It's funny how life is what happens to you after you make
your plans. It's a saying I have heard throughout my life from
my mother. You're heading one way and all of a sudden a series
of events aligns like a perfect storm and you get this strong
inner gut feeling, "this is no coincidence; something
greater than myself is at work here."
I'm still trying to absorb all the events of the past months,
but am quite sure about one thing; what I just went through was
no accident. In fact, as bold as it may sound, I actually feel
it was so very meant to be. In the innermost quiet of my soul, I
do believe God or the universe or whatever force of fate you
believe in, called to me, and despite my hectic and often
frenetic life, I heard it and felt it deeply. It cut through all
the noise. I knew it was something I needed to do. That's not to
say I understood all that was happening, or where it was going,
or even why it was important. I didn't. I just knew it was.
I knew that I had met an extraordinary being who was both
little boy and wise old sage all wrapped up in one little body
who asked me to help fulfill a dream. Who knew that in doing so,
he would make mine come true as well. In fact, at the time, no
one would have imagined how magical our meeting would turn out
to be. I thought I was doing something for him. Little did I
know how much he would end up doing for me and my family.
Dustin Meraz
|
The young boy/little man who would come to change my life and
that of so many others is Dustin Meraz. I was told by all who
knew him on Four West, the oncology floor for the sickest kids
at Childrens Hospital Los Angeles, what a special being he was.
Every child here is special, say the doctors, but this one tops
them all. Regardless of all he was said to be, no one could have
prepared me for our first meeting. He was receiving quite a
potent intravenous dose of something called BSO that all hoped
would be the last- chance miracle he needed to kill his cancer.
Walking through the bright halls of Childrens to his
super-isolated room, where we had to wash our hands and don
protective masks and footsies before going in, I never expected
to be greeted with such a radiant smile from a boy I was told
was probably going to die, and knew it.
Of course, that's what was foremost in my mind. I'm meeting a
terminally ill child. Yes, all the doctors said there was always
hope for a miracle; they'd seen it before, but it was still
unnerving to know such a young soul was confronting very adult
fears and coping with them.
I've been around the dying before; a man very close to me
died in my arms after a valiant fight with pancreatic cancer. He
was just forty-three and the loss was crushing. He had so much
left to do and to live for. But this was different. This was a
young boy. This was a bright, effervescent child, who might
never get his license, go to his junior or senior prom, much
less experience his first kiss. My dear friend who was cut down
young at least lived to experience some life. It seemed so
unfair that any child would be denied the opportunity to fully
realize his potential. Kids get colds and broken bones playing
ball; they don't get diagnosed with a killer cancer at eleven
years old after going through ten normal years doing all the
normal kid things -- baseball, soccer, wrestling and snarling
with his older brother, and dreaming of one day becoming a movie
star. Dustin loved to act!
These were the rush of thoughts bombarding my brain walking
in. I was told the family was so shocked by the whole thing --
sideswiped by the unimaginable. One day he had cramps in his
legs. Another day, out of the blue, he threw up at school. And
then there was that night when what he thought were growing
pains in his hip just kept getting worse. A trip to the
pediatrician sent him immediately to the hospital. And there
life changed forever. It wasn't growing pains. It was pain from
a tumor growing out of control in his body.
Dr. Clark Anderson was compassionate but direct, "Dustin
has neuroblastoma, a deadly form of cancer that attacks the
bones in the body and at his age, the odds are not in his
favor."
Dusty and older brother David, Jr.
|
I had heard the whole story. I knew in the eleven months
since diagnosis, Dustin's surgery was not able to completely
remove the tumor. I knew none of the aggressive therapies they
tried were working. Every odd was against him. I knew doctors
lost more hope for a miracle when he relapsed. His cancer was
the most resilient and aggressive it could be and this latest
BSO therapy, as experimental as it was, was still a long shot.
Dr. Anderson said Dustin's brother, David Tyler, described it
best. It was like the movie, Independence Day, where a multitude
of super strong attacks leveled at the mother ship of evil just
couldn't penetrate the force field to destroy the aggressor.
They needed a super-duper weapon to shatter the field to break
through and conquer the core. Finding the precise weapon held
the key to victory. Unfortunately, up to now, doctors, despite
every effort to be creative, had been unable to crack the code
to get at Dusty's cancer. And they were almost out of weapons in
their arsenal. Everyone knew, including Dustin, they were
running out of options.
I was a new member of the board of trustees at the hospital
and heard of many such sad and tragic cases of stricken
children, many of whom happened to be Hispanic. It was my
friend, the Publisher of the largest Spanish language weekly in
the country, Jose Lozano, who recruited me to the board. Seventy
percent of the kids at Childrens are Latino, and the board was
hoping to have more Hispanic representation. As a Latina and a
television broadcaster in the market, they thought I might be
able to help galvanize more interest in the Hispanic community
to reach out to their neediest kids.
Before going to meet Dusty for the first time, my only
exposure to very sick children had been at Christmas time. The
hospital newsletter was soliciting help for their annual Elf
Program that makes sure every needy family with a sick child
receives presents for Christmas. I made a call to Roz Grushkin,
an oncology social worker in charge of the program, who told me
fifteen families still needed sponsorship. I was so surprised to
learn the money she was collecting was not just for the ailing
child, it was for the whole family. "Cancer doesn't just
affect the one child", she said, "it affects every
brother, sister, aunt, uncle, cousin, mom and dad."
I had been looking for something meaningful to do in my life
for a long time and couldn't have felt more grateful for the
opportunity. I had been in television news for nearly twenty
years and had grown quite disillusioned about the merits of the
business. It certainly, for me, had become more about
performance than craft and more about self-promotion than really
making a difference. Worrying about career, image, promotion,
the next show and ratings had gotten pretty empty. And I was
certainly growing less and less enamored with a business that
celebrated the ratings of Jerry Springer in the morning and
Who's Hot in America at night. I was looking for more real
American idols.
After years with network news, from New York to Miami to
Chicago to Los Angeles, I was now anchoring a local morning show
that was more fun than anything else. I had tried to break free
in the past. I started an Internet company to empower Latinas,
but that went with the rest of the Dot Coms. Now I was hoping
to grow my production company and develop projects that perhaps
weren't commercial, but certainly more rewarding. Documentaries
were always a dream. I was definitely searching for something
new; I needed something in my life that felt real and meaningful
when Childrens Hospital came into my life.
