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Dusty's Dream

a true story of courage by  Giselle Fernandez-Farrand          

   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.
Dusty and Love on 4 Paws pooch, Claire

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

© 2005 Skinny Hippo Productions
This story is the property of Giselle Fernandez-Farrand and Skinny Hippo Productions.
Reproduction in whole or in part is forbidden without written permission of the author.