Originally published July 12, 2006. Fourth of four parts.
Cyndie French is out of the house for the first time in days.
She is sitting at a pizza parlor with other American Cancer Society volunteers, chatting about an upcoming charity event. She is trying, for just a couple of hours, to distract herself from the fact that her youngest boy, Derek, has cancer and her oldest son, Anthony, has disappeared.
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Suddenly a gaunt Derek pushes through the restaurant's door, looking like a punch-drunk boxer. He has a shiner around his left eye and a pained look on his face, and he is stomping toward them.
Derek has come here, with a reluctant Grandpa Patrick Degnan, to scold Cyndie.
Mom! he yells. What are you doing here? You need to be home with me! I'm the one with cancer! Me!
Cyndie is momentarily speechless.
Everyone, she says finally, putting her hands on her son's shoulders, meet Derek.
Derek is 11 and battling neuroblastoma, a cancer of the nerve cells. The disease has spread throughout his body, and his pain is relentless. He spends his good days creating virtual universes on his computer and his bad days writhing in bed.
The bruising on his face is from the cancer, which is invading the orbit of his eye. He has trouble catching his breath because the tumor has wrapped around his aorta, the main artery from his heart.
UC Davis Pediatric Hospice nurses now come regularly to the family's home to try to make Derek more comfortable. But it is Cyndie's attention that he demands, 24 hours a day, every day. Tonight he ordered Grandpa Patrick to bring him here.
Come home! he yells, as other restaurant patrons watch in horror. Fix me! Let's go!
Cyndie can feel her face turning red. She has heard words like these many, many times before.
She asks Derek to sit beside her and convinces him to stick around for a slice of pizza. As she finishes her meeting, he is content.
For Cyndie, the volunteer work is survival, a way to feel productive and forget, for just a while, that her bank account is negative and her family is falling apart.
Cyndie, a single mother of five, has lost almost everything to Derek's cancer. She has given up her business -- a tanning and nail salon -- to be with Derek around the clock. Sometimes she can't pay the rent on time. Her family lives on proceeds from car washes and raffles and spaghetti feeds.
Her daughter Brieanna, who is 6, has moved in with her dad in Orangevale. Derek's brothers Micah and Vincent are getting counseling at school, but they are distracted and are failing classes at River City High School.
Cyndie's oldest son is 18 and an adult, but she is worried about him, too. Anthony left home in August after he and his mom had a horrendous fight about whether they could afford an Internet hookup for him.
At first, he kept in touch by cell phone, telling his brothers he was OK and living with a friend. But no one has heard from him in a while. Cyndie is working her connections at radio stations and the West Sacramento Police Department to track him down. So far, no luck.
Life has never been harder or more complicated for Cyndie. But she is unwilling to sacrifice the charity work, which she believes may be Derek's legacy, the answer to the questions she has been asking herself since his diagnosis on Thanksgiving Day in 2004.
Is there a reason for all of this? What can she learn from it? What good can come of it?
She is still pondering those questions weeks later while rushing from grocery store to party store, assembling volunteers and hustling food for a fundraiser.
Her cell phone rings. It is Jonathan Ducore, a UC Davis pediatric cancer doctor, with results from Derek's latest body scan.
The tumor, Ducore tells Cyndie, has invaded the base of Derek's brain, the area that controls breathing. It is in his lungs. It is in his liver, which is why Derek's belly is bloating, making him look like, as Cyndie says, one of those starving children in the magazine ads.
His time is very short, Ducore tells her. I'm so sorry.
The long winter has finally given way to spring. Outside, the azaleas in the front yard are brilliant with pink blossoms.
Inside Cyndie's home on Jamaica Street in West Sacramento, a Do Not Resuscitate order is taped to the refrigerator door.
Down the hall, in Derek's room, Cyndie is kneeling next to her son's bed, where she has been for most of the past week. Her face is blank and her feet are bare. A George Winston piano solo is playing softly on a boombox on the floor.
Derek is asleep, finally, after hours of relentless screams and demands for a cure. His arms, folded across his Star Wars blanket, are like matchsticks. His skin has taken on a bluish tinge. His left eye is half open and glassy. Above his bed is a photograph of swimming ducklings and a Styrofoam takeout container signed by his favorite waitress at Nick's Diner. "Hang in there, honey!" it says. "See you soon!"
Cyndie runs her fingers through Derek's brown hair, which last week was longer and starting to curl on the ends. Cyndie took him to Supercuts, collected the clippings from the floor and his shoulders and stashed them in an envelope, just as she did when he had his first haircut.