I had already taken a major step in creating a whole new life
for myself. Funny how it happens when you're ready. At forty-one
I had finally met the man I had been looking for all my life.
John Farrand was everything I had always dreamed of. We fell
deeply in love. And although he was older than I and had
accomplished a great deal more; running three major companies,
having had five children and three grandchildren, we were in
very much the same place. When we first met John said he too was
hoping to become less involved in corporate life and more
involved in really living.
He had no idea how soon he would have that opportunity.
Shortly after we married, John very abruptly, from one night to
the next, left his job after nearly twenty years. Overnight
John was no longer President and Chief Executive of the major
film industry giant he built into the signature brand it is
today.
It was a difficult move and affected him deeply. It was the
first time he had been out of work in forty years. John found
himself feeling he had little to contribute without his
corporate title. He was definitely soul-searching. After two
decades you can give everything to a job, to your employees, to
your craft, only to leave it feeling empty. I guess we were both
forced to really delve into the mystery of what makes a life
truly meaningful. How really do you make a difference?
It was at this point in our lives we were presented with the
Elf Program. The timing could not have been more perfect. They
needed us and we needed them. It was a Saturday morning and John
and I stepped into a small room on the ground floor of the
hospital chock full of colorfully wrapped presents that filled
the four walls floor to ceiling. The money we donated, along
with the donations of many others, were about to put smiles and
tears on the faces of stricken families. As each sick child
entered the room with their moms and dads, sisters and brothers,
most of them low- income Hispanic or African American, we
watched with great humility, the joy and appreciation each
experienced as a result of our small gesture.
It was clearly the most meaningful day both John and I had
shared in a very long time. It put so much into perspective.
Quarterly earnings and rating points meant little in this room
where life and death of the smallest beings hung in the balance
and made every minute matter.
That day I met a little boy named Angel Martinez. His little
brown round face, with deep half-moon dimples and huge brown
eyes, melted my insides. Roz, the social worker, told me he
would most likely not be around next Christmas. We gave him a
Gameboy to play with and his smiles and leaps for joy filled our
hearts. He had a very lethal leukemia and was in his last months
for sure. I watched John help carry down all the presents to the
car parked blocks away as they could not afford parking fees. I
thought, as a chief executive he would never have had the
opportunity to do that. I fell even more in love that day
watching him give of himself for no other reason than pure
caring.
While John was gone, Angel's mother, Cecelia, pulled me aside
to warmly and sincerely thank me. She also managed to muster the
courage to ask if there was a chance I might be able to pull
some strings to expedite her approval for subsidized housing.
With her having to be at the hospital all day for Angel, she was
unable to look after her little girl who was getting into gangs
and drugs. They needed a better place to live. The state had
already taken her daughter into its custody. If Angel got the
chance to leave the hospital, she wanted a better place to take
him home to -- a place where he could play safely outside. There
was little I could do, but it certainly again put all into
perspective. Our problems seemed so insignificant in comparison
to these families with devastating circumstances and lots of
heartache ahead who exhibited nothing but strength and love and
faith.
Many of the families, I was told, could not even afford the
bus fare to the hospital, much less money for meals while there.
Many would wait until their sick child finished what was
delivered on their trays, to eat what was left. Some parents
couldn't leave their minimum wage jobs to stay with their kids
while they received chemotherapy. I thought of these frightened
children wanting their mommies and daddies, being left alone in
those hospital rooms with strange people with scary and painful
procedures to face and endure all alone. Imagine, so many just
spoke Spanish. The language barrier at times would only make it
worse. I remember one visit to the hospital popping in to see
Angel and finding him alone. It broke my heart. With tears in
his big brown eyes, he asked, "Where's my mommy?"
Turns out she had to attend a meeting with the doctors while
Angel's dad had to work.
John and I left that day desperate to do more. I never had
children but John had five and three little grandchildren to
boot. Neither of us could fathom this happening to us. We wanted
to help. We learned again, when you're really ready, when you
are fully awake to what's around you, what you seek really does
find you just as the Bible says.
At the end of our playing Santa for the day, we spoke with
Roz about the amazing work she did. She allowed us to take all
the "thank yous," but it was this magical lady and her
remarkably small staff that made it all happen. She looks like a
grown up orphan Annie with long skirts and pearls, and cute
frizzy pulled-back hair, and a warm delicious quirky smile she
shares generously with all. Her primary job is to counsel and
advise numerous families with horrible cancers, how to best cope
with the disease, maneuver the system to get what they need for
their child and themselves, and is always on hand to share her
warm compassionate shoulder to cry on. And boy does she love the
kids she cares for. Dustin, she told me, loved to tease her,
comment on her fashion choices, question the value of her
jewels, make charming requests for stuffed animals and peruse
through her daily schedule. "He always makes me
laugh."
On top of all her duties, Roz, every year, works around the
clock to make sure all her kids get presents to open under their
trees. She had her small staff do all the shopping personally as
well as all the wrapping. These were not just generic age and
gender appropriate gifts often handed out at charities. These
were specifically chosen from lists she had each family fill out
according to their wishes. And yet on this Saturday afternoon,
Roz stood in the background with a quiet smile, knowing that her
work that day made a difference. I so admired her.
Roz was quite leery of the whole Hollywood scene and would
often make fun of my television life. When you see doctors doing
amazing things to save lives, and families doing all they can to
keep their kids from dying, it's hard to see actors, movie stars
and the rich and famous, as icons. She had her own role models
and heroes she witnessed everyday. It was our privilege that
Saturday to witness them with her. It was awesome and humbling
and just what John and I needed.
In the late afternoon, just before saying our goodbyes, she
happened to ask about our little production company. I told her
it was just getting underway with the hopes of doing more
meaningful projects. But she wasn't just asking idle questions.
With Roz there was always another motive that usually involved
helping one of her kids. It was then she told us about Dustin.
"I have this buttery little boy who wants to make a
movie," she said, "His name is Dustin and he might not
be around a long time. Make A Wish wouldn't do it. Maybe you
can. He wants the world to know that kids get cancer and that
it's really hard." Roz told us Dustin was the perfect
little guy to do this. He knows every intimate detail of his
disease, takes control of his medical care, talks openly about
his prognosis, has a philosophy on life and is willing to
expound on the possibility of his death. "He's a little
Yoda," she said, "a most special little boy."
