25,756 --> 01:24:27,497
[Mark] And we were all
touching Mallory,

1873
01:24:27,888 --> 01:24:29,977
holding her hand or feet,
rubbing her feet,

1874
01:24:30,021 --> 01:24:32,023
or touching her, her legs.

1875
01:24:32,067 --> 01:24:33,851
[sniffling]

1876
01:24:33,894 --> 01:24:34,939
And...

1877
01:24:37,202 --> 01:24:41,554
We just saw her pulse rate fall

1878
01:24:43,252 --> 01:24:46,298
and her respiration rate fall
and her blood pressure fall.

1879
01:24:46,342 --> 01:24:51,912
And then about
ten minutes to five, her,

1880
01:24:51,956 --> 01:24:53,610
her pulse stopped.

1881
01:24:55,220 --> 01:24:58,093
[slow piano notes playing]

1882
01:24:59,833 --> 01:25:02,532
[waves lashing]

1883
01:25:11,541 --> 01:25:14,500
[birds chirping]

1884
01:25:24,858 --> 01:25:27,078
We wanted to see
whether the phages

1885
01:25:27,122 --> 01:25:31,648
had reached their targets
and had started to work.

1886
01:25:32,344 --> 01:25:34,172
And the autopsy did confirm

1887
01:25:34,216 --> 01:25:36,696
that the phages
had already started

1888
01:25:36,740 --> 01:25:40,439
killing the B. cepacia germs
and multiplying the phage.

1889
01:25:41,962 --> 01:25:44,182
And Mallory's case

1890
01:25:44,617 --> 01:25:47,403
and the publicity
that we got for it

1891
01:25:47,446 --> 01:25:52,059
have sparked a resurgence
of interest in phage therapy,

1892
01:25:52,930 --> 01:25:55,802
especially for
cystic fibrosis patients,

1893
01:25:55,846 --> 01:25:58,457
and several dozen patients
have been treated,

1894
01:25:58,936 --> 01:26:01,982
and some lives have been saved.

1895
01:26:03,636 --> 01:26:05,464
Not all of them.

1896
01:26:05,508 --> 01:26:08,163
You know, a lot of them
got it too late, like Mallory.

1897
01:26:10,469 --> 01:26:15,170
And I would like to see
that timeframe moved up.

1898
01:26:21,219 --> 01:26:22,786
[Dr. Pilewski] We learn
from patients like Mallory

1899
01:26:22,829 --> 01:26:24,179
about what
we could do different.

1900
01:26:24,222 --> 01:26:27,182
We have, we have
this phage collaborative

1901
01:26:27,225 --> 01:26:31,186
going on right now,
encouraged by Mark and Diane.

1902
01:26:31,969 --> 01:26:33,623
So those efforts
will hopefully allow us

1903
01:26:33,666 --> 01:26:37,975
to get more patients
through the first year or two

1904
01:26:38,018 --> 01:26:40,412
after transplant
'cause that's really where

1905
01:26:40,456 --> 01:26:42,414
the biggest landmines are.

1906
01:26:43,285 --> 01:26:46,505
People get through the first
three, four, or five years

1907
01:26:46,549 --> 01:26:49,204
after transplant
without major complications,

1908
01:26:49,552 --> 01:26:53,251
most of those patients are
going to live ten, 15, 20 years.

1909
01:26:53,947 --> 01:26:55,949
So, that's our hope.

1910
01:26:58,256 --> 01:26:59,344
We'll get there.

1911
01:27:00,389 --> 01:27:03,087
[inhaling]

1912
01:27:09,441 --> 01:27:12,314
[mellow music playing]

1913
01:27:25,544 --> 01:27:28,373
[approaching footsteps]

1914
01:27:31,724 --> 01:27:33,073
[Diane] [voice-over]
When we moved to Pittsburgh

1915
01:27:33,117 --> 01:27:34,640
for the transplant

1916
01:27:34,684 --> 01:27:36,555
and she was afraid
she might not make it,

1917
01:27:36,599 --> 01:27:39,079
Mallory finally gave me
the password to her journal,

1918
01:27:39,558 --> 01:27:41,125
and told me not to read it

1919
01:27:41,168 --> 01:27:42,996
if she made it
through transplant,

1920
01:27:43,040 --> 01:27:44,650
but that if something
happened to her,

1921
01:27:44,694 --> 01:27:46,304
she wanted me to open it,

1922
01:27:46,348 --> 01:27:48,306
and there would be
instructions inside.

1923
01:27:48,350 --> 01:27:51,527
What I found was 2,500 pages

1924
01:27:51,570 --> 01:27:54,530
of her carefully recorded
thoughts over 10 years.

1925
01:27:54,573 --> 01:27:57,750
I also discovered
a treasure trove of audio.

1926
01:27:58,360 --> 01:28:01,232
She was very happy,
and she chose to live happy,

1927
01:28:01,276 --> 01:28:03,016
and that was her mantra.

1928
01:28:03,060 --> 01:28:05,454
But at the same time,
I think she suffered immensely,

1929
01:28:05,497 --> 01:28:07,325
and I don't think
anybody had any idea

1930
01:28:07,369 --> 01:28:10,459
of how deeply she suffered
until I read the journal.

1931
01:28:10,502 --> 01:28:13,157
And then I said,
"Wow, I missed this."

1932
01:28:14,637 --> 01:28:16,769
Going through a third transplant

1933
01:28:16,813 --> 01:28:24,037
during a pandemic like COVID-19
has been incredibly scary.

1934
01:28:24,081 --> 01:28:27,650
I was not able to have family
or friends with me at all.

1935
01:28:28,128 --> 01:28:31,044
I could only bring a few items
with me to the hospital.

1936
01:28:31,480 --> 01:28:36,485
And I chose to bring this book
because I just,

1937
01:28:36,528 --> 01:28:38,965
I see it, and I see strength.

1938
01:28:39,270 --> 01:28:41,098
And I also knew because
my family wasn't there,

1939
01:28:41,141 --> 01:28:45,668
I was gonna need something
to make me feel less lonely,

1940
01:28:45,711 --> 01:28:48,323
and that was Mallory's book.

1941
01:28:49,149 --> 01:28:52,065
[mellow music]

1942
01:28:58,420 --> 01:29:00,770
[keyboard keys clicking]

1943
01:29:03,729 --> 01:29:05,514
[Mark]
These are Mallory's words.

1944
01:29:06,732 --> 01:29:09,779
"I'm back in the hospital
thinking about what I want.

1945
01:29:09,822 --> 01:29:12,085
I want to wake up in the morning

1946
01:29:12,129 --> 01:29:14,087
and take a deep, full breath.

1947
01:29:14,958 --> 01:29:17,221
I want that breath
to fill me up,

1948
01:29:17,264 --> 01:29:19,832
to imbue me with joy and energy,

1949
01:29:19,876 --> 01:29:22,182
not to irritate or pain me

1950
01:29:22,226 --> 01:29:24,446
and set off a spasm of coughing.

1951
01:29:25,621 --> 01:29:27,710
I want to be able to do
the things that I dream of."

1952
01:29:27,753 --> 01:29:29,364
"That I dream of while I sleep.

1953
01:29:29,407 --> 01:29:31,409
Things that are
taxing in reality.

1954
01:29:31,453 --> 01:29:35,239
Hiking, running, biking,
swimming, diving, kicking,

1955
01:29:35,282 --> 01:29:40,026
screaming, dancing, laughing,
jumping, falling, leaping,

1956
01:29:40,070 --> 01:29:41,376
-soaring."
-[Caleigh] "Soaring.

1957
01:29:41,419 --> 01:29:42,812
I want to get to know
another person

1958
01:29:42,855 --> 01:29:45,249
without fearing
what they will think

1959
01:29:45,292 --> 01:29:48,252
when they truly understand
the way my body works.

1960
01:29:48,861 --> 01:29:51,429
I want to trust that my body
will be able to help me,

1961
01:29:51,473 --> 01:29:55,172
not hinder me,
in living out my dreams."

1962
01:29:55,781 --> 01:29:57,783
"I want to know
that when my closest friends

1963
01:29:57,827 --> 01:30:00,046
are sitting on the porch
at age 80,

1964
01:30:00,090 --> 01:30:01,874
I'll be sitting there
with them."

1965
01:30:01,918 --> 01:30:03,006
"I'll be sitting there
with them,

1966
01:30:03,049 --> 01:30:04,486
reminiscing, smiling,

1967
01:30:04,529 --> 01:30:06,662
weeping, talking,
drifting, chuckling."

1968
01:30:08,228 --> 01:30:11,406
[exhales]
"I want to fall in love.

1969
01:30:14,583 --> 01:30:16,933
[sniffles]

1970
01:30:16,976 --> 01:30:19,675
and have a relationship
that's reciprocal.

1971
01:30:20,458 --> 01:30:23,026
And not have to burden my love
with the task

1972
01:30:23,069 --> 01:30:25,855
of taking care of a spouse
who can't pull her own weight,

1973
01:30:25,898 --> 01:30:28,074
who's needy."

1974
01:30:28,118 --> 01:30:30,163
"I want to have a child
but more than that,

1975
01:30:30,207 --> 01:30:32,078
I want to hope to have a child

1976
01:30:32,122 --> 01:30:36,474
without the nagging worry that
the dream is entirely foolish.

1977
01:30:36,518 --> 01:30:37,780
And when I have this child,

1978
01:30:37,823 --> 01:30:39,651
I want to be able
to pick her up,

1979
01:30:39,695 --> 01:30:41,044
carry her around."

1980
01:30:41,087 --> 01:30:42,349
"Climb trees with her,

1981
01:30:42,393 --> 01:30:44,264
play with her in the jungle gym,

1982
01:30:45,222 --> 01:30:47,920
teach her how to swim,
dance with her in the kitchen,

1983
01:30:47,964 --> 01:30:49,879
show her
the most beautiful hikes,

1984
01:30:49,922 --> 01:30:52,359
be there to push her
into her first wave.