What day is it? Cyndie is not sure. She is surviving on vitamin water, steak burritos from Chipotle and determination, having slept just 16 hours over the past five days.
She closes her eyes for a couple of minutes but wakes when Derek starts to squirm.
"It's OK, my little man," she whispers, burying her face in his neck. "Pretty soon you will be able to run and play and skip again, and do everything you want to do."
The tears fall quietly at first. Then Cyndie curls into a ball on the floor and begins to sob.
Her best friend, Kelly Whysong, wraps an arm around her and searches for the right words. She is a mother, too, and her daughter Nichole is a good friend of Cyndie's older boys.
"I'm not going anywhere," she tells Cyndie. "I'm here for you."
Grandpa Patrick, up from a nap, peeks into the room. Vincent and Micah are making noise in the kitchen, heating up a frozen pizza. The church pastor and a UC Davis hospice nurse are supposed to stop by later.
Throughout the day, Cyndie tells visitors story after story about Derek. How she went into labor with him on her 29th birthday. How, on his first day of kindergarten, he chewed a hole in his shirt. How, beginning when he was about 4, he took smokers to task for their unhealthy habit. As she talks, she rubs Derek's legs with lotion, slathers Chapstick on his lips, and gives him morphine and Ativan through his chest tube, noting each dose on a piece of paper next to his bed. Even in his sleep, Derek torments Cyndie, telling her to "Fix me" and accusing her of being a bad mother.
"I know he doesn't mean it," Cyndie says. "It's the disease talking. It's his pain."
In her free moments, Cyndie scribbles in her journal, which sits on a bedside table along with bottles of saline solution and syringes filled with pink liquid.
"I am numb, afraid," reads today's entry. "Anticipating a final moment, a final burst of 'I Love You.'"
When will it come? She does not want to miss his last breath. "I just lay here, day after day, praying that God will end his suffering," she says.
"Why him?" she asks herself. "Why me?"
Then she gives herself a pep talk.
"Everyone has to go through something," she says. "At least I have had him for 11 years. I have four other great kids. I have a roof over my head. God has his reasons for all of this. Things will get better. Keep the faith."
One evening at about 11, Anthony shows up on the doorstep.
"He looks like Jesus!" Cyndie says of his flowing hair. Anthony has been living in Elk Grove and working at an import store. He is crushed about Derek, he tells his mom and brothers. He wants to make peace with everyone.
"It's a miracle," Cyndie says.
It may sound strange, she says, but Derek's ordeal carries with it some blessings.
As his condition has become more grave, his older brothers have started cleaning up their messes without being asked and telling their mother they love her and appreciate her sacrifices. Micah holds Derek's hand as he lies in bed, and tells his mom that "if worse comes to worst," he will see his brother in heaven. Brieanna, when she visits, draws Derek pictures and offers him pennies from her piggy bank.
Still, the stress in Cyndie's household is always just beneath the surface, and one April day, shortly after Anthony reappears, it boils over.
"Are you going to help with the rent this month?" she asks Patrick Degnan, the longtime friend her kids know as Grandpa. "What about the car payment?"
Degnan pitches in with bills and chores and caring for Derek, but he recently got laid off from his job driving a shuttle bus at the airport and is struggling financially, too. Soon, he and Cyndie are standing in the living room, pointing fingers at each other and hurling ugly words.
Cyndie tells Degnan to leave if he is so miserable. "Fine," Degnan says, and he storms down the hallway.
"Where's Grandpa going?" Derek asks weakly from his seat on the sofa.
In her heart, Cyndie doesn't want Degnan to leave. She quietly sends a friend to move the car down the street, where he can't find it.
Grandpa Patrick ends up staying, and all is forgiven the next day.
But Cyndie is devastated about the whole thing, and far more afraid about the future than she lets most people know.
Lately, she confesses, she has been envisioning Derek's small head in a casket. She tries to push the image out of her mind, but it keeps coming back.
On an unusually quiet May afternoon, Cyndie picks up the pamphlets that hospice staffers have left for her and starts to read. "Gone From My Sight," one of them is titled, "The Dying Experience."
She learns that Derek may hallucinate in his final days, that he may have a spurt of energy and lucidity near the end. She reads about how the body shuts down, little by little. The appetite. The kidneys. The lungs. The heart. Her little boy's heart, which she now can practically see beating through the skin of his wasted chest.
Cyndie summons Grandpa Patrick to sit with Derek, and pads into her bedroom. She curls up on the bed and dials the number for the funeral home. She has cobbled together a bit of money from friends and fundraisers and is going to try to cut some sort of deal for Derek's funeral service.