They are all special, these children, these "little
baldies" as she calls them, but Roz said this little boy
stood out and it would be such a gift to him to help him fulfill
his dream.
John and I were quick to jump at the opportunity to do
anything we could to further help any of the kids here. But
beyond our philanthropic interests, I have to admit, meeting
Dustin also appealed to my own inner searching for answers on
the meaning of life. I think John certainly felt the same way.
We both were so deeply drawn to a young and innocent being, who
by all accounts seemed able to live and face his fear with such
grace and dignity.
I asked how he was able to even get there. Roz told me
Dusty's family made it a point to be honest with him even when
it was tough. It's what Dustin wanted. I couldn't imagine having
such courage even in my forties, much less as a child.
Giselle & John Farrand visit Dusty
|
It was with all this background that John and I first went to
meet Dustin. Walking through those halls to that special room,
we opened the door and first saw that spunky brown skinned kid
with a thin black spattering of hair growing back on his head,
through that thick plastic curtain. He waved, cracked that
trademark mischievous grin of pearly whites I would come to know
often and mouthed, "Hi I'm Dustin," all while jabbing
on the cream colored hospital dial phone with his dad. First
thing that hit me was his big brown doe eyes, bright with light,
and those fat deep dimples that carved tiny half moons into his
cheeks. "Wow," I thought, "you'd never know he
was sick just looking at him."
John and I stepped into that room with our footsies and
washed hands and were immediately welcomed with an open hearted
hug from Dusty and his mom Trisha. Surprisingly, there was not
one uncomfortable moment and no uneasy silences to fill. Dustin
was all life! It's a funny thing to say about a boy so sick, but
that is exactly what he was about; pure life and hope and
resilience.
I said, "Boy I hear you've been through a lot!"
"Yeah," he said, "I sure have!" At his
mother's urging he readily showed us the scar on his belly that
looked like a zipper from his sternum to his belly button.
"That's where they took out as much of the tumor as they
could!" He showed us the port carved into his chest he
called "baby," that allowed all the chemo and other
necessary fluids and medications to flow without sticking him
repeatedly with needles. I asked him, "Why do you call it
baby?" "Cuz I have to take care of it just as if it
were my baby," he said.
He really did surprise us by how precise and direct he was in
discussing his circumstances. And even more surprised at how he
coped with his mother's very candid assessment of his prognosis.
Trish said, "Dustin knows we are doing every thing we
can, but the odds are not in our favor. He knows he could die
and we are very honest about that."
The honesty, Dustin said, was preferable to keeping things
secret. Yes, sometimes things were scary, he said, but it was
still better to know than not know.
I was stunned by this little boy wonder. I asked him if he
ever asked, "Why me?" At first he said he did. But
then he said he stopped asking. "We don't know why things
happen," he told me, "they just do and you have to do
the best you can with what you're given and take it day by day
and be happy if it's a good day." "What's a good
day," I asked? "When you are with your family and
friends; that's a good day."
We talked on and on for a couple of hours that first meeting,
about everything from this new experimental treatment called BSO
he was receiving, to learning the names of every one of his
treasured stuffed animals he had collected over the past several
months. And we spent a lot of time listening to him retell the
story of Julia Roberts making a surprise visit. He showed us the
scrapbook he was making to chronicle his days in the hospital
which included all the pictures of his transformation since he
first got sick. There were photos with hair and no hair, many
with his family, his favorite doctors and nurses, and of course,
those with Julia Roberts cuddling him on the bed.
John also captivated Dustin with this "shoot 'em
up" game that popped plastic beer bottles off a make-shift
gallery when you hit your target. Dustin reveled in his
precision aim and laughed with great glee out-shooting his
competition. He was all little boy who lived in the moment
despite his circumstances. I thought that day how ashamed I was
to ever complain about the little annoyances in my life.
I quickly understood why so many were enchanted by this
little wizard. His whimsical nature and warmth and startling
honesty made him the most extraordinary and inspiring being I'd
ever met. What also stunned me was his true curiosity about us
as well. He asked a gazillion questions about our world, the
names of my doggies and how John and I fell in love. Oh, how he
loved the love story! I would later learn from all his doctors
and nurses, as well as the other parents of sick children, that
this was a trademark of Dustin Meraz. He was known for always
asking about the lives of others and being more interested in
easing the pain of those around him than he was in seeking
comfort for himself. He truly seemed like a wise old sage
sharing that troubled body with an effervescent little boy.
I now had the same sense as everyone else who came to know
him. Dustin seemed as if he had a secret about life that people
live lifetimes to learn.
"So, I understand you want to make a little movie,"
I said. Dustin immediately said, "Yes, I want to make a
movie about kids with cancer. People only know that adults get
cancer. Oprah talks about breast cancer, breast cancer, breast
cancer. People need to know kids get it too, and it's not
easy."
The Make A Wish Foundation tried to get Dusty small parts on
movies or TV shows. In fact, he did appear as an extra on the TV
series, Precidio Med, but getting him that big movie role he
wanted was difficult. Movie schedules don't necessarily revolve
themselves around chemotherapy treatments, and the timing always
proved challenging. I was told Dustin was not sure that's what
he wanted his big Make A Wish to be anyway. When I asked him
why, he said, "If you were told you could have anything you
wanted, anything at all in the whole world, what would you
choose?" I understood. If I were told I was going to die and
get my last wish, I would have a hard time deciding as well.
Dustin never said his little film was a last wish, but he
certainly knew if he didn't make it, it would be part of his
legacy. I asked if he wanted it to be called, "Dustin's
story." "No, it should be called `Our Story,'" he
said, "This is not just about me. It's about all the kids
who get cancer. People need to know so they can care more and
help more."
Dustin thought making a documentary about his experience
might make a difference; not just in fund raising efforts or in
searching for a cure, but also for parents and kids going
through it. If they saw what he and his family went through
perhaps they wouldn't feel so alone or as frightened. And it
would definitely appeal to the actor in him; the little boy who
hoped one day to grow up and be a star who may never get that
chance. There was only one caveat. Dustin made us promise he
would call the shots. "When things get too hard," he
said, "you have to stop shooting." We had a deal.
