warning....this might make dust pop up in your room causing your eyes to water
Forest Thompson lifts his 15-year-old son into a whirlpool. The boy can no longer speak. He can barely move. This is the last time Forest will ever hold him.
Silence — and memories — fill the room.
He’s the boy who traded his dream of meeting Beyonce for a final vacation with his brothers and sisters: “I want us to go on a big family trip, all of us together. Can we do that?”
The warrior who awoke from brain surgery, smiled and said, “When can I go back to school?”
The proud student who walked across the stage at 8th-grade graduation without his knit cap, revealing his surgical scars: “I don’t care what they say today!”
That boy, he’s slipping away.
Charles Ray Daniel endured eight surgeries, countless rounds of chemotherapy and radiation, and a bone marrow transplant to treat his brain cancer. For two years, no matter what was thrown at him, Charles figured out a way to smile and crack a joke. He’d bust into a Tyler Perry “Madea” skit. Or he’d quote Snoop Dogg: “Drop it like it’s hot!”
The Thompson Family
The family comedian, Charles enjoyed quoting Tyler Perry, playing practical jokes and dancing. And, like so many teens, Charles loved Beyonce. His biological father, imprisoned for life, asked Forest and Tremica to raise him.
The patriarch of the family, he resembles Atlas: strong, resilient, trying to carry family on his shoulders through the defining moment of losing Charles. Since his son’s death, he has started his own business to allow more time with family.
Tremica is the rock of the family who holds everyone together. “If I break, everyone breaks.” Of Charles’ terminal illness, she says, “We can’t change it. We can’t go around it. We have to walk straight through it together as a family.”
The oldest of the siblings, Nate projects calm. He believes it’s his duty to remain strong for his brothers and sisters. His message to other siblings: “Why argue and fight? Life really is just short. You don’t have time for that.”
He’s the Hollywood-handsome dancer, personable and fun. He and Charles shared a room and, his parents say, became so close they were like twins separated at birth. “We created a bond together. I like taking care of him.”
She is the outgoing singer with a sensitive streak. Charles protected her from annoying boys, saying, “Get away, get away, get away!” She misses him but is happy he “won’t suffer any more.”
The youngest in the family, Ariel doesn’t talk about her brother’s condition. She provides a note of levity, carrying a camera around George Mark and ordering people to smile. She hopes to become a photographer one day.
Forest and Tremica Thompson brought their son and his siblings to George Mark Children’s House, a pediatric palliative care and hospice center just outside Oakland, when caring for Charles at home became too daunting.
The place is beautiful, set amid plush gardens, high on a hill. No family wants to make the journey. Yet those who do discover their own resilience.
It’s Tuesday, January 11, 2011, their 16th day here.
Charles hoped to become a child psychologist. He wanted to help troubled kids. He knew what that life was like.
Charles fell into the family’s arms in November 2007. Tremica’s cousin, Charles’ biological father, had been imprisoned for illegal possession of a firearm, his third felony conviction in California. That made Ray Charles Daniel a lifer.
“Will you take care of my son?” he asked.
“Absolutely,” Forest replied. “You always take care of family.”
Charles was 13, in foster care with the state. His father was in prison; his mother had abandoned him. He’d never known stability, never had a childhood.
Forest and Tremica’s goal was simple: to let him be a boy.
The hydrotherapy room grows dark as the sun drops behind the horizon. The whirlpool lights up with an array of colors: purple, yellow, green. As he floats in his father’s arms, Charles’ breathing slows to a hush.
A child’s life grows in water in the womb, and now, Dad is helping midwife his son into the next transition.
It’s a way of holding on while letting go.
Two days earlier, Forest shuffled down the hall of George Mark Children’s House. At 6 feet, 240 pounds, Forest resembles Atlas, the weight of the world on his shoulders. Today, everything is bearing down.
It’s like that when your son is dying.
Questions clutter Forest’s mind: Is there really nothing left to help my son? Is he in pain? What will it be like at the dinner table with an empty seat? Am I communicating enough with my other children?
Forest, 39, rounds the corner into Charles’ room. The boy holds up his left hand for his dad. The two lock hands. Charles smiles. And for a brief moment, so does Dad.
Tremica, 37, watches her husband and son. She is the family rock, the powerful matriarch helping everyone cope with the tragedy that’s brought them here. She places her hand over her heart. “Charles is on a journey,” she says, “and he’s going home soon.”
Palliative Care in AmericaVolunteer George Warren wheels a patient through George Mark.
Doctors and nurses traditionally have been slow to address the possibility of patients’ deaths, especially when those patients are children. But in the past decade, that paradigm has shifted.