She has thought about calling basketball superstar Chris Webber, who has befriended Derek, for help, but she doesn't want to take advantage.
"How do I this?" Cyndie says softly to herself. "No one ever prepares you for this."
She clears her throat.
"Hello?" Cyndie says into the phone. "Hi. I, um, I'm calling for my son. He needs a nice resting spot."
She pauses, puts on a brave face.
"He's 11. Eleven years old."
"Are you ready for this?"
Sue Kirkpatrick, a UC Davis hospice nurse whose soft features and comforting voice make her seem like an old friend, is holding a syringe filled with Versed, a powerful sedative.
Derek's cancer has thrown him into a state of "terminal agitation," and Cyndie is desperate for help.
"Last night," she says, "he told me he wanted to die. He said, 'Mom, I love you. Please stop the pain. Please kill me.'"
Cyndie shakes her head. "I just can't stand to see him suffer anymore."
The Versed, Kirkpatrick explains, will put Derek into a deep sleep, a sleep from which he may never awaken. He may never again tell Cyndie that he loves her, or complain about his pain, or order her to fix him. He may never again ask for a Red Bull or a sherbet push-up, or pet the black kitten he named Phoenix. He may never utter another sound.
Earlier today as she watched Derek, confused and wailing, try to stand on spindly legs, Cyndie was sure she wanted him to get the drug. But now, as she thinks about the idea of never hearing Derek's small voice again, she is questioning herself.
Is it the right thing? Is it too soon? What could she have done differently? What if she had taken him for one more radiation appointment? More chemo? Would he have suffered less? Lived longer?
She puts her head in her hands and starts to cry. "I've done everything I know how to do to help him," she says. "I tried and tried to make him better. I don't want to let go, but I can't fix him. I can't fix him, Sue. I guess this is where I have to go."
Derek is lying on the sofa, wearing a sleeveless basketball shirt, a diaper and blue slipper-socks. He is taking long, gurgling breaths. For days, he has been in a dreadful cycle of sleeping for a few minutes, then waking and flailing and falling asleep again. His skin is gray and his eyes no longer see. He cannot eat or drink, and he is so thin that his bones seem ready to poke out of his skin. Cyndie has shaved his hair, which over the last couple of days had been falling out in clumps.
"It's natural that you're having 'What ifs,'" Kirkpatrick reassures Cyndie, patting her hand as they sit at the kitchen table. "But there is nothing wrong with this. This will allow him to die peacefully."
Cyndie nods her head, wipes her eyes with a paper towel. She slides the consent form toward her on the table. With a shaky left hand, she signs it.
"OK," Fitzpatrick says a few moments later. "Let's go do this."
Four teenage girls, friends of Cyndie's older sons, have gathered in the living room around Derek. Big brother Vincent comes home from school and surveys the scene with silence and a stoic face. Kelly Whysong, Cyndie's friend, shows up, along with church pastor Kurt Berger and his family. Hugs are exchanged.
Kirkpatrick kneels next to Derek, holding the syringe of clear liquid. Slowly, she empties it into his chest catheter, and almost immediately his breathing seems less labored and his limbs appear to relax.
It is just after 5 p.m.
"I want to hold him," Cyndie says.
She lifts Derek from the sofa, puts him in her lap and starts to rock him, as though he were an infant again. His long legs dangle from the left side of her rocking chair. His head rests in the crook of her right arm.
She asks Vincent to put Andrea Bocelli on the CD player. "Number 14," she says.
The song is "Because We Believe," and Cyndie, in a whispery voice, starts to sing along.
"Once in every life
"There comes a time
"We walk out all alone
"And into the light...."
Cyndie kisses her son's forehead, her tears splashing onto his face.
"It's OK, baby," she says, over and over. "I love you, little man. I love you, brave boy. I love you. I love you."
Seven hours later, Derek is gone.
The following Saturday, Cyndie is standing amid thousands of other people at Sacramento's 10th annual Race for the Cure for breast cancer.
She looks around at all of the cancer survivors and their relatives and friends. Some are smiling and cheering. A woman who has been free of cancer for more than 20 years introduces herself, and Cyndie breaks down in her arms.
In her head, Cyndie is making plans for her son's funeral. Chris Webber has come through for Derek again, and so has the West Sacramento Fire Department, so she can give her boy a lovely service and a proper burial at the bottom of a small hill at a cemetery in Fair Oaks.
After she gets beyond that terrible day, she says, she will help cancer patients and their families. She is thinking about forming a nonprofit group to pay for practical things like rent and gasoline and respite care. Maybe she can spare other families some of the misery she endured.
She has already chosen a name for the organization. It will be called Derek's Wish.
But first, Cyndie needs to pick up the pieces of her own life. She must find a job, make arrangements for daughter Brieanna to move back home and get her older sons on track with their schooling.
Cyndie has received the first Social Security check for Derek more than a year after she first applied. But the $1,040 payment is already spent, and no other checks will be coming now that Derek has died.
Each morning, Cyndie wakes up looking at Derek's face, in photos on either side of her bed. On the seat of her car is his blue baby blanket. She can still smell his skin and hear him calling to her.
Though her house bustles with teenagers most days, and is filled with the sounds of the chirping chicks and ducklings that she picked up at a pet store, it somehow feels empty.
"Everything reminds me of him," she says.
Yet, like the biblical character Job, Cyndie has not given up on happiness nor lost her faith.
"I still love life," she says. "I love people."
In the Bible, Job declares that the Lord gives and the Lord takes away. Cyndie has a new understanding of that sentiment now.
"My little man was really special, and I was so lucky to have him," she says. "I guess God just wanted him back."
On Mother's Day, the very next day, Cyndie and her entire family get up early. It's Sunday, she tells everyone, so we're going to church.
In the converted school gym that serves as a gathering spot for Journey Christian's congregation, Cyndie, Brieanna, Micah, Anthony, Vincent and Grandpa Patrick bow their heads and close their eyes. Banners on the wall above their heads speak of hope and mercy, and Pastor Berger lights a candle in Derek's memory.
If Derek were here, Cyndie says after the service, we would be going to Nick's Diner. So they do. On the table, Cyndie arranges a carnation next to a bottle of Derek's favorite Tabasco sauce as a sort of memorial.
Then they head off to another sacred place, a park where Derek spent endless hours running in the grass.
Soon Cyndie and Brieanna are chasing each other, squealing and laughing in the glorious sunshine. Tag. You're it. Cyndie grabs Brieanna and lifts her to the sky.
Derek is here, too.
On a park bench just a few yards from where they are playing, Cyndie has propped a photograph of her youngest son.
He is 7 years old, decked out in a black tuxedo with a blue vest and tie, smiling his dimpled smile.
How This Story Was Reported
Cynthia Hubert and photographer Renee C. Byer met Cyndie French in May of 2005, about six months after her son Derek Madsen was diagnosed with cancer. French invited the journalists to observe all aspects of the boy's care and document its impact on him and his family. For the next year, Hubert and Byer spent countless hours with Derek and his friends and relatives at home, on family outings, and during doctor visits, blood transfusions, surgeries and other treatments. Bee journalists witnessed all but the first scene in this story. To gather information for this scene, the reporter interviewed Cyndie French the morning after the incident at the pizza parlor.
Cyndie French, on why she let The Bee into her life:
"I felt that if people could get something out of it, if just one person did, then I felt that I had not done this in vain...
"And exposing myself was very real - and it was hard, because I was questioned by several people why I would allow myself to do this, that it was not right for Derek to have this. I just felt like in my heart that it was right for our particular family.
"I felt like I could judge that and figure that out, and if it became a problem after we started, then I felt like I could say, ‘OK, I'm done, I can't do this anymore.’ But that's not what happened.
"I believe that there’s a reason why I am going through this, there’s a reason why this happened, there’s a reason why this should be brought to light...
"I just think that it’s so important that people understand that you can open yourself up to any family that’s going through this and you can get something out of it... You have no idea how much that will mean, just a few minutes of your time, just a few minutes. If I can get that across, to just one person, then I feel like I have done what I have come here to do."
The family still faces medical bills. The Derek Madsen Fund is account #3110191727, c/o Washington Mutual Bank, 801 K St., Sacramento, CA 95814.
After her son's diagnosis, Cyndie French signed on as a volunteer and committee member for thelocal chapter of the American Cancer Society. For information about the organization and how you can help, contact (800) ACS-2345 or go to www.cancer.org.
Robin Raphael, another Northern California mother who lost her son to neuroblastoma, runs the Keaton Raphael Memorial, a nonprofit group that helps children with cancer and their families. For more information, call (916) 784-6786 or go to www.childcancer.org.
Cyndie French got help caring for her son at home from the UC Davis pediatric hospice program. The National Cancer Institute offers a wide range of information about hospice care, including where it is available and insurance considerations. For more information, go to www.cancer.gov/cancertopics/factsheet/support/hospice.
- Cynthia Hubert