So there we began "Our Story," the Dustin Meraz
project. John and I would go to his home in Palmdale and have a
dinner of carne asada, chicken, beans and rice with his whole
family. We took John's daughter, Joanna, and son-in-law, John
Nelson, with us to help as they both are in the entertainment
business. We had asked John's son, Jason, and daughter-in-law
Kristin to help as well, but they said with young children of
their own, they just couldn't deal with such a sick child; it
would be too emotionally crippling.
Dusty with parents Trisha & David
|
It was our first shoot. We met all the Meraz's. Dustin's mom,
Trisha, was his rock. A woman of amazing strength and character
who devoted every moment trying to save her son or help him live
out his days with as much love as possible. Every time she
cried, Dustin would hold her and round his pink plump lips and
draw in air. Then he would tell her to breathe. They snuggled
often and twiddled each other's noses. Dustin liked to pluck her
eyebrows and play with the mole on her chin. "I will always
remember this mole," he would tell her, at which point her
eyes would fill with tears again. "She cries a lot,"
Dustin would say.
His dad, David, a proud working class guy, managed a local
water facility and was obviously torn between having to put food
on the table and spend time with his boys. He showed me the pool
he had built for his sons which he finished just when Dustin was
diagnosed. To David, the pool was important because it is
something he didn't have as a boy. He was a proud Mexican
American man who worked hard and devoted his whole life to
giving his family a better life. As honest as all were with the
prognosis, David was the most in denial. As a devout Catholic,
he was relying on prayers to bring a miracle. Any discussion of
Dusty dying with was too painful.
Dusty's older brother, David Tyler, seemed to be hit the
hardest although he tried real hard not to show it. At fourteen,
a tough age anyway, he was getting little attention, but never
once complained. He visited his brother almost nightly at the
hospital when he was there and always on weekends when he wasn't
home. There were so many worries going on this kid's head; his
brother dying, wondering if he would be pulled out of school at
a moment's notice with the news, being left in the family to
pick up the pieces, knowing that even before Dusty was sick,
their parents were always fighting. He was the wisecracker in
the family. He told me I looked better in person than on
television and that he liked the girl who anchored the show
before me best. If Dusty died, he told me, he would be in the
better place. "Earth," he said, "was the real
hell reserved for people not good enough to be in heaven."
Then there was Kristi, David Sr.'s eldest daughter from a
previous marriage. She was very close to Dusty and to David
Tyler. She was the quiet one in the family, but she was always
there to hold Dusty's hand and play a game or eat an In and Out
burger with her brothers. She would be going off to college soon
and her whole life seemed to be changing, and no doubt lots of
fears were linked to it all.
We all sat down for a great Mexican dinner; I had already
started to dig in and enjoy the homemade feast when I realized
all were waiting to say grace before digging in. Dustin and
David teased me mercilessly. For the Meraz's, prayer was a real
source of strength. They prayed before every meal and at night
before going to sleep. Dusty told me, "We pray for every
member of the family, all of our friends, all the kids in the
hospital, the doctors and all the poor people in the world. And
of course we pray for God to cure me."
After dinner, Dusty took us on a tour of his small middle
class home with family pictures hung in every room. Dusty had
about a hundred stuffed animals, posters of his favorite movies
and lots of cards and drawings from his friends at school
wishing him a fast recovery.
I asked Dusty what he missed most since he was diagnosed. He
told me, "Going to school. I know that sounds strange, but
I miss going to school and being with my friends."
John and I filmed Dusty for a few months going in and out of
the hospital for chemotherapy treatments. We filmed him passing
the time by decorating the nursing station, cheering up other
patients and parents on the floor, and logging-on late onto the
doctors computers to play games. We filmed him watching American
Idol and the Bachelor, and zooming up and down the halls in his
wheelchair trying to stave off boredom.
And then there were the scares. We were also there for those.
The first was when Dusty was abruptly taken off the experimental
BSO. His liver counts plunged and Dr. Anderson, alarmed by the
sudden shift, summoned the entire family to his bedside.
"This could be it," he warned them, "Dusty could
die; the next twenty four hours are crucial." Waiting it
out was excruciating. There were so many tears. Dustin the
entire time was completely lucid and calm. "I'm ok,"
he told everyone, "I'm ok." And he turned out to be
right. Once again he surprised all and was the one to comfort
his family, especially his mom. "Breathe in...just breathe,
I'm ok."
Trisha told me the only reference Dustin ever made to her
about his dying was on one of the long drives from Palmdale to
the hospital. During the hour and a half long drive he told her,
"Mom, I have this feeling that God is calling to me and
that I'm probably not going to make it." Trisha, her eyes
filling with tears, asked what he meant by being called. "I
just feel it inside that God is calling to me. But I am going to
try and fight as long as I can."
When the BSO failed, it was a huge blow to Dr. Anderson. He
told me it was as devastating as when Dusty relapsed months
before. "Every odd is against this kid. We just can't seem
to catch a break."
"The only option left now, at least at this
juncture," said Dr. Anderson, "is another experimental
treatment called MIBG." It's an intense radiation therapy
that could potentially zap out the tumor and make Dusty eligible
for a bone marrow transplant that could give this boy a chance.
Childrens Hospital in Los Angeles didn't have this enormously
expensive treatment available in Los Angeles, so would have to
send Dusty to San Francisco where one of the only MIBG rooms
already had a long list of patients lining up to get in. The
goal now was to get him on that list and make it to MIBG. The
only obstacle, time, and a small lung infection he needed to get
over first before cementing a trip.
So Dustin again was forced to wait on borrowed time.
"That's what you have to do," he said, "wait,
wait, wait. We're always waiting."
And while he did, he continued to charm his nurses. His
favorite, Nurse Laura Dominguez, would come in and chat and
tease. "There is something really extraordinary about this
kid. He makes our job so worth while. Just knowing him, sharing
such intimate and happy moments with a little guy, despite what
he's going through, really makes you appreciate life. No matter
how much he goes through, he always has a smile, always is
concerned for others, and always has love to share. It's
amazing."