In the early 2000s, only a handful of hospitals had palliative-care programs aimed at maintaining quality of life for the terminally ill. Today, more than 80% of hospitals have palliative-care programs, says Thomas Smith, director of palliative care at Johns Hopkins medical institutions in Baltimore.
The shift, he says, is a result of the medical profession listening to patients. The fear of dying is the “existential threat that runs through every conversation and every thought” a patient has upon diagnosis.
“We are getting to the point as a nation where we can have some of these tough discussions,” he says.
Doctors and medical professionals, he says, must discuss the seriousness of an illness at the outset, “saying ‘these are the possible outcomes,’ and then remember to bring it up so we know what people’s choices are.”
“It’s never easy,” he says. “I will tell you, as a doctor, it’s very hard to sit down with another person, whether they’re young or old, and say, ‘There’s nothing medical science can do to make you live longer or better.’”
Facilities like George Mark Children’s House are rare in America. In fact, there are only three such facilities dedicated solely to children, because insurance companies until recently have been unwilling to reimburse the benefit.
Britain, by comparison, has nearly 40 child hospices. Catherine, the duchess of Cambridge, recently visited one in Ipswich, saying the “feelings of love and hope offer a chance to families to live a life they never thought could be possible.”
“It’s not just Charles’ struggle,” Forest says. “It’s our struggle as a family.”
In a culture where accepting the inevitable death of a child remains taboo, Forest and Tremica talk openly about their journey, providing a rare glimpse into how parents hold their family together during such a defining moment.
“When you hear a word like ‘cancer,’ the first thing a parent thinks about is: Is my child going to die?” says Nancy Hutton, medical director of Johns Hopkins University’s pediatric palliative care program in Baltimore.
Trained to focus on sustaining life, doctors and nurses traditionally have been slow to address the possibility of death, especially when their patients are young. But in the past decade, that paradigm has shifted, Hutton says. Health professionals are encouraged to talk about end-of-life care when cancer is first diagnosed.
“As a society, we have a lot of information about how to bring a child into this world,” says George Mark co-founder Barbara Beach, “but there really is very little for parents who are looking at the prospects of losing their child, of having to escort and support their child through the process of dying.”
George Mark Children’s House is a rarity in the United States: a place solely for children and their families to come during such a traumatic time. Largely supported by private donations, the facility allows families to stay for free. Volunteers cook meals. A tutor helps patients’ siblings keep up with missed schoolwork. A team of supporters — a social worker, a psychologist, a child-life specialist, a chaplain, doctors and nurses — meets with the family regularly to offer guidance. Pets are allowed, too. Anything to provide normalcy at a time when nothing is normal.
Charles’ parents decided to include his siblings — Nate, 19; Trayshaun, 17; Shaunee, 12; and Ariel, 6 — in the dying process. They wanted their children to learn that death is not to be feared, that families stick together in times of crises and, most of all, that Charles, whom they legally adopted in 2010 as he fought his brain tumor, needs each of them as death approaches.
Nate is the family’s athlete, pensive and quiet; Trayshaun is the Hollywood-handsome dancer, outgoing and personable; Shaunee is the promising singer with a sensitive streak; and young Ariel is the budding academic. During this week in January 2011, the family will lose its comedian.
By sharing their experience, Forest and Tremica hope to help someone else with a dying child.
“No parent wants to bury a child,” Tremica says. But those who must, she says, “need to know they’re not alone.”
“We can’t change it. We can’t go around it. We have to walk straight through it together, as a family.”
Life and death inside George Mark
Trayshaun runs his fingers through Charles’ hair. He styles the curls straight up in the air. His brother stares back at him, his deep brown eyes transfixed.
“Quit the mohawking,” Dad says.
Charles glances across his room, almost in slow motion, taking in everyone who surrounds him.
Trayshaun pokes his brother’s nose. Charles fends him off with his left hand, the only limb he can move.
“Blink once if you want me to punch Trayshaun in the face,” Dad says.
Charles blinks. The room erupts with laughter.
Around Charles’ wrist is a rosary. His brothers bought it for him after a child died in a neighboring room. Though Charles has lost most of his mobility, he finds a way to shift the rosary so he can clutch the cross between his thumb and index finger.
His brothers wear rosaries around their necks. They have kept vigil in Charles’ room ever since the family arrived on December 27, 2010, from their home in Stockton, 60 miles away. One sleeps on the floor, the other in a nearby bed. If Trayshaun leaves the room, Nate stays behind. They want Charles to know his brothers have his back, always.
George Mark Children's HouseHandprints of former patients and family members at the George Mark house decorate an activity room wall.
George Mark Children's House became the first children's hospice in the nation when it opened in 2004 in San Leandro, California. The facility, however, provides more than end-of-life care. The staff helps children who have debilitating diseases and critically ill conditions undergo therapy in a comforting environment.
Pediatric palