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[♪♪♪♪♪]
[keyboard keys clicking]
[♪♪♪♪♪]
[kids shouting playfully]
[Mallory] I'm not necessarily
the most fearful of death.
[kids playing]
[Mallory coughing]
[Mallory] but I do think
that when you leave people behind
that had fought so hard to keep you alive
and that have invested all of their energy
for years and years to keeping you alive
as long as possible,
I think that would be devastating.
So I think my biggest fear is that my parents would
have to deal with my death instead of the reverse.
[heart rate monitor beeping]
[woman] These are the phages.
[phone beeps]
[woman] [over phone] Just now,
I don't have too long to talk,
but if you get this message soon,
give me a call back. Okay.
[water bubbling]
[♪♪♪♪♪]
[man] [on video] Smile, Mallory!
Happy birthday, Mal.
Can I interview you?
How do you feel about your birthday party?
[on video] Good.
[man] [on video] You having a good time?
-[on video] Yeah. -And how does it feel
-to be three years old? -[on video] Good.
[Mallory] [voice-over] When I was three,
my mom was pregnant with her third child.
I was pushing to name her Chomperina
after my favorite character inThe Land Before Time.
But one day, my mom told us
that Chomperina wouldn't be coming to live with us.
Her doctors had told her to terminate the pregnancy.
My would-be younger sister had cystic fibrosis,
the number one genetic killer of children
in the United States.
[woman] [on video] Okay. One, two, three. Blow.
[Mallory] [voice-over] The doctors said it wouldn't be fair
to bring a child into this world,
knowing that it would suffer
and probably die within a few years.
The next day, I was tested for cystic fibrosis.
[Mark] We were just walking into a party
to celebrate the birth of a friend's son.
And the pager went off, because I had a pager,
and it said, it was 911, and it was a Cedars number,
and I was like, "Oh-oh, what's this?"
So we went upstairs into the bedroom and,
and called the genetic counselor.
At first she said, "We got the blood results back,
and Micah is perfectly all right,
but Mallory has cystic fibrosis."
I remember vividly noises coming out of my body.
I literally was about to pass out.
They had to carry me out of there.
Oh, I felt like my,
my daughter had just got a death sentence.
[on video] Since you are our close friends,
you know what this past year has been like for us.
It started when Dr. Ruth Cousineau,
who's here tonight and the best OB there is,
sent me to Dr. Larry Platt for a routine amnio.
He noticed a small spot he called an echogenic bowel,
which was eventually diagnosed as cystic fibrosis.
Everyone said I should terminate, period.
It was almost easy because all I heard was
what a terrible and deadly disease CF was.
But two weeks later, when Mallory was diagnosed,
I was told to be positive.
CF wasn't the disease it used to be.
Gene therapy would provide a cure.
Mallory could live a long life.
How was I to reconcile these contrasting pictures?
[coughs]
[Mallory] My mom actually wrote
a children's book about me, about cystic fibrosis,
called Mallory's 65 Roses.
And it's called that because a lot of kids
can't pronounce "cystic fibrosis"
and they pronounce it "65 roses".
We were looking for a resource
to explain to the kids, to Mallory, to Micah,
to her friends at school, to our friends.
[Mallory] So the book does a really good job
of explaining it.
They basically say with CF, you have thick, sticky mucus
that builds up in your lungs and digestive tract.
There's a defect in the system
that interferes with the ability for salt to move around.
And as a result, sticky mucus develops
any place that you have mucus.
So your sinuses, your pancreas, your lungs.
And she, they make the comparison
to having your shoe get stuck in gum
and you can't get it off.
The bacteria that other people
cough on you or that you pick up in the air
goes into your system,
and healthy lungs and healthy people flush it out.
But those with CF have that extra stickiness,
the bacteria gets stuck there.
And over time, those repeated infections destroy the lungs.
[Micah] Yeah, when I was a kid,
I didn't realize quite how serious it was.
And I knew she was sick.
I saw the hospitalizations and the treatments.
But I didn't know that it was fatal
until much older in my life.
And I think I was kind of shielded from that
for a long time.
[♪♪♪♪♪]
[Mallory] [voice-over] When I was born,
the life expectancy was only 18 years old.
[Mark] Uh, that was the median,
you know, so things could happen,
and you could die younger, maybe even much younger.
[Mallory] [voice-over] CF isn't a disease
that you can forget about until you get sick.
Its armies gain on me with each passing year.
[Diane] Anybody that lives
with cystic fibrosis knows that at some point,
the lungs are going to give out,
and the only option is transplant.
So it's something that you grow up with,
knowing someday you might need a transplant.
The one thing that her first CF doctor said
that I'll never forget
is that we would dance at Mallory's wedding
because they expected to have a cure
by the time she was an adult.
[lively chattering]
[Dr. Pornchai] When I first met her,
she was around nine years old,
and she's healthy.
I met Mallory in about 2015,
and she was about 22 years old at that time.
And she moved back to Los Angeles,
um, after finishing up college.
Yeah, when I first met Mallory and,
and her mother, Diane, um,
I was really struck by their level of insight.
They had clearly knew the landscape,
they knew the situation they were in.
[Mallory] [voice-over] People with CF,
when we get sick and end up in the hospital,
it's like our wings are broken and in need of repair.
When we ultimately do get back out
and get to fly again,
it might be lower and slower than others,
but we're gonna relish the feeling of soaring.
[Mallory coughing]
It's hard to see the children who struggle with breathing.
Take a straw and put it in your mouth
and then plug your nose and try to jog in place
and see what that feels like.
[Mallory] [voice-over] How often is it that people
walk down the street,
take a deep breath and think,
"Wow, that is amazing that I can do that."
Whenever I'm healthy enough to take a deep breath
without it hurting or making me cough,
it amazes me beyond belief.
The stuff I ask my patients to do
is so difficult.
You have to do these aggressive treatments
to your lungs every day, and you have to take
upwards of sometimes 20 to 30 pills a day
just to be able to eat something,
you know, just to be able to digest your food.
[Diane] [on video] You want to show me your hula dance, guys?
-[Micah] [on video] Yeah! -[Mallory] When I was three,
when I was diagnosed,
I started doing hours of chest percussion therapy
and breathing treatments every day.
[Mark] For the first year, that was my job,
percussion therapy.
And I sat with her for 24 minutes every morning
and pounded on her chest and back
in eight different postures.
And then I would come home in the evening
and do the same therapy at five or six o'clock at night,
and then I would go back to the office to work.
[Diane] And I refused
for the first year to do any treatments.
She would cry and I said, "I'm not doing it.
I'm not doing it. I'm not doing it."
I felt like a child beater.
Because if you don't hit the child hard enough,
you don't dislodge the mucus.
She would cry during the treatments
and say, "Daddy, stop. Please stop.
It's too hard."
The big breakthrough was this vest to shake your lungs.
[device humming]
[Mark] [on video] Hi, Mallory.
[voice shaking] [on video] Hi.
[Mark] [on video] Can you explain what the two parts
of the treatment are, please?
[voice shaking] [on video] What two parts?
[Mark] [on video] The two machines.
[voice shaking] [on video] This one's the mask.
And this one's the vest.
[Mark] [on video] And, and what's that big machine there?
[voice shaking] [on video] This is my vest.
[Mark] [on video] That's the vest machine?
-[on video] Yeah. -[Mark] And how often do you
have to do your treatment, honey?
[voice shaking] [on video] Two times a day.
[Mark] [on video] Really?
-Do you like it? -[on video] No.
[Mark] [on video] Why don't you like it, sweetheart?
[voice shaking] [on video] It hurts.
[Micah] You know, it was always what we were told
was just like if Mallory does these treatments
that she'll be healthy.
And so I thought that "Oh, she's so great
about doing her treatments
that she's always going to be healthy."
So seeing the, the treatments didn't cause
the same kind of emotional reaction for me.
She always had to be doing her treatments
in the living room, um,
and she would always pick the movie.
Um, there's a lot of times I spent
watching the same movies over and over again
until we memorized every line.
[water splashing]
[kids shouting in glee]
[Mallory] [voice-over] It was 1998 in Maui.
Before this trip, I was always too scared
to put my head underwater in the ocean.
That day, Micah asked, "Will you come with us?"
My dad convinced me to put my head underwater
with him and Micah for the first time.
From the first wave I dove under,
the underwater world felt like someplace
I was meant to be, a place I needed to be.
I'd dive down to the bottom
and grip onto the sand with all my six-year-old might
and stay just long enough to hear the whales.
And then I'd emerge coughing and sputtering
and blowing the saltwater out my nose.
[gentle piano notes]
And when we got out of the water
two hours later, my parents noticed something
I wasn't even conscious of at the time,
that I was coughing more than usual,
a rattling, wet cough.
But by the end of the trip,
after being out in the really deep every day,
I wasn't coughing at all. I was symptom-free.
We didn't understand why at the time,
but we kept going back
because there was something about being there
that just seemed to make me healthy.
[Micah] That was always very much like a reset.
Kind of just time to rest and relax
and help Mallory get back to health.
[gentle piano music]
[Diane] The first time we took Mallory to Hawaii,
I think she was three years old, although I went
when I was pregnant with her.
So her first official trip was when I was pregnant with her.
But as soon as we landed, all of a sudden,
she wasn't coughing,
her nose wasn't running,
and she just seemed healthier, and she felt better,
and her breathing was less labored.
[Mallory] [voice-over] In the early 1990s,
researchers figured out that surfers in Australia with CF
lived 10 years longer than other patients.
They discovered that saltwater actually hydrates
the thick sticky mucus in the lungs
we spend hours a day trying to get out,
which makes it easier to keep the lungs clear of infection.
Surfing and being in the ocean
is the number one thing that separates me from my disease
and makes me feel like it's not present.
[Mark] [on video] I think your mask is over.
Can you show me how you take it off and turn it off?
[device humming]
Is this your last treatment in Hawaii?
[voice shaking] [on video] Yeah.
[Mark] [on video] Did you have the best trip ever?
-[on video] No. -[Mark] [on video] Why?
[voice shaking] [on video] Because...
[Mark] [on video] Look at, look at, look at me
when you're talking, honey.
[on video] Because I like doing hula dances
and I didn't get to do hula.
[Hawaiian-style music playing]
Every playdate started with treatment,
and it was oftentimes mostly at her house.
And we would sit there while she did it.
[Talia] Yeah. I was never allowed to watch TV as a kid.
But Mallory could always watch TV during treatments.
So I would love going over there.
[Mallory] Having a disease
that limits my ability to socialize in certain ways,
I ended up ultimately with a much stronger group of friends
because they're the friends that I know are there
when I'm in the ICU and can't get out of bed.
And they're there when we're playing volleyball for hours
and surfing and having a great time.
I think all of us,
whenever we would go over, it was something different.
We didn't really understand what it was,
so we would always be curious.
I did try on the vest, yeah. And I thought it was really fun.
And I remember saying that to her
and she would say, you know, "No, it's not fun."
[Mark] She would often have a friend over
while she was doing it.
And if you're talking, you're not breathing deep,
so that she wouldn't get the medicine
and we would have to scold her for that.
You know, when you come home after a really long day,
the last thing you want to do is do treatment.
[Mallory] [voice-over] I used to complain to my parents
about having CF.
[on video] Why do I even have to do this?
When she was nine, she came home one day,
and she said she wasn't going to do treatment anymore.
And announced her intention not to ever do it again.
[Mallory] [voice-over] And stomp my feet and say,
"It's not fair. I don't deserve this.
Why do I have to deal with this? It's too hard."
And Diane worked her over.
[Diane] I called Mark and I said,
"Mark, I've tried bribing her, cajoling.
Everything under the sun, and she won't do it."
I couldn't get her to budge.
[Mallory] [voice-over] It's not fair. It's too hard.
[Diane] I asked him to come home from work.
And he said to her, "Mallory.
We're not asking you to do the treatment
so that you'll feel better.
We're asking you to do the treatment
so you don't get sick and die.
And if you don't do them, you will get sick and die."
And she burst into tears, leapt up from the table,
and went into her room, and slammed the door.
Twice.
And didn't speak to us for three days.
For her to have even had one day
of that sort of negative emotion kills me.
And she asked me years later,
well, did I have to be so brutally honest?
And I told her that sometimes honesty is the only arrow
you have left in your quiver.
[Diane] That's when she started
writing in a diary for the first time.
And that's, um, when I think she really began to understand.
[Mallory] [voice-over] The sinking and undeniable reality
of my mortality.
Null and void. Erased and gone.
[pencil scratching]
My mantra was "No pity party."
I really had an attitude and kept the tone in the house
that we live for the moment.
There was never, ever one time, a conversation
about her life being cut short.
She would sometimes bring it up and I would figure a way
to not go there, to that dark, negative place.
Diane was very aware of the prognosis.
There were times when I would call her
and sense in her voice
something was wrong, and just go over.
It was just she, she.
she was open with what was going on with Mallory,
because it was a concern.
And I think she understood the nature of a village
in helping but not open with,
with what it cost her, personally.
[♪♪♪♪♪]
[keyboard keys clicking]
[Mallory] [voice-over] It was 2004 in Los Angeles.
It was the day before I was set to start seventh grade.
And my lung function was 90 percent.
My mom's phone rang.
"Hello?" she said.
She was silent for a little while.
I know her many faces well enough
that I knew something was really, really wrong.
Finally, she said, "Are you absolutely sure?
What does this mean? Should we come right now?"
She said, "Mal, that was Dr. Pornchai.
Your sputum culture results came back. You have..."
And she just looked at me because she can't say it.
We were both silent as we got in the car
and drove to the hospital.
[Diane] That hospitalization,
they told us that she had cepacia.
The doctor at the time was Dr. Pornchai.
[Mallory] [voice-over] In a low voice
and his thick Thai accent, he said, "Mallory."
[Dr. Pornchai] I told her, "Mallory,
this is not a good germ,
uh, it's the germ that we never want any CF patient to have."
He said, "This is a major step down
and her, her, her life is going to get much harder,
and her treatments are going to become more rigorous."
[Mallory] [voice-over] I really had never seen her
react this way to any piece of news about anything.
At that time, uh, I don't know
what it's going to be, how it's going to be,
but we just have to monitor her closely.
[Mallory] [voice-over] A lot of whispering took place
while I slept, tossing and turning,
coughing with a force and depth I hadn't known before.
[coughing]
We found out that day
that I was colonized with Burkholderia cenocepacia,
otherwise known as B. cepacia.
It's the deadliest strain
of the deadliest bacterial infection known to CF lungs.
[Mark] B. cepacia is found in onion skins,
so all of us are exposed to it all the time.
But it doesn't,
it doesn't affect you if your immune system is healthy.
It's very dangerous for burn victims
and dangerous for cystic fibrosis patients.
It's harder for patients with B. cepacia
to be treated each time
because this germ is very resistant to antibiotics.
[Mallory] [voice-over] I had just returned home
a couple of weeks before from summer camp.
At camp, in between making friends
and having the time of my life, I skimped on treatments.
I invited friends to hang out with me while I did them
and talked throughout the entire thing,
something my mom would never allow at home.
And she has lost weight.
[Mallory] [voice-over] I ate so little
that I lost nine pounds in one month from a frame
my doctors were already trying to fatten up constantly.
We knew that her life was going to be much harder
and shorter.
[Mallory] [voice-over] How could they explain
to an 11-year-old child
that the trajectory of her entire future has changed
because of one virulent and highly resistant pathogen,
that her health could rapidly deteriorate at any time,
that she could never be around other patients with CF
because of the danger
of transmitting the infection to them.
I didn't know I'd have to be hospitalized
multiple weeks a year, or that I'd have to rotate
through rounds of powerful IV antibiotics
that I'd be resistant to but use anyway
because there were no other options.
I didn't know at the time
it meant I might not be able to get a lung transplant.
That once I reached end-stage disease,
I wouldn't get the second chance at life
I'd always expected and taken for granted.
[heart monitor beeping]
[Mark] When Mallory was still in a crib,
I used to climb into the crib with her
and read a book until she fell asleep.
And then one time, Diane came in,
and I was sound asleep in her crib,
and Mallory was still sitting up turning the pages,
[chuckling] looking at the pictures.
I think she was maybe two years old then, so.
When she was in the hospital,
I slept overnight at the hospital with her every night.
All throughout her childhood and, and school years.
[song playing]
[Uncle Danny] When I think about Mark,
there's this engine that's trying to figure out,
what can we do? What can we do?
What can we do? And this very sad father.
[song playing]
[Mark] [voice-over] I read a lot.
I kept up on research into cystic fibrosis.
And at the time, they were very hopeful
that gene therapy would produce a cure soon,
within a matter of, say, five years.
This was a hope that all cystic fibrosis parents
at the time had, and it was a false hope.
[keyboard keys clicking]
[Gaby] The amount of research he does,
something would come out and he'd be on top of it.
Mark and Diane, they are very, very involved.
They know everything and they ask every question
that you, you could, could imagine.
[Mark] Mallory's case wasn't something
that you could treat with, with textbook remedies.
It did, it really did require
thinking out of the box.
[Diane] [voice-over] Mark really did all the research
and knew all the technical stuff.
I was social, medical appointments, fundraising.
The question with Diane is, where does Diane
find the strength to do anything that Diane does?
I mean, she just has boundless energy.
I think it's a combination of boundless energy,
and, frankly, a complete unwillingness to deal
with anything that's sad that propels that forward,
and so she just powers through it.
[on video] Don't worry, I'm not gonna sing.
-[laughter] -[on video] Come here.
She started doing the fundraisers.
And they'd started Mallory's Gardenevery year.
[Diane] When she was three,
she was into patent leather shoes and party dresses.
But when I came to understand that it was all about sports,
I threw away her party shoes, took away all the dresses,
and made her into a tomboy,
so she didn't really have much choice.
I mean, you know, the ship reflects its captain, right?
And I was like, "This is what it's going to be about.
Getting that mucus out of your lungs,
however we have to do it."
[Diane] [on video] Yeah. Yeah.
I'm just showing the feast that we have. Ugh.
[woman] [on video] Thank you, Diane.
I was never a cook. I hated to cook.
But I understood early on
that nutrition was critically important as a form of medicine.
And so I made it my mission to cook and make sure
she was always eating.
Diane would always be the one to text me to hang out
and not Mallory.
That's what she did with everybody in Mallory's life.
She brought them in
and brought them into her life as well.
I did things that enabled her
to be more engaged in her day-to-day life.
You're expected to clean
your nebulizer, sterilize your gear,
prep your medicine boxes with the pills,
schedule your appointments,
fight with the insurance company,
pick up the meds, go to the doctor's appointments,
go to all the ancillary appointments
for all the other specialists.
How can one person do what she does,
but I mean, she does enough for three people.
Her MO is just to go, go, go and squeeze, you know,
every minute out of life.
[Mark] [on video] Video is on. Let's go, Mallory, let's go.
Yoo-hoo.
-Smile, one, two, three. -[camera clicks]
[on video] One, two, three. Let me try another one.
-One, two, three. -One, two, three.
So she was kind of like Mallory's life admin
and also mother and also, like caretaker all in one.
Um, and also, all of our friends joke
that she is, we call her the "wingmom."
And she would just shamelessly try to pick up,
in a non-creepy way, but pick up men
for like Mallory or her friends to date.
Yes. Well, one of the things that I felt was really important
was that my kids talk to me about boys and girls.
And so, way before she ever would have been
interested in boys, I started talking about it.
And I would say, "CBA."
And then the girls would say, "What's that?"
And then I'd say, "Cute boy alert."
And then they would just all giggle and turn bright red.
[Gaby] When you're out, and you're 16,
and you're eating lunch with your friends,
and then the mom is like, "Cute boy alert,
cute boy alert," it's so embarrassing.
It's, it's an insane thing to do.
[Mallory and Gaby] [on video] ♪ Oh, Garrett
You're gorgeous ♪
[laughing]
[Gaby] She did all of that before me.
The first kiss, first boyfriend.
[Mark] I was never troubled by that.
I, I always wanted Mallory to experience
all of the joys of life, in, including love and romance.
And I was happy for her.
She, she picked really good boyfriends.
She had, she had a number of very, very nice boyfriends.
Mallory was the first friend from home
that I came out to,
and it immediately went from like,
"I have to tell you a big secret"
to it's just a normal, everyday,
best friend conversation around, you know,
"How are you going to date?"
[Gaby] Boys liked her
because she wouldn't sweat the small stuff.
She had this kind of bigger picture
that takes us a lot of years to understand that mentality,
that the little things shouldn't get us riled up.
[Mallory] I don't feel that I'm
as easily bothered by daily irritations.
And I think that's in part because
I've had life and death things to worry about.
Um. but on the other hand,
I don't think that I'm unbreakable,
and I definitely feel like my body is fragile,
even if my spirit is very strong.
Mallory did such a great job
of kind of separating her treatments
and her hospital visits from her lived experience in school
and she was, she kind of set up,
set a bar so high for herself
in terms of academic performance
and athletic performance that I think her teachers and,
to some extent her friends kind of
held her to that bar.
[Diane] I was worried about what she was really thinking.
She was so perfect, the perfect student,
perfect friend, perfect daughter.
Perfect everything.
I knew that she had been writing
because she was always writing on that computer.
But because I hadn't ever seen it,
I didn't know what was in there.
And I used to try to break into it,
but I could never ever.
[Mallory] [voice-over] "But you look so healthy."
They see tall, they see strong,
they see clear eyes and freckles and long hair.
People seek denial, reassurance, and safety in my appearance.
They see a "picture of health," as they say.
A student, a friend, a volleyball player,
a swimmer, a girl who laughs when something is funny
and can carry a conversation, and proves her stability
with a thoroughly kempt and normal exterior.
But looks are deceiving.
[Mallory coughing]
[ocean rumbling]
Most days, she looked pretty healthy.
You know, she'd go to swim practice,
she'd go to volleyball practice.
Um, you know, she would do all those things.
But then, you know, when she got sick,
she was really sick,
and she was in the hospital for two weeks.
I met Mallory when, uh.
so I coached Micah, her older brother.
So when Micah was a freshman, Mallory, I think,
was in seventh grade, maybe eighth grade.
Pretty much every sport she played, she,
she took to pretty quickly, you know.
She's tall, she was,
I mean, when she was a freshman, she wasn't six foot
but by the time she graduated, she was six foot.
She's, you know, lean, and you know, had a good arm.
When someone first told me,
"Oh, you know, Mallory has cystic fibrosis,"
I, I thought, "Oh, that's just kind of a nuisance disease."
I had no idea it was, it was deadly.
And she didn't, she didn't put that out either.
Once Diane called me kind of in a panic, I was at school,
and she said, "Hey, Mallory's sick.
Can you go find her for me?"
She's on the front lawn at Beverly.
She had coughed up blood.
Hemoptysis is when you cough up blood
and it can be very mild, a little bit,
and it can be massive, which they count
as 250 CCs of blood in a 24-hour period.
So I went looking for her.
She'd coughed into the, into the grass
and there was a spot of blood in the grass.
[girls chanting]
[Mallory] When I'm sick,
when there's a boom in the cenocepacia population
in my lungs, I lash out. Not me but my lungs.
They have to do something to get the infectious agents out.
They have to rebel,
or the airways that still function
will go the way of their brethren
and blacken, deaden, fail.
So the airways rupture and there's an outpouring of blood,
bright fire-engine red, sticky blood
that spills up my throat like a waterfall,
traveling inexplicably against gravity.
It explodes up like an erupting volcano
and everyone else gets to run away,
except I can't.
Because I am the volcano.
-[beeps] -[Mallory coughing]
[Diane] [on video] Oh, my Lord.
[Mallory] Maybe more.
[Mallory coughing]
[man] [on video] Cough it up.
[Mallory coughing]
[Mallory spits]
[heart monitor beeping]
[Mallory] It was the spring
of my senior year of high school
and my lung function was down to 60 percent
from my then-baseline of 75 percent.
I was also 15 pounds underweight.
A few months of disordered eating
was enough to give my B. cepacia infection
the upper hand,
and permanently alter the trajectory of my health.
High school was really the first time
that I got to experience Mallory
going from being extremely healthy, you know,
healthy-seeming one day and, you know,
killing it in a, in a water polo game
or a volleyball game,
and then she would throw up blood
and then be out for three weeks.
[Mallory] I was in the hospital
for a triple-threat cocktail of IV antibiotics,
four chest percussion treatments a day,
and 2,000 calories of pure milky fat
pumped into my veins daily through my central line.
I'd been battling my B. cepacia for six years at this point.
And that day, I was losing.
[Mark] One of the things that happens
with B. cepacia in cystic fibrosis lungs
is it develops antibacterial resistance.
After every antibiotic, three of them, four of them,
her lung function is nothing.
I was to tell Diane and also Mallory
that the germ is very resistant
to almost all antibiotics at that time.
And remember, there's only one and a half antibiotic
that was sensitive to this B. cepacia.
[Mallory] I woke up on my eighth day
in the hospital to a knock on the door.
It was Dr. Pornchai.
He said, "Mallory, your weight has dropped yet again today,
and your white blood count has climbed to 19,000."
Dr. Pornchai was running out of ideas for what to do.
And so, I did bronchoscopy to try to clean her lung, get,
get the secretion out of her lungs
as much as I could.
[Mallory] As I recovered from anesthesia,
my body started shaking violently and erratically
as my temperature rocketed to 106 degrees.
I had sepsis, an infection in my blood,
and the infection in my lungs was taking over.
It was wreaking havoc on my body.
We didn't know if we could fight it any longer.
She was not doing that well.
She has had a fever, high fever, and...
[Mallory] I struggled against five nurses
as they held my convulsing limbs down
and covered me with ice packs and cold towels.
We thought I had something called cepacia syndrome,
which is when people who are infected
with the bacteria B. cepacia
begin to go into a period of rapid decline,
a progressive pneumonia
that usually leads to death within weeks.
[heart monitor beeping]
[Dr. Pornchai] At that time, I just,
we, we did everything, but I, I told the family
that this B. cepacia
is the germ that could, could kill Mallory.
[heart monitor beeping]
[Mallory] It took a few more weeks in the hospital,
and a few months of home IV antibiotics.
But eventually, my fever broke.
[cheers and applause]
[on video] [coughs] We are reminded
of how ephemeral life is and of how quickly it all rushes by.
This is the first day of the rest of our lives.
The first day in which we get to decide
what we want for ourselves, and how we are going to get it.
Take advantage of the freedom you have earned
and use it wisely.
[graduates cheering]
[♪♪♪♪♪]
[Diane] I was very nervous. I didn't want her to go.
Mark was very much in favor of her going to Stanford.
He thought it was the right school for her,
and I called my brother,
and I knew that he was there and that helped.
But was it my first choice?
No.
No, I would have kept her 10 minutes away at UCLA.
[Mallory] My freshman year,
I was on a clinical trial drug that was amazing.
Um, it kept my lung function very stable,
and I was actually not hospitalized for 16 months,
which was the longest that I had been
without a hospitalization since I was 10.
[Tyler] I was actually her RA.
Right off the bat, we became friends,
and Diane was obviously buzzing around as well.
And one of the first things that Diane was looking for
when she came to the dorm
was just like a closet to store medical equipment.
She kind of found me.
We just found like a,
basically a broom closet and emptied it out,
gave her the key.
[Mallory] I took over all of the aspects
of my own health care, managing my prescriptions,
talking to insurance,
making my own doctor's appointments,
going to the doctor alone,
going to the ER alone, all that kind of stuff.
Um, and so it was a very abrupt switch
from pediatric care to adult care,
but I was very ready for it, and I liked having that,
that level of control.
You know, it's just my good fortune
I got assigned her as a frosh advisee.
I remember being struck by it.
You know, you get a letter that they wrote.
It cracked me up.
It was, "I'm hoping to live abroad.
I speak Spanish
but I'm also very interested in New Zealand.
I think that I want to do something in the environment."
As I was reading further in it, it mentioned very briefly
that she also had cystic fibrosis.
And I mean, I remember this literally,
I thought, "I guess I misunderstood
what cystic fibrosis is."
They wanted to put her in a single room.
She said, "No."
Mallory wanted to have people in our room a lot, um,
and so we kept our door open. People would come in and out.
[on video] You're listening to Green Grid Radio
on KZSU Stanford 90.1 FM.
[Mallory] [voice-over] We would go to yoga.
We went to brunch a lot. We went to parties.
It was a pretty typical college experience.
She just wanted to not be defined by her illness.
[Charlotte] I think Mallory was aware
of wasting time, and diligent about not wasting time.
And that applied to almost everything she did.
She did it full throttle.
She burned very bright.
I used to tell her, "I wish you didn't burn so bright,
because bright bulbs burn out faster."
[Prof. McConnell] I met Mallory when she was
just starting her sophomore year.
Stanford has a program called Sophomore College
where I teach a course on conservation photography.
[Diane] She applied to and was accepted to a program
that sent her to school a month before.
And she didn't want me to take her up.
She wanted to do it on her own. And I argued with her
and ultimately let her win that argument.
[Prof. McConnell] Many students sort of go through
a journey of discovery, which is exciting.
But at the same time, they're doing that
in the context of academically really intense courses.
[Diane] She landed, they hit the ground running
with the program, and never set up her room properly.
Never got a chance to do all of her treatments.
Hi, Mom.
[Mark] So this is her new dorm room.
-Hey, can I have--? -This is my...
-that's my desk over there. -[girl 1] Hi.
[girl 2] Hi.
[Mark] Okay, let's go in the bedroom.
[Mallory] Yeah, this is the bedroom.
Very messy.
-Which one's yours, by the way? - This one.
-[Mark] Oh, the blue one. -[Mallory chuckles]
Anything else you want to say?
That's it.
Can you tell your mom how you miss her?
-I miss you, Mom. -[Mark laughs]
[Diane] I got a phone call.
She had had a massive bout of hemoptysis.
She ended up in the hospital. I immediately flew up.
You only had two treatments yesterday.
You went 12 hours, nine hours without a treatment.
-Doesn't affect my lungs. -You didn't sleep.
-That doesn't affect it. -[Diane] I don't agree.
[Mallory] Mom, it's not your lungs.
-How would you have any idea? -[Diane] Sweetheart.
-I think you... -You've asked the doctors
-[Diane] Let me just say... -[Mallory] Just listen to me.
You've asked them time and time again,
"Will skipping one treatment affect her lung function?"
-And they said no. -But you didn't skip one.
You skipped a few this week and you slept at Danny's...
-I skipped only one this week. -[Diane] No.
I'm telling you you're wrong, and you need to listen to me
because it's my body, it's my lungs, I know what's going on.
[Diane] Mallory's doctors thought
this exacerbation had been caused by ataluren.
They pulled her from the trial. It was heartbreaking.
When they took her off the drug,
she got much worse, and then she never really recovered.
[Mallory] [voice-over] I woke up every morning in a fog.
[coughs] Every day, I lost a little bit more hope.
And every day, I started to change my perception
of my own self a little bit more.
Going from a healthy, dynamic,
outgoing, competent young person
to a sickly person with no hope, no dreams.
Seeing her in a hospital bed the first few times was jarring.
I had never spent that much time in a hospital.
It was like, "Wow, she's like in the hospital for a long time,
she's staying overnight, um,
she's hooked up to all these things."
[Mallory] [voice-over] I had pulmonary embolisms.
I had gallstones. I was coughing up blood.
Everything seemed to be out of my control,
and I didn't know what to do.
I remember there was one period of time
when she had, uh, an IV that she had,
she took with her everywhere she went,
and she called it, I think she called it "Sexy Pete."
She just had a good spirit about everything.
She just, she always seemed happy.
[Maya] One of the things that she really brought to us
was positivity and light.
She wanted still to be the person
who her friends were going to
about their comparatively minuscule problems.
And I think that I took that at face value too much.
I just feel like I didn't ask enough questions,
or I didn't push enough, um,
to really understand how she was feeling.
She was always smiling, and she never let anybody
really know how much she suffered.
She, you know, took out her opinions
and her feelings on her journal clearly,
and then tried to just live a happy life
and pretend that everything was okay.
[Mallory] I feel like it's very difficult
for people to understand what's really going on
and how every single decision that I make
has a life-or-death significance to it.
Um, and that's something that I don't want to convey
because I don't want people looking at me,
and pitying me or being scared that I'm going to drop dead
or some, anything like that.
Mallory and I met at Stanford Hospital.
We were rooming in the rooms next to each other.
Stanford was like, a lot of times, my first home
because I was there more than I was at home.
One of the respiratory therapists said,
"There's this girl that's in the room next to you,
and she's around the same age.
And if you want, I'll ask her if she wants to meet you."
And then after that, Mallory Facebooked me
and we started talking on Facebook.
It was very virtual. [chuckles]
[Dr. Eshaghian] We isolate cystic fibrosis patients
from each other, and recommend that they don't
stay within six feet of each other.
I think that's part of what makes this disease so isolating
when you're living with it.
You know, there's no summer camp for kids with CF
like there is for kids with diabetes,
because they could cough on each other
and transmit bacteria into each other's lungs.
I definitely think that I can
talk to people with cystic fibrosis
in a way that I can't talk to other people.
People with cystic fibrosis can talk very bluntly to each other.
[phone text notification]
[Caleigh] And then, with cystic fibrosis,
my experience has been like you're talking
and then the people just start to not talk
as often to you, and start to not answer.
And, um, it's because people get too sick,
and they can't keep up,
and then it's like radio silence.
[Mallory] There's a lot of grieving.
There's grieving for all of the friends that I have with CF,
for the things that they're going through,
whether they're dying,
or whether they're getting transplants,
or whether they're waiting for a transplant
or just getting sicker.
Cystic fibrosis really isn't an individual disease.
Um, it's a family and community disease
in the sense that when you're sick,
your family aches.
When you're sick, your friends ache,
and the web kind of goes on.
[Mallory] [voice-over] It's very difficult for me
to see other people suffering.
It's easier for me to feel like I'm suffering
than to see other people that I care about suffering.
I'd been in the hospital five times,
just that school year.
It seemed like every organ system of my body
had suffered abuse.
I was in a really dark place
and for the first time,
I was diagnosed with depression.
[keyboard keys clicking]
[Mallory] [voice-over] I think we have all these second chances
and can always get to our dreams like a phoenix,
venerable and beautiful
and always rising above the odds.
A burning bird turning into ash and then regenerating.
And I always have this feeling
that other people get to live that way
with their own bodies.
They'll pull foot 342 all-nighters in college,
eat trash, drink booze, and stress always
and live like they're going to die young.
But that's exactly what they're not doing.
And like nothing they do now is going to change that.
And for most of them, they're probably right.
I don't sleep tonight.
I'm in the hospital two days later.
And I'm never gaining it back,
and next year, when I can't walk up a flight of stairs anymore,
I'm cursing myself and saying...
What if I just..."
I'm a bird and my choices might lead me to burn
but I don't get to rise up untainted,
ever glorious, flying freely.
[somber music]
It was 2012 in May, my sophomore year of college.
My lung function was 50 percent.
One day in the middle of this Maui trip,
I woke up and everything felt heavy.
My body felt heavy, my head felt heavy,
my heart felt heavy.
Driving to the beach,
I had a hard time looking at the sun.
The day was too bright, the sky too blue.
When I got there, I went straight for the ocean
and submerged underwater,
trying to hold my breath as long as I could,
so I could stay there
because it was the only place where the pieces of myself
came close to coming back together again.
I was thinking about mortality
and disease progression and acceleration.
And I felt helpless and vulnerable and broken.
I started to cry underwater, and the salty tears
were mingling with the saltwater of the ocean,
and everything was clear and blue and quiet,
and I was completely alone.
[water bubbling]
But then I wasn't.
This honu, this green sea turtle swam up.
And I was probably imagining this,
but it felt like it was looking at me.
Not just looking at me, but really seeing me.
And I looked back at this creature with its brown shell
and its cracked skin and its large, dark eyes.
And I'm not a very spiritual person generally,
but I thought to myself
that it had come along at that moment for a reason.
My soul felt endangered at the time
by the threats to my body.
And that turtle made me see that I did have the strength
to ride through the turbulence of my disease with grace.
[crickets chirping]
[Micah] I think she came to accepting
the reality of like, what she was,
the hand that she was dealt in life,
and I think she really made it her mission not to,
not to let it prevent her from, you know,
living a normal life like whatever way she could.
[♪♪♪♪♪]
[Mallory] [voice-over] Mallory Smith is a student
at Stanford with an unusual past.
She's going to tell you two stories
that don't seem to have anything to do with each other.
But be patient.
She'll walk you through a story of DNA and destruction,
colonization, and conservation of the body and the biome.
[Prof. McConnell] She enrolled in a year-long program,
and it's called the Senior Reflection.
She wanted to take her own experiences with CF,
her own sense of stewardship over her own body,
and make a parallel with our stewardship
for the planet and for conservation.
It was clear that she's someone who thinks through writing
and then when she read those works in her podcast,
hearing her voice bring all those words to life
was just incredibly moving.
[Mallory] [voice-over] My lungs are an ecosystem
forever altered, but the stakes are clear.
If I don't step up,
this fragile island that is my body
will drown under the rising sea of green mucus and disappear.
Null and void, erased and gone.
The Hawaiian Islands have experienced abuse
and destruction from the tallest mountain peak
to the deepest part of the ocean.
But for many people who care about Hawaii,
there's never been more hope, more promise, more empowerment.
Many native and local communities
are rallying to fight for the future health
of the islands.
♪ Don't go away from me
[Mallory] [voice-over] Even though I live today,
in objectively worse health standing than ever
with a lung function of about 40 percent,
I've never felt more hopeful, more resilient, more empowered.
I never asked to have CF
or to be colonized with B. cepacia.
It's not my fault that both my parents were carriers
of a cystic fibrosis
transmembrane regulator mutation,
and that I was blessed to get both recessive alleles.
But that doesn't absolve me of the responsibility
to fight this disease.
Fight it with everything I have every day.
I didn't ask for illness, but I own it
because if I don't, no one else will.
♪ But remember no news Is good news ♪
♪ And the good news is I love you ♪
[Diane] [on video] Are you cooking?
-[on video] Is this a video? -[Diane] [on video] Yeah.
[on video] I'm cooking food and I'm eating it too.
[Diane] [on video] Whooh.
[Mallory] Salmon, some salad, a lot of ricey carbs.
[Diane] [on video] Ricey carbs.
If I had heard from somebody
that right after college, I'd be living in LA,
I would have said, "No way." Um, but here I am.
She really wanted to go to Hawaii.
That was her plan.
And because of the hemoptysis, they said, "No."
Then she thought, "I can't live in Hawaii,
but I can live in Manhattan Beach,
and have a dog." And so she did.
[Mallory] With cystic fibrosis,
you're constantly toeing the line between...
acceptance and fighting back.
The common wisdom is that you should always be fighting
and always dream big.
But if you live like that always,
and you have a very serious illness,
you're just going to be disappointed
day after day after day.
And so, I really feel like
it's a balance between striving for more
and being happy with what you have.
[Susan Gottlieb] It was hard to believe
that she was so young and, and her work ethic was,
I mean, it was just incredible.
[Mallory] I had always held on to this idea
that I was going to work in sustainable development,
and I was going to travel.
And then one day, I just had to accept
that that wasn't a realistic thing for me to do.
Now, I'm very happy as a writer,
as a freelance writer.
I make my own schedule,
I can write about things that I'm passionate about.
Because of the water situation here in California,
I just felt that, you know, we had to start somewhere.
So I started putting in drought-tolerant plants.
As I was doing more reading and researching
on drought-tolerant plants,
I discovered that there was such a thing as a native plant.
And the more I read about native plants,
and how important they are to the wildlife,
I just got mesmerized by that whole concept.
And then I thought I should maybe produce a book.
You've probably seen the picture of her
working with her inhalator and her, her jacket on.
And she's working on my book in that picture.
And I just don't know how many people
would be able to do that.
[Mallory] I would say that my purpose
is to give something back within my lifetime.
I used to envision that in a lot of different ways.
And now, I think that. you can make a difference
in big and small ways.
And sometimes, ways that seem small
are actually really big.
When Mallory moved to Manhattan Beach,
she had a few months of relative stability
and had a great time at the beach and was so happy,
the happiest I'd seen her in a long time.
-[Mallory] Aaah! -[laughing] Oh.
[Diane] And then, she started to get sick.
I never knew if,
you know, the next day I was going to be in the ER,
or in the hospital, or whatever.
For a young person to be able to do all of that,
and balance life, a job, is a challenge.
And in the meantime, if you don't feel well,
um, it's challenging just to get through your day.
Her lung function was already in about the 40 percent range,
that's entering into the moderate to severe, um,
range of lung function.
[Mallory] [voice-over] [coughs] Healthy people
have thousands of bacteria species present in the lungs.
It's a diverse microbial ecosystem that remains healthy
because the diversity of species
means no individual bacteria can gain too much traction.
But cystic fibrosis makes this type
of idyllic polyculture impossible.
Gone are the healthy bacteria
present in a healthy polyculture.
Now I'm stuck with a monoculture system
perched atop airways that are growing increasingly fragile
from the endless assault.
[coughing] To have your lungs being destroyed from the inside
feels like there's a boulder sitting on your chest
preventing you from taking a deep breath.
It feels like there's little knives stabbing you
in the bases of your lungs every time you try to breathe
or every time you cough.
You could say it's the,
it's the fear and disappointment I experience every time
I can no longer do something I previously thought was easy.
[on video] We just walked a ton.
[Diane] [on video] I know, Mal. That's really good,
considering you haven't been out of bed in a week.
[Mallory] [voice-over] Being short of breath
is almost like a state of mind.
It's hard to focus on anything else
when you have to focus every minute on breathing.
[machine thumping]
[coughing]
[Diane] And then she went through a period
of back-to-back hospitalizations where they could not get control
over the cepacia, and ultimately,
UCLA was calling Stanford to consult,
and Stanford finally called me and said,
"Time to bring her back."
[Mallory] Last week, I went to see my doctor
at Stanford, my doctor there
who's really the man that I trust with my life.
If I were on my deathbed,
I would want him to be the one making decisions.
He advised that it would be best if I put my health first
at this point and focused on spending at least six months
or longer in the Bay Area
so that I could be close to Stanford Hospital
so that he could sort of regain some understanding of my,
my situation and so that I could be close
to the people who really specialize
in my specific, complicated issues.
Yeah.
I met Mallory at a New Year's Eve party
or New Year's Eve pregame for a party.
I thought she was really cute, right off the bat.
And at the time, she was living in LA.
And so, she was in a different city,
so I kind of wrote her off in the beginning.
I was like, "I don't want to do long distance."
And once I found out she moved,
she was moving back to the Bay Area, you know,
I made sure whenever she was at the next party
and the mutual group of friends we had
that I was there to say hello.
When she moved to San Francisco,
I was living in San Francisco.
You know, there were more things happening
that were changing her decisions,
as in she was starting to lose more control over her decisions.
[Talia] She wasn't able to go out
and do a lot when she lived here.
It was always just a lot of activities at their apartment
and it's a small San Francisco apartment
and you can't fit that many people in there.
So it just forced us all to get to know each other a lot better.
That's when she started being on oxygen a lot more.
It was difficult for her, but she always
kept a smile on her face and stayed optimistic.
[Talia] I went to go visit her at the hospital.
And I have this vivid memory of asking Mallory
who else was coming to visit her
and she just kind of coyly was like,
"Oh, this guy that I met at a party."
And I was trying to get more information out of her,
but Diane was in the room,
and she didn't really want to say anything.
What way my pickup line? [chuckles]
That's a good question.
I think we would both say that our turning point was
when we sat down on the balcony of the house party we were at.
And we just talked about life.
You know, I'm not gonna say
that we had this insanely deep conversation right away.
But it was more of the superficial things
that we felt comfortable with
in terms of what brought us happiness.
And we found a lot of those things were the same.
[upbeat music]
♪ I must confess When I wear this dress ♪
I'd known about Mallory's sickness,
um, just from her presence online.
She was very open about everything
that she was dealing with.
[vocalizing]
♪ I feel so happy
♪ I'm stuck on you
[Jack] I remember the optimism we both felt.
just being young, and you know,
having the good fortune to have a good education,
and figuring out how to use that in the world.
[vocalizing]
They liked to surf, they liked the beach,
they were laid-back.
[Uncle Danny] He was obviously madly in love with Mallory.
She was madly in love with him.
[Gaby] For her to be able to have conversations about
"Once this happens, we will."
It had her looking forward.
[Jack] There was nothing standing in our way
between pursuing love.
You know, as long as Mallory was alive,
she was gonna fight for her life
and for the love that she felt for the people around her,
and I was gonna fight for her as well.
So I was coaching a Junior Olympics
12 and under team and, [clears throat]
Junior Olympics happened to be
up in the Stanford area that year.
So I texted her and said,
"Hey, I'm gonna be up in the Bay Area.
We should meet for lunch."
She said, "Okay, cool. Let's do that."
And then, by the time I got up there,
she had been admitted to the hospital.
So she said, "Well, you can come visit in the hospital."
So I went there, and Diane was there.
Dr. Mohabir had actually been away.
I think something happened with his sister
and he had been gone.
And we hadn't seen him in a while
after we had moved back up for him,
and we were frustrated.
And so, Coach Bowie came to the room,
and I said to Mallory,
"I'm gonna get him some food in the cafeteria,
and we'll be back in five minutes.
Do you want anything?" and we went to go get him
some French fries.
I was down in the cafeteria with Diane.
We were getting some food, and Diane got either a text
or a call from, from Mallory's doctor.
So we went back up to the room and the doctor actually said,
"You know, maybe Rob should leave."
And Diane and Mallory, "No, no, he's family."
Well, what Dr. Mohabir said
was that the antibiotics had done all that they could do
and that she'd become resistant to them.
And he said that if they were to withdraw the antibiotics,
she wouldn't live a year.
The doctor said that no one would transplant her,
and she should consider going on hospice care,
which basically means just go home and die.
I was crying, Mallory was crying.
Rob, I think was like a deer in the headlights
with his French fries that were smelling the room up.
It's one of those, you know, visceral memories that you have.
This is the first time that I saw
both her and Diane kind of break.
And it was, I mean, it was just,
just got heavy like that.
Uh, so she gave me the news
with, I think, Mohabir and her mom there and I was,
I was trying to block it out for the first couple minutes.
And then this,
the doctor and her mom stepped out to,
to give us some time, and I completely broke down.
The idea that the center
where she'd been treated for years and years
wouldn't even evaluate her or talk to her about it
was very, very, very hurtful to her.
[Gaby] That's one of the lowest,
I mean, she couldn't brighten up that time.
A little bit of disbelief. I mean, you can't.
It was dark.
[somber violin playing]
[birds chirping]
[Diane] [voice-over] The conversation
with Dr. Mohabir when he said he didn't think
there was going to be a transplant
was really difficult.
[Micah] When my sister was talking about
how the doctors were telling her that,
you know, they told her that she should not
even try to get one and she wouldn't accept that.
You know, I saw my mom, my parents fighting to get it.
So first of all, it's important to understand
that Diane and my mom are extremely close.
Um, and my mom had this line, she'd say, "I don't do sad."
And I think Diane adopted the same thing, right?
She just, you know, her attitude was, I'm not,
you know, no "pity parties". I don't do sad.
She's just gonna power through
whatever was adversely impacting her, um. period.
And at that point, I thought, well,
I'm gonna ask for more help.
And I found another doctor, and I said,
her name is Dr. Chhatwani,
I said, "Would you help Dr. Mohabir?
He's not having any luck."
And so, Dr. Chhatwani had written some personal appeal
in a chat room for transplant centers.
[Mark] We actively pursued transplant
even after being, having discouraging news
and rejections from people.
And UPMC was the one name that we had always heard
that was willing to take difficult cases.
[man] One, two, three.
[Dr. Pilewski] Yeah, so when I first met Mallory,
her lung function was less than 30 percent.
Among the spectrum of patients we see for transplant,
she was sick and really needed it.
So she was facing transplant or death.
Um, and from the very beginning,
I sensed that there was a lot of courage on Mallory's part,
that she had a lot she wanted to live for.
She wasn't done.
-[Diane] [on video] Hi, Mal! -Hi!
[Diane] [on video] Here we are on August 13th.
Mallory's about to take a swim
in the manner that allows her to breathe
since she's using oxygen. And here we go.
Moving to Pittsburgh was very traumatic.
My mom had been diagnosed with end-stage ovarian cancer,
and so Mark made the decision to stay back to be with Micah
and to take care of my parents.
And I went with Mallory.
Wave to the camera.
I just blocked it out,
because I could not allow myself to engage in the emotion
that I would feel if I were to really process
what it was I was doing,
to leave my mom at a time when she was dying.
I didn't want to leave my dad.
[Mark] [on video] Dad. Yes, Dad, wave.
[Grandma] [on video] Maybe take your hat off, sweetheart.
[on video] My hair's not combed.
[Aunt Meryl] You know, when we got
my mother's diagnosis, I remember telling my daughter,
and she was, you know, quiet for a few beats.
And then she said, "Maybe it's good."
And I said, "Why?"
And she said, "Because if Mallory dies,
Grandma would lose her mind."
I was terribly lonely.
I didn't socialize very much, and I talked to them every day.
I went, I went to them when I could.
What was shocking about Pittsburgh
was how sick she was, how different it was.
I mean, everything was so hard.
And I think that was hard for her, just in itself.
She was tired.
It was a lot of work, a lot of treatments.
She was on oxygen.
She became a lot more comfortable
talking about the fact that she was scared
and just what it meant
if she couldn't get a lung transplant,
or what it meant if she could,
and what that surgery was gonna look like and that, you know,
she could die on the operating table.
I was living in LA. Um, I was worried for her.
-[Jack] Surprise! -What!
[Jack] I would come to visit Mallory once a month.
Oh, my God.
[Jack] I think anyone who goes through a transplant,
especially a double lung transplant,
which is harder to get,
the demand for transplants is much higher than the supply.
Every day, the call could come from an unknown number
with a Pittsburgh area code of whether or not
you get to live another 10 years,
and that was a surreal mindset to be in.
I think Mallory said it best is, um,
she tried to get the best out of life every day.
But some days, all she could do was persist
and just survive to live another day.
[Diane] [on video] Hi, Mal.
[on video] Hi.
She was hospitalized several times
here in Pittsburgh from acute infections.
And so we were, we were worried
that she wasn't going to get her opportunity.
You know, she would expire before a suitable donor
would be, would be available.
[on video] Uh, things seem to be
getting worse instead of better.
I have no flu anymore,
but we think it's cepacia syndrome
with fevers and shortness of breath and pain
and symptoms that we cannot get under control,
and seems like I'm resistant, to, with the antibiotics.
So, we'll see what happens.
My boyfriend just left town, Jack,
he went to San Diego, and I miss him.
That's all.
[Dr. Pilewski] I think it takes a commitment
to do more than just what's in the textbooks,
and maybe even more than what's in the current journals,
and what the FDA has available to you,
and say, "Well, let's push the envelope."
I started looking into ways to get lungs for Mallory
that would avoid the scarcity problem.
I did some research
and found that there were some people
working on taking lungs from pigs.
I was keen on, on that idea
because if pig lungs could be used for human transplants,
then there wouldn't be a shortage.
And then, and then Mallory's lungs
wouldn't have to be allocated to someone
who didn't have B. cepacia.
I networked through a friend and,
and got to this professor at Harvard,
and he wrote back and said that he didn't think
that the transplantation from another species
would be ready any time soon,
but that I ought to look into other possibilities
for clearing the infection, including phage therapy.
I read about bacteriophages,
which is Greek for "bacteria-eater."
A researcher in Canada
had successfully eliminated a B. cepacia infection
in a cystic fibrosis knockout mouse.
He explained to me
that phages are naturally occurring organisms,
so therapies based on them can't really be patented.
So even if it could save someone's life,
no one can make money on it.
And if no one can make money on it,
then no one is going to spend the millions of dollars it takes
to do a double-blind placebo-controlled trial
meeting FDA standards.
So that was too far away from the clinic.
-[laughter] -[woman] [on video] So, Mal.
How do you feel about potentially getting new lungs?
[Mallory] [on video] I feel stoked.
-[woman] [on video] Stoked. -[Mallory] [on video] Stoked.
[woman] [on video] Diane, how do you feel
about Mallory's new lungs?
We can't see your fingers.
[laughing]
[Gaby] Talia was there.
And they called me, and they said,
"She just got called for transplant.
You need to come." I was like, "Okay."
So I got on a plane immediately.
And they came in at six in the morning, and they said,
"Okay, we're taking you down to pre-op."
And I was like, "Oh, shit."
By seven, we're down there, and they tell us, you know,
"They're good lungs, but someone else got 'em."
[Jack] I got in in time for the doctor to tell us
that no, they were going to someone else.
We were mortified because nobody had told us
that Mallory was a backup,
and we didn't even know that that was actually a thing.
So we all went out for Mediterranean food
at 11 o'clock in the morning.
And I remember Mallory saying to me,
"Mom, this meal was amazing.
And if I'd gotten the transplant,
I would not have had this delicious meal
with all my friends."
And I realized that was her secret.
No matter how much shit was thrown at her,
she was able to rebound and resurface and move forward.
She just felt very fortunate despite,
um, the poor hand she'd been dealt.
She felt betrayed by being dealt that hand,
but she also felt blessed by the opportunities that she had.
[man] Okay. Un momento. Un momento.
[Mallory] Oh, Maria.
[conversation on phone]
Oh, stop, stop. Okay. What are you--?
Tell her that she's makin' her cry.
That's not okay.
-We cannot make her cry. -[man] It's not bad.
No. Tell her not to make her cry.
This is, this is the happy time of the night.
The tears, the tears are when they tell us it's not viable.
[man] Okay.
-Tell her that she has to... -[man] Okay.
-Tell her I miss her. -No pity parties.
[Mallory] [crying] It's definitely a stressful process
to get the call, have it not go your way,
get another call, have it not go your way,
get another call, have it not go your way.
By the time the fourth call comes around,
it's sort of hard to believe that it really will happen.
So I think I spent most of the day in a state of disbelief,
and it's only really now hitting me
that it actually might happen.
In the five-month period where I got no calls
in between the first two dry runs and these,
and then the last one, it started to just feel like
it was never gonna happen, and we were just going to be
living in Pittsburgh for years and years
with no news on this transplant, so.
-[coughing] -[background conversation]
[machine beeping]
And then she said it took four times,
which makes it seem like it's happening.
-Oh. -Guys, picture?
-Oh, well. -Holy shit, Talia.
[Mark] Don't read, don't read into this.
I'm sorry. I'm reading into every little everything.
-All right. -Oh, there's Jack.
-He wants his goodbye. -Bye.
[Jack] [over phone] Bye, Mal. Love you tons.
I love you too. Wish you were here.
[Jack] [over phone] Wish I was too. Super proud of you.
They will give you updates as they get them.
Yeah.
Oh, boy.
I'll get in bed, Mark, go ahead. You can hug her first.
I want the last hug.
[indistinct chattering]
[Mallory] Thank you.
[Talia] Guess I picked the wrong side.
[laughs]
[Diane] They're just grabbing an O2 tank.
You're perfect now.
[woman] Thank you.
[Talia] I knew I saw her in there
-through the years. -[woman] Okay.
[Talia] That's good.
[Mallory crying]
[Talia] Guess I should take a picture.
Okay. Perfect. All right, thank you.
-[heart monitor beeping] -[muted chatter]
[Doctor] The lungs look okay. I think it's gonna be fine.
But I want to put 'em on the machine, okay?
Okay, all right.
[muted chatter]
[machine hissing, beeping]
[Diane] You worry,
"Is my child gonna die on the table?
Is my child gonna make it through surgery?"
[Mark] I was, half of me thought
that I might never see her again.
-[nurse] Okay, Doctor? -[doctor] Yeah.
-[nurse] We're ready for ya. -[doctor] All right.
[Mark] Um, half of me knew that I would.
[nurse] Just hold on the lungs.
[doctor] All right, so the right lung's out.
[machine beeping]
It's unlike anything to see your daughter
who was tethered to oxygen before the surgery
and who you thought wasn't ever gonna get a transplant
because of the cepacia be able to sit up
and without oxygen take this breath.
And it wasn't smooth like... [breathes deeply]
you know, it was challenging for her,
but it was really quite exciting.
[Diane] [on video] You wanna smile? One, two, three.
-Two, three. -[woman] [on video] Smile.
[Diane] [on video] Is she doing well or what?
[woman] [on video] Yeah.
[Mallory] [voice-over] I feel like people with CF
are privy to secrets it takes most other people
a lifetime to understand.
[nurse] [on video] Here's Mallory walking down the hall.
[Mallory] How lucky we are to be alive.
How lucky anyone is who has their health.
How we should be appreciative
of anything that's in our control
since our health is most often not.
[cheering]
That we can leave behind a legacy when we go
that will impact others.
That simple things are often the most beautiful.
That love and happiness
are the most important things to strive for.
That ultimately, we shouldn't give a damn
what other people think
because everyone's making their own way,
and everyone's facing different struggles
that other people aren't aware of.
CF has given me my value system and ultimately,
no matter how hard it is, I'm grateful for it.
Mallory Smith is getting ready to celebrate her 25th birthday.
It's just three days away.
That may not sound extraordinary, but it is.
You see, she believes doctors here in Pittsburgh
saved her life.
They did. They did.
The doctors there are just my heroes,
because they took a chance on me when nobody else would.
[interviewer] You get emotional about it.
[Mallory] [voice-over] The pain is temporary
and then you get to live the rest of your life
with being able to breathe.
Yeah. The big moment for us
was being able to leave the hospital
and she was still on antibiotics at that time,
but she no longer needed oxygen.
She was breathing through a 100 percent viable lungs,
normal person lungs,
and we were able to go on a walk in the crisp fall air
and watch a local kickball game
between like two beer-drinking teams.
And [chuckles] we really enjoyed ourselves,
'cause Mal never got tired. We never needed to wait.
And our hopes were at a peak at that time,
'cause we were talking about plans to move back to LA,
how long that would be, where she would want to live,
and we were full of happiness and joy.
♪ Ditch plastic It's fantastic ♪
I think it was about a week after her birthday
that she started getting fevers.
And that's a danger sign,
because the fever's a sign of a bacterial infection.
And the risk in B. cepacia transplants
is that the B. cepacia will reinfect the new lungs
'cause of the drugs that you take
to suppress your immune system to prevent rejection.
[Dr. Pilewski] And Mallory unfortunately
developed a pneumonia from her Burkholderia.
It was necrotizing pneumonia that was going fast,
and they showed me the X-ray pictures
of it going up your lungs.
First, when your lungs are newly transplanted,
it's all black, the black is good.
And then there's the white film that starts creeping up.
It's, you don't want to believe it.
[nurse] Every single person...
[Jack] I don't think I was ready to accept that,
especially after the hope and happiness
that we had just shared over that last visit together.
I didn't want that to go away.
We hadn't felt that in months, almost a year.
[Diane] She was on a crazy complicated round of IVs.
I just wasn't going to give up hope.
I was working feverishly to try to find new antibiotics,
and there was one that was hopeful
that came from Japan
that hadn't been approved in the United States yet,
but it didn't work.
[Diane] That's when Mark read an article
about an extraordinary scientist named Steffanie Strathdee,
who saved her husband from a superbug using phage therapy.
I reached out to them. And Steffanie sent out a tweet
to phage researchers all over the world
trying to find people who had phages
that were active against B. cepacia.
And we were successful, we found two of them.
I never say no to an idea, unless it's dangerous.
And this clearly was not dangerous,
saying we're going to take a bacterial isolate
to try and identify a novel therapy.
Sure, let's do it.
[phone text notification]
[heart monitor beeping]
[phone text notification]
So there's a process of identifying a phage
that's active against the specific bacterium.
And then that phage has to be grown up
in sufficient quantities to use
and prepared such that there's not a contaminant.
That process evolved in Mallory's case
at breakneck speed,
in large part by having three teams of people
who were really, really committed to it.
The Navy Biomedical Weapons facility in Maryland
had been researching that for a while
for soldiers coming back from overseas
with these really random superbugs that no one had seen.
They wanted to treat them.
And also some Canadian firms that
had been researching phages academically.