Dusty never seemed particularly ill during this whole
process. He was in such good spirits, rarely in any pain. He was
just nursing that small lung infection all were hoping would
quickly clear up so he could get to San Francisco. It delayed
everything; even his chemo treatments. Until his infection went
away, the doctors gave him only a low dose chemotherapy pill to
hold things at bay. Harsher chemo, the Doctors thought, might
further aggravate this thing going on in his lungs.
We watched the clock, counted the days and burned through a
lot of tape.
John and I got to know all the doctors very well. Dr.
Anderson worked such late hours. I would get to Four West after
my show ended at about 9:30 in the morning. John would meet me
there and spend the day shooting. We saw Doctor Anderson
morning, noon and late into the night treating the sickest kids,
and always stopping by to see Dusty.
We spent a lot of time with all the nurses, got to know the
other parents and patients on the floor, and even got to know
the researchers working tirelessly to find a cure for
neuroblastoma. Dr. Patrick Reynolds in particular was so
impressive. He would visit Dustin and even take him on a tour of
his lab to show him all they were trying to do to save him and
kids like him. We shot it all. We basically had the whole place
wired. And boy, did it give us new perspective. Again, after
both of us being so immersed in the entertainment industry;
where stars and movie makers reigned supreme, it all seemed now
more superficial than ever. Both of us marveled at the
extraordinary contributions of these life savers and their
surprising humility, especially in comparison to the
over-inflated egos and pomp of those who felt so high and mighty
in the entertainment business. It was truly astounding and a
real reality-check for us both.
It was about this time the most amazing twist of fate would
occur.
My husband, John, would receive a phone call from his son
Jason and daughter in law, Kristin. They are the ones who said
they couldn't possibly help in the Dusty documentary because it
would be too emotionally crippling. In a frantic phone call they
told us their baby son, Nash, just fifteen months, was headed to
some hospital in LA, but didn't know where. Nash, they said, had
some lump in his belly.
I happened to be on the phone with Trisha checking on Dusty's
lung infection from home. When I heard the news, I don't know
why, but I asked Trish to see if there was anyone new on the
floor. She looked around and said back in the phone, "Only
a blond woman with blue paint in her hair crying."
It was the most chilling revelation. Kristin was a bit of a
punker and had just streaked her hair with highlights of robin
egg blue to match her husband's Mowhawk. "Oh my God,
John," I said, "they're there!?
We rushed to Four West where astoundingly Nash and our family
had been admitted right next door to Dustin. Right next door! It
was surreal; completely unbelievable.
I kept the camera rolling as I watched Trisha and Dusty, John
and his children and grandchildren, become thrust into a bizarre
nightmare.
I shot the whole thing; the whole surreal and bizarre co-
incidence of it all. All the doctors we had come to know through
Dusty were now our doctors; all the nurses, our nurses. And we
knew so much of what John's young family was about to endure. It
was incredible and so frightening.
Trisha and Dustin and the entire Meraz family were dumb-
founded; completely astounded. But they all were right there to
guide Jason and Kristin through each painful step of the way. I
will never forget one shot of Dusty in his wheelchair looking at
Nash as his little eyes peered out from his mommy's shoulder.
Dusty waved to him, whispering, "Hi Nash. You'll be
ok."
Trisha couldn't have been more loving and giving to John and
his children. Just as we had heard from so many parents, they
rose to the occasion and gave all they had to give. The biopsy
confirmed this little fifteen month old baby did in fact have a
rare liver cancer. Trisha and Dustin were right there to let
them know what to expect next. Dusty even showed Kristin and
Jason his "baby," the port in his chest where he
receives his chemo. It gave both some understanding of what Nash
was in for as he went down to surgery to have his implanted.
Those first days and weeks Kristin was all tears. She
described it best as feeling like she had been hit by a bus.
Thank God she saw the lump and called the doctor. At first she
thought it was poo stuck in his intestines and that it would go
away. But the protrusion just kept getting bigger and harder and
she took him in. The referral to Childrens came like a freight
train. Her frantic call to Jason hit him like a bomb. "Meet
me at the hospital; Nash may have cancer!"
For John it was a most gripping ordeal. When he first saw his
devastated son standing in the sterile halls of that hospital he
knew so well, he immediately took him into his arms and held him
while he crumbled into his arms and cried. John's son and
grandson were in trouble. He knew now what lay ahead for them
after so many months with Dustin. His heart was breaking. But my
husband from the get go was a pillar of strength. I fell more in
love with this man every second as I watched how he rose to the
meet the needs of his family head on. He immediately assured
Jason and Kristin they were in the best place, with the best
care he could ever hope for, and that he would be there every
step of the way.
It's amazing how the universe works. If John had still been
CEO of his company, he would never have had the time to devote
to his son as he had now. And he never would have experienced
the depth of his ability to love and stand strong for his
children who now needed him more than ever. No one, least of all
John, would ever have imagined that leaving his title and
position after nearly twenty years as he did, would turn out to
be the biggest blessing that it was.
The days and months passed as we filmed every step of the way
of Nash's cancer treatments. It was an amazing experience to see
the Farrand and Meraz families in each other's rooms, supporting
each other and passing the time playing games and crying on each
others shoulders.
Dusty played with Nash; all of John's children and
grandchildren watched television and played video games with the
Meraz's. Even John's first wife, Diane, became friendly with
Trish. We filmed it all. Most amazing was the evolution of Jason
and Kristin. We filmed them as they transformed from parents who
looked like they were hit by a bus, into savvy medical experts
in control of their baby's care. The chemo seemed to be working
and shrinking the tumor almost immediately, which was the goal
in order to get the baby to surgery. At the time it was too
risky and too close to a major vein in the liver to remove
safely. Nash had a 70 percent chance of making it if that tumor
could be removed. If not, the odds were far worse, and of course
the risk of it spreading weighed heavily on everyone's minds.
We obviously were learning a lot about children's cancers. I
would never have understood what really goes on for families
just as a normal board member. This experience really brought it
home.
Every family I met touched my heart and gave me insight I
never would have had otherwise. Next door to Dusty and Nash was
a little boy named William. His mom was just a lovely lady and
could relate to the support and help Trisha was giving to our
family. "Trisha and Dustin did the same for me and my
son," she told me, "They were right there to hold my
hand as we went through it, too."
William was the most amazing kid; a little bald four-year-old
with a great spirit. He told me about the Chemo Crusader who
fights the cancer cells and kills them all. "He's a real
super hero with a great A-team to make sure all the cancers go
away." I told Kristin all about the book, knowing it would
help her with her other two girls who were at home while they
were all with Nash in the hospital. They, of course, were scared
to death about their little brother. One wondered if she too
would get cancer like her little brother, Nash. Kristin's
friends all came to the hospital to offer support and share
coffee breaks in the lower level cafeteria. The girl's school
was also a big support and put a Nash Flash up on the bulletin
board to keep all concerned apprised of his progress. Cancer is
an amazing affliction. I learned it affects not just the family,
but one's school, church, one's entire community of friends.
Meanwhile, Dusty was released to go home until his lung
infection improved. I filmed his goodbyes to Nash and the gang.
It wasn't twenty-four hours later that we got the call, he was
on his way back in terrible pain.
I could barely shoot the video. It was the first time I saw
Dustin suffer and it broke my heart. Roz, the social worker who
worked with Dusty and introduced me to him, warned me not to get
too attached. But after all that happened between us and our two
families, that was no longer possible.
I filmed Dr. Anderson as he and a team of Dusty's regular
nurses worked quickly to administer morphine into his veins.
Through the lens I cried as I watched this little buttery brown
boy squirm and writhe from the pain of tumor crushing through
the bone in his arm. Then at last, his entire body seemed to
uncoil. The drugs had finally taken effect. I was close up on
his face and saw the tension ease. I promised him always I'd
stop shooting if things got too bad.
It was the first time I knew Dustin as sick. Doesn't that
sound weird? I never saw his disease. I only saw his spirit, his
will, the beauty of his soul. Now I realized my friend might not
get his miracle. He might really die. I was in such denial. How
could this be? I was devastated. How could God let this happen?
It was so hard on Trisha. She had been through so much trying
to keep her little boy alive against all odds. David Sr. was a
wreck. And the Farrands could barely absorb the implications of
his pain. It was the first of many roller coaster jolts to come.
By the grace of God Dusty improved the next day and the days
after. The pain was again under control. His lung infection,
however, was still a problem and he was clearly not happy that
all he was receiving was a pill dose of chemo to hold things at
bay until it cleared up.
In an effort to cheer him up, Doctor Anderson, who earlier
helped him get a part as an extra on the show, Precidio Med. and
arranged the Julia Roberts visit, was scheming a whole new
surprise.
Dusty wanted a Screen Actors Guild card so he could be more
than an extra. John's daughter, Joanna, and her husband, John
Nelson, called SAG to make it happen. With Dr. Anderson's help a
surprise presentation was in the works.
Dustin receives his SAG card
|
We filmed it all. Dustin not only got a SAG card, but it was
presented to him by some pretty big movie stars. I couldn't get
these stars on my morning show, but they all turned up to meet
Dusty. It was so moving. Leonardo DiCaprio, Will Smith, Melissa
Gilbert, Steven Collins; all came down to fulfill the dreams of
a little boy.
I choked up during the filming at one point when Leonardo
leaned over and gave Dusty a big hug and a kiss. I heard him
tell this little boy how much he admired him for his strength
and courage. Leonardo was clearly moved. Tears were in his eyes.
He told me, "I don't know if I could handle what he's had
to handle. He's a special little boy."
These are the kinds of things that happened to Dustin. Little
things would turn out to be big things. But through the lens I
detected some sadness and a shyness I had not seen in him
before. His mom said he was just tired. It was a big day. His
dad, brother and sister all came to witness the big event. But
later on back in his room on Four West, I asked him with the
camera rolling, "Did I detect some sadness Dusty?"
"Yes, he said. "I am a little blue. This is all
nice and all, but it's just a moment. It doesn't last
forever."
This was the first time Dusty and I really talked about
disappointments. And it was the first time he acknowledged his
fears. Even sages are human. I quietly said to him from behind
my lens, "You're afraid to die, aren't you Dustin?" He
nodded his head slowly.
"Have you talked about it with your mommy?"
"No," he said, "I don't want to make her
cry."
That day Dusty opened up to me in a way he never had. He
explained how his cancer was like a very big fire burning out of
control that needed a lot of water or it would continue to
spread and kill everything.
He felt he was not getting enough water. He said, "Dr.
Anderson's concern is more for my social life than finding a
cure." When I asked him why he thought that was, he said he
didn't know. "I just don't know."
I think Dusty did know. I just think he couldn't deal with it
at the time. Child life specialists there who worked with him
told me, "Kids know, they just deal with what they can
moment to moment. They can't process the future, only the
now." And right now, Dusty couldn't take on the reality
that nothing more could be done. He had known it all along but
held on to hope. Now he saw his options truly disappearing, and
for the first time was brave enough to reach out.
I asked him some pretty deep questions. "Dusty, what is
the meaning of life to you?" He said, "Family,
friends, spending time together. It's not about money, clothes
shopping or your work. It's about caring."
"People," he said, "need to care more. They
always complain and are down about things. They should be happy
and enjoy their lives. Life is good."
Dusty and I talked about people taking life for granted. He
said he couldn't afford to do that. "Not one bit." I
asked him if God ever talked to him and he told me,
"Yes." When I asked what he heard, he told me it was a
private conversation. He did say though that he knew heaven was
a good place, a better place, and that the angels could visit if
people on earth really needed them. When we talked about his
funeral, he said he wanted angel cookies there. I asked him with
a smile, "Why angel cookies?" "I'm an
angel," he replied.
Throughout the filming I wondered if Trisha and the doctors
had been too honest with Dusty about his prognosis. Dr. Anderson
said each child deserves to be told the truth so they can deal
with their fears openly. He leaves open always the possibility
of a miracle, but tries to be as candid as possible. Trisha
adopted this philosophy early on. Dustin said it was better that
way because it gave him some control. He said it was scary but
that he would rather know the truth. I asked him what would
happen if he died. He told me bluntly, he would either
disintegrate or go to heaven.
Thank God Nash and the Farrands were all there to cheer Dusty
up that night. Once again all played in his room, and by
nightfall Dusty was again back to his old spunky self. The big
deal for the night turned out to be a fat juicy burger from In
and Out; Dusty's favorite. He ate only a couple of bites, but
boy did he enjoy it.
As Nash's tumor continued to shrink, Dusty's lung infection
continued to worsen. He was put on oxygen and told he would be
better off going home until things cleared up. This was a real
blow to Dustin who did not want to delay his trip to San
Francisco any longer. It was hard to see him leave. To lessen
the disappointment, John invited Dusty and the whole family to
take a spin on our boat in Marina Del Rey that Sunday if he was
feeling better. That put a smile on his face and gave him
something to look forward to.
That Sunday, Trish called and said he was too ill to make it.
Dusty's oxygen levels were really low and he was having a tough
time breathing. Dr. Anderson said a CT scan showed no signs of
tumor in his lungs and this infection should go away. She didn't
know what to do. I don't know why I said it, but I did,
"Bring him! Bring him anyway!"
The Face of Courage
|
We had the most amazing few hours. Dusty could barely sit up
straight but snuggled in a blanket in his mommy's arms. We sped
through the smooth waters as the sun, wind and spray from the
sea danced all around and cooled Dusty's face. He could barely
lift his head, much less his heavy eyes. Trish held him tight
and pointed out the seals and even the sighting of a whale. I
called to him, "Hey Dusty, glad you came?" He nodded
his head and smiled for the first time that day.
When he clearly had had enough we all hugged goodbye. His dad
lifted him in his arms as his sister, Kristi, carried the oxygen
tank connecting him away. I watched as Dusty was placed in his
wheelchair and wheeled up the ramp to the parking lot. I thought
how sad it was that a little boy who longed to ride on a boat,
had his day cut short by disease.
I didn't know it then, but Dusty went immediately from the
boat back into the hospital. His little heart was running a
marathon in that little body trying to get oxygen into his
lungs. He could barely open his eyes or even voice his words. He
had to point to a picture chart to let us all know what he
needed. Dusty was clearly dying.
His whole family held vigil. David senior was sure God would
grant him a miracle and spare his beautiful boy. Dusty's
grandfather and grandmother now came to be with him. I couldn't
believe it, the time had really come. Dusty held onto the oxygen
mask over his mouth and shifted it now and again trying to
adjust and readjust it to find some comfort. His chest was
heaving up and down.
Trisha and David held him in bed and whispered into his ear
how much they loved him. All the nurses on and off duty would
come in to stroke his hand or kiss his forehead. Julia Roberts
sent him a get well dog the size of a love-seat. That made him
smile even though he could barely open his eyes to see it. John
sat by his side and cried. He whispered into his ear, not to
worry, we would make sure David Junior was ok. We both knew he
worried about him.
Trisha was so amazing. She allowed all who loved him to say
their goodbyes. I was still on the show when Dusty was dying.
John said Dusty heard the television when I mentioned on the air
that I was pulling for him. I rushed to him as quickly as I
could after the show. I wanted to be there to help him across.
I filmed only a little of the dying process. It was too
intimate and too private. I promised Dusty when it got really
bad, I'd stop.
It was perhaps the most courageous thing John and I had ever
seen. This little boy willing himself to live until he could do
so no longer. Nurse Laura had gotten the call to come quickly;
that Dustin had called for her and Dr. Anderson. When Laura
arrived, she slung off her backpack and went to his side.
"I'm here, Dustin. I got here as soon as I could."
Dustin then told her he was so tired and asked, "If I go to
sleep, will I wake up?"
Laura in a soft soft voice told Dusty, "No
darling," and, "It's ok; it's time, it's time. You've
fought so hard. It's ok to let go now."
Dusty's faced frowned at her words as if still trying to hold
on to the hope of living. For a brief moment he moaned. In a
burst of fear he called for all in the room to recite the Lord's
prayer and the one where you say "if I should die before I
wake, I pray the Lord my soul to take."
All in the room held hands and spoke the words he so needed
to hear. It seemed to sooth him.
I was traumatized by his fear; traumatized by the loneliness
of his journey. I thought he was a little sage ready to embrace
his death. How could he be afraid now; I thought he had a
secret, a knowing. Where was that solace and wisdom now for him?
I was tormented with sadness.
When Dr. Anderson finally arrived you could see this was thee
most difficult moment of his professional life. He loved this
boy; tried desperately to save him. And now had to put all his
energy into helping Dusty die with as little pain and fear as
possible.
"I'm here too," said Doctor Anderson to his young
friend. Dusty asked him, "How will I die?"
"Gently," Doctor Anderson told him; it would not be
painful. "It will be like going to sleep, Dusty."
Doctor Anderson explained how he would give him more morphine to
help him on his way. He told Dusty he did all he could and that
it would be ok to go now.
Dustin labored harder and harder to get air into his body. We
would later learn he had only a walnut size portion of his lung
to suck air in as both lobes were completely overtaken with
cancer. What seemed like an infection was in fact tumor. That he
survived this long was simply another testament to Dustin's
sheer will to live.
When he could fight no more, Nurse Laura heard him whisper,
"I'm ready. I'm coming, I'm coming," as if speaking to
someone unseen.
Dr. Anderson exercised all he learned about palliative care;
helping the dying to cross over as pain free as possible and
with as much love and spirituality as dictated by the patient
and family.
Dustin's body was heaving and gasping now for air. The dying
process is so difficult to watch. Dr. Anderson upped the dosage
of morphine to make it easier, and intermittently took off
Dusty's oxygen mask to help minimize his suffering. The whole
family was there loving him, as hard as it was to witness. They
were there surrounding him with love and support as their little
boy finally allowed himself to go.
It was devastating for all who loved him, but especially for
Dusty's father, David. He sobbed, "I prayed for a miracle.
God didn't answer my prayers." When Dusty was gasping and
heaving in the final moments, he panicked and tried to replace
the mask only to remove it seconds later knowing it was the more
merciful thing to do.
David Junior, unable to bear the suffering of his gasping
brother any longer, ran from the room and collapsed, crying deep
inconsolable sobs onto the cold hospital floor. My husband, my
beautiful husband, scooped him up into his arms and held him and
rocked him for a long time until he felt strong enough to
return.