1985
01:30:53,491 --> 01:30:55,841
and keep up with her
fireball energy of youth."

1986
01:30:56,581 --> 01:30:58,714
[Maya] "I want to effect
change in the world.

1987
01:30:59,976 --> 01:31:03,370
I want my life goals not
to end as solely surviving.

1988
01:31:03,414 --> 01:31:05,416
I want to live largely,
[sniffles]

1989
01:31:05,460 --> 01:31:07,505
richly, vastly."

1990
01:31:07,549 --> 01:31:09,333
"Dynamically, lovingly,

1991
01:31:09,376 --> 01:31:12,423
graciously, eternally,
and ephemerally."

1992
01:31:13,250 --> 01:31:16,645
"I want to feel amazement
and wonder every day."

1993
01:31:16,688 --> 01:31:18,211
"I want to never lose sight

1994
01:31:18,255 --> 01:31:19,778
of my place
in the thread of humanity

1995
01:31:19,822 --> 01:31:21,388
and the fabric of the earth."

1996
01:31:21,432 --> 01:31:25,088
"In the palace
that is this universe."

1997
01:31:25,131 --> 01:31:27,743
"I want friendship,
happiness, humor."

1998
01:31:27,786 --> 01:31:30,049
"Laughter, lightheartedness."

1999
01:31:30,093 --> 01:31:32,530
"Small conquerable worries."

2000
01:31:32,574 --> 01:31:34,706
"To want these things is normal,

2001
01:31:34,750 --> 01:31:37,492
to expect them is dangerous."

2002
01:31:37,535 --> 01:31:38,884
"Do I have to abandon

2003
01:31:38,928 --> 01:31:40,712
my beautiful idea
of what life is?"

2004
01:31:40,756 --> 01:31:42,497
"Do I have to abandon
these fantasies

2005
01:31:42,540 --> 01:31:43,889
as possibilities for me,

2006
01:31:43,933 --> 01:31:45,848
to refashion my idea
of the future?"

2007
01:31:46,501 --> 01:31:48,154
"To settle for just surviving,

2008
01:31:48,198 --> 01:31:49,547
breath by breath?"

2009
01:31:49,591 --> 01:31:51,984
"Breath by breath,
one day at a time,

2010
01:31:52,028 --> 01:31:54,509
sacrificing the very idea
of dreams

2011
01:31:54,552 --> 01:31:56,554
to prevent disappointment.

2012
01:31:57,120 --> 01:32:00,210
Only if I allow disappointment
to crush my spirit.

2013
01:32:00,253 --> 01:32:01,646
I am happy today."

2014
01:32:03,561 --> 01:32:06,390
[waves lashing the shore]

2015
01:32:43,514 --> 01:32:46,212
["The Flower I've Become"
performed by Kalyna Raquel]

2016
01:33:05,101 --> 01:33:09,235
♪ When all my hopes seem gone

2017
01:33:09,279 --> 01:33:13,500
♪ Your love was always there

2018
01:33:13,544 --> 01:33:17,809
♪ I opened up in darkness

2019
01:33:17,853 --> 01:33:21,160
♪ And now I breathe the air

2020
01:33:26,557 --> 01:33:30,866
♪ You showed me love
Through rain ♪

2021
01:33:30,909 --> 01:33:35,261
♪ You showed me love
Through sun ♪

2022
01:33:35,305 --> 01:33:39,135
♪ But from the storm
I'm thankful ♪

2023
01:33:39,178 --> 01:33:43,443
♪ For the flower I've become

2024
01:33:43,487 --> 01:33:47,491
♪ For the flower I've become

2025
01:34:05,509 --> 01:34:09,687
♪ Without it Earth would dry

2026
01:34:09,731 --> 01:34:14,039
♪ The seed would not survive

2027
01:34:14,083 --> 01:34:18,391
♪ And I would never grow

2028
01:34:18,435 --> 01:34:22,744
♪ To see the break of light

2029
01:34:22,787 --> 01:34:27,009
♪ You showed me love
Through rain ♪

2030
01:34:27,052 --> 01:34:31,404
♪ You showed me love
Through sun ♪

2031
01:34:31,448 --> 01:34:35,321
♪ But from the storm
I'm thankful ♪

2032
01:34:35,365 --> 01:34:39,674
♪ For the flower I've become

2033
01:34:39,717 --> 01:34:43,982
♪ For the flower I've become

2034
01:34:44,026 --> 01:34:48,334
♪ For the flower I've become

2035
01:34:48,378 --> 01:34:52,251
♪ For the flower I've become

2036
01:35:10,269 --> 01:35:14,578
♪ The struggle brought me up

2037
01:35:14,621 --> 01:35:18,843
♪ And made my roots dig down

2038
01:35:18,887 --> 01:35:23,152
♪ And those who see my bloom

2039
01:35:23,195 --> 01:35:27,460
♪ See half of
What's in ground ♪

2040
01:35:27,504 --> 01:35:31,943
♪ So thank you for the rain

2041
01:35:31,987 --> 01:35:35,773
♪ And thank you for the sun