And so, Mark was able to combine,
along with Steffanie Strathdee's help,
this global research group for saving his daughter.
She was definitely not feeling well.
She was like, "Sorry I can't talk more."
And then they told her,
"Look, we need to put you on the respirator."
And that sucked, because, you know, those were,
those were signs to her that things were really bad.
That was an incredible time for, for her and her family
because sort of on a day-to-day basis,
you'd see these tiny glimpses of getting better.
Fevers would abate for a day and a half,
and then fevers would come back.
[Jack] I was on the night watch, two a.m. to 10 a.m.
And in the middle of the night, she shook me awake, you know,
and I was like, "Oh, what's wrong? What's wrong?
You need something like water, bathroom, nurse?
What's?" You know, I was ready to fight.
[laughs] And she was like, "No, I need to write."
And so I got her a pen and pad of paper.
And she wrote me this note that read,
"You have so far exceeded my expectation
of what is possible for love."
It was a beautiful moment, and of course,
I assured Mallory that I felt the same way.
I don't believe that I called people.
I think what I did was I posted on Facebook,
and I said, "The doctors have said
that anybody that should be here should come today."
And 30 people got on a plane and came.
[heart monitor beeping]
[Uncle Danny] I just remember, it was kind of a blur.
You know, it was late.
We went into some waiting room. There was food.
There were people there all around the table.
Mallory was in her room down the hall.
[Jack] Things were getting very scary, um.
but Diane was adamant that we don't tell her
that she was dying.
And she wanted Mallory to keep fighting
while we were stalling for time
to get that medicine created and shipped to us.
[Diane] She knew that Mark was fighting
for her life, and she knew that we were
getting her the phage.
And I said to Mallory,
"I'm very grateful that you allowed Dad to do this
because it's gonna save you, and hopefully, it's gonna save
hundreds of thousands of other lives."
[Dr. Pilewski] The phages were, were prepared
and ready to go
but there were transportation issues.
And our, our transplant surgeon, Dr. D'Cunha,
managed to work with his people who do transportation for organs
and finagle a way to get the phages
transported here as expeditiously as possible.
[helicopter whirring]
[man] Is this wild phages? It is insane.
Come on, phages.
[woman] Oh, my God, I'm crying. Oh, my God.
That's the batch.
That's nice work.
[man] [on video] All right, Mal.
[woman] [on video] We are walking the phages
down the hall,
down the wall. Here we are.
We're walking in.
These are the phages.
[Diane] [on video] Oh, my God. Can I give you a hug?
Thank you so much.
Yeah, don't drop 'em.
[Diane] [on video] What do we do?
[man] [on video] Yeah, I'll hold them for now.
Thank you.[laughs]
[woman] [on video] Don't drop 'em.
[Mark] The phages were administered at,
at about six p.m.
One variety was given into the, the right lung.
and the other one was given in the left lung.
And then a microdose was given intravenously.
[machine beeping]
[muted chatter]
We were planning to dose her with them every 12 hours.
And the next morning, when they were preparing
the second round of doses for her,
we had a heart-to-heart with the doctor who told us
that even if we pulled Mallory back
from the brink of death here,
her blood oxygen had been depressed
for so long she would suffer permanent brain damage.
So I remember being in the room with Mallory
and Diane came in and she was teary and saying,
"It's not working. It's not, it's not,
it's not happening."
[heart monitor beeping]
And it felt like a knife through the chest.
Yeah, knowing that we were gonna have to
take her off life support, and...
I knew that's what she wanted.
[Mark] And we were all touching Mallory,
holding her hand or feet, rubbing her feet,
or touching her, her legs.
[sniffling]
And...
We just saw her pulse rate fall
and her respiration rate fall and her blood pressure fall.
And then about ten minutes to five, her,
her pulse stopped.
[slow piano notes playing]
[waves lashing]
[birds chirping]
We wanted to see whether the phages
had reached their targets and had started to work.
And the autopsy did confirm
that the phages had already started
killing the B. cepacia germs and multiplying the phage.
And Mallory's case
and the publicity that we got for it
have sparked a resurgence of interest in phage therapy,
especially for cystic fibrosis patients,
and several dozen patients have been treated,
and some lives have been saved.
Not all of them.
You know, a lot of them got it too late, like Mallory.
And I would like to see that timeframe moved up.
[Dr. Pilewski] We learn from patients like Mallory
about what we could do different.
We have, we have this phage collaborative
going on right now, encouraged by Mark and Diane.
So those efforts will hopefully allow us
to get more patients through the first year or two
after transplant 'cause that's really where
the biggest landmines are.
People get through the first three, four, or five years
after transplant without major complications,
most of those patients are going to live ten, 15, 20 years.
So, that's our hope.
We'll get there.
[inhaling]
[mellow music playing]
[approaching footsteps]
[Diane] [voice-over] When we moved to Pittsburgh
for the transplant
and she was afraid she might not make it,
Mallory finally gave me the password to her journal,
and told me not to read it
if she made it through transplant,
but that if something happened to her,
she wanted me to open it,
and there would be instructions inside.
What I found was 2,500 pages
of her carefully recorded thoughts over 10 years.
I also discovered a treasure trove of audio.
She was very happy, and she chose to live happy,
and that was her mantra.
But at the same time, I think she suffered immensely,
and I don't think anybody had any idea
of how deeply she suffered until I read the journal.
And then I said, "Wow, I missed this."
Going through a third transplant
during a pandemic like COVID-19 has been incredibly scary.
I was not able to have family or friends with me at all.
I could only bring a few items with me to the hospital.
And I chose to bring this book because I just,
I see it, and I see strength.
And I also knew because my family wasn't there,
I was gonna need something to make me feel less lonely,
and that was Mallory's book.
[mellow music]
[keyboard keys clicking]
[Mark] These are Mallory's words.
"I'm back in the hospital thinking about what I want.
I want to wake up in the morning
and take a deep, full breath.
I want that breath to fill me up,
to imbue me with joy and energy,
not to irritate or pain me
and set off a spasm of coughing.
I want to be able to do the things that I dream of."
"That I dream of while I sleep.
Things that are taxing in reality.
Hiking, running, biking, swimming, diving, kicking,
screaming, dancing, laughing, jumping, falling, leaping,
-soaring." -[Caleigh] "Soaring.
I want to get to know another person
without fearing what they will think
when they truly understand the way my body works.
I want to trust that my body will be able to help me,
not hinder me, in living out my dreams."
"I want to know that when my closest friends
are sitting on the porch at age 80,
I'll be sitting there with them."
"I'll be sitting there with them,
reminiscing, smiling,
weeping, talking, drifting, chuckling."
[exhales] "I want to fall in love.
[sniffles]
and have a relationship that's reciprocal.
And not have to burden my love with the task
of taking care of a spouse who can't pull her own weight,
who's needy."
"I want to have a child but more than that,
I want to hope to have a child
without the nagging worry that the dream is entirely foolish.
And when I have this child,
I want to be able to pick her up,
carry her around."
"Climb trees with her,
play with her in the jungle gym,
teach her how to swim, dance with her in the kitchen,
show her the most beautiful hikes,
be there to push her into her first wave.
and keep up with her fireball energy of youth."
[Maya] "I want to effect change in the world.
I want my life goals not to end as solely surviving.
I want to live largely, [sniffles]
richly, vastly."
"Dynamically, lovingly,
graciously, eternally, and ephemerally."
"I want to feel amazement and wonder every day."
"I want to never lose sight
of my place in the thread of humanity
and the fabric of the earth."
"In the palace that is this universe."
"I want friendship, happiness, humor."
"Laughter, lightheartedness."
"Small conquerable worries."
"To want these things is normal,
to expect them is dangerous."
"Do I have to abandon
my beautiful idea of what life is?"
"Do I have to abandon these fantasies
as possibilities for me,
to refashion my idea of the future?"
"To settle for just surviving,
breath by breath?"
"Breath by breath, one day at a time,
sacrificing the very idea of dreams
to prevent disappointment.
Only if I allow disappointment to crush my spirit.
I am happy today."
[waves lashing the shore]
["The Flower I've Become" performed by Kalyna Raquel]
♪ When all my hopes seem gone
♪ Your love was always there
♪ I opened up in darkness
♪ And now I breathe the air
♪ You showed me love Through rain ♪
♪ You showed me love Through sun ♪
♪ But from the storm I'm thankful ♪
♪ For the flower I've become
♪ Without it Earth would dry
♪ The seed would not survive
♪ And I would never grow
♪ To see the break of light
♪ You showed me love Through rain ♪
♪ You showed me love Through sun ♪
♪ But from the storm I'm thankful ♪
♪ For the flower I've become
♪ The struggle brought me up
♪ And made my roots dig down
♪ And those who see my bloom
♪ See half of What's in ground ♪
♪ So thank you for the rain
♪ And thank you for the sun