When he did, Dustin was gone. The room was so quiet and
still, and the shell of what used to be Dusty clearly had
released its life force. What was left behind, I thought, was
clearly not him. It was simply a flesh suit devoid of the spirit
and soul of my magical friend. I got this amazing sense he was
at last free. He did it. He crossed over. It was the most
courageous act both John and I had ever seen. John said it best,
"We just watched an angel being born."
As the family huddled outside the room, so many friends,
nurses, patients and parents came to offer their condolences.
Trisha stayed alone in the room to wash one last time her little
boy's body. It was the last time she said she could care for and
cleanse her baby. She said it was so healing. David Senior was
inconsolable and angry. God had betrayed him by taking his son.
He cried in that room for a very long time.
Then they took Dusty away. I only filmed a little of Dusty's
dying. It was too hard. I kept my promise to shut down the
camera when it got too hard.
It wasn't just hard for those of us who loved and learned so
much from him. It was especially tough on the other parents on
Four West. They know this could be their child in the days
ahead. Jason and Kristin were both devastated and frightened.
There was a terrible sadness that swept through the ward, and
all who walked through its halls on this day felt it deeply.
The memorial for Dusty was incredible. Dr. Anderson, Roz,
Nurse Laura, John, and so many others touched by this boy's
life, spoke about how he moved them and made them all embrace
life with more appreciation. We all thought how one's years on
the planet don't define the contributions they can make. Some
people live to one-hundred and never make the difference that
Dusty did.
It was hard to keep filming after he died. All of John's
family felt Dusty's loss deeply. It was lost on no one that
Nash's prognosis was so much better than that of Dusty's. In
some ways there was a small sense of guilt. Why do some kids get
spared and others not?
Our entire focus now was on getting Nash to surgery. Thoughts
of Dustin were with us constantly. We saw him in every face of
every child in those hallways. The day finally arrived, and
Nash, after months of chemo, was finally taken out of his
mommy's arms, crying, into the operating room.
The whole Farrand family waited and watched for five hours as
this little baby was taken away to one of the most difficult
surgeries the hospital performed. It was excruciating. We all
knew if they couldn't get out the whole tumor, Nash would be in
real trouble.
The hours clicked by and we burned through a lot of tape.
Jason and Kristin, nervous wrecks; on pins and needles. And
then, at last, the surgeon emerged in his greens. I was filming
the whole time, nervous as hell. All were silent waiting for him
to speak. And when he did, Kristin and Jason fell into each
other's arms and cried. They got it all. The tumor was dead.
They were able to excise the tumor and part of the liver. We
were one of the lucky ones.
We have continued to film Nash's recovery and his remaining
chemo treatments as we wait for a 100 percent clean bill of
health. And we still have to interview the leaders of the
Children's Environmental Coalition which insists children's
cancers are caused by toxins in the environment, especially in
low income minority communities. I also have to follow up with
Trisha who is now back at the hospital, volunteering to help
other families going through what she did. And of course I'm
waiting for Dusty's gravestone to be finished so I can shoot his
grave site, which I am told is right next to a field of gorgeous
orange poppies. How he would have loved that.
We have a lot of work yet to do but I am hoping to complete
the documentary this summer as my promise to Dustin. I keep his
pictures on my desk to remind me every day how precious life is
and how brave is the spirit of a child.
This was all just seven months ago. I had just gotten
married, John had just left his job, we were both looking for
new meaning and direction in our lives. We certainly got all
that and more. Coincidence? I don't think so.
Dusty Meraz
|
This little guy taught us what the simple joy of living and
loving is really all about. He taught us how very sacred the act
of caring and sharing ourselves with others really is, and how
much it can make a difference in every life touched. He taught
us to have courage and faith in the face of fear. But most of
all, he reminded us both to take life by the reigns and live it
fully to the brim, and to give thanks for every breath.
There's an old saying I think of now more than ever;
"Life is not measured by the number of breaths we take, but
by the moments that take our breath away."
Although one child died and another lived, all who shared the
journey with these remarkable children and their families has
been profoundly enriched and changed. We learned how little it
takes to reach out and care, and how much more could be done if
we cared a little more. It's like a stone tossed into calm
waters. One never knows how far the rings it casts extend out to
sea, or how the tides might change as a result of its tossing.
John thinks little about his former business and I have much
less interest in whether I rise and fall in a fickle industry.
We've actually just bought a new home in Fiji that has coconut
trees, papaya trees, pineapples and limes and lemons on the
property. A bit of a stretch for us right now? Absolutely. Did
we care? Absolutely not. With all the spirit of a child running
free we said, "What the heck. Let's live."
The documentary Our Story was completed in March 2005.
by Giselle Fernandez-Farrand
Watch a video preview of the documentary.
Follow up:
Angel Martinez' mother, Cecilia, advises that her son died peacefully.
Jason and Kristin Farrand report that Nash, now 3-1/2 years old, is going on
2 years in remission. He must remain in remission for 5 years before tests can be stopped.
Presently, Nash goes in for blood work every 3 months and gets scans of his chest and
abdomen every 6 months. Nash is a happy and healthy little boy. Mother, Kristen, is staying
involved with Childrens Hospital by taking family portraits for the 4th floor cancer ward
patients and staying involved in raising donations for the hospital.
The Meraz family is still having a difficult time dealing with Dusty's loss.
Dustin would have celebrated his 13th birthday in August 2005. Five months after his
passing, Dustin's mother, Trisha, organized a celebrity golf tournament in Dusty's memory
at the Rancho Vista Golf Course in Palmdale which raised over $10,000. The Meraz family
has also started the non-profit Dustin Meraz Foundation called "Remember Me" for families with cancer.
Six-thousand eight-hundred children are diagnosed with cancer in the United States
each year. One-thousand five-hundred die annually. Cancer doesn't just end when the afflicted
die, it's a disease that leaves families devastated in its wake.
If you would like to make a donation to Childrens Hospital
in the name of Dustin Meraz, please follow the link below or mail your donation to:
Childrens Hospital Los Angeles
Attn: Donor Services
4650 Sunset Blvd. MS29
Los Angeles, CA 90027
Phone: 323-669-2308
CHLA Secure On-line Donation Form
Watch a video about Childrens Hospital Los Angeles
Visit the Noche de Ninos Gala Photo Album Oct. 2, 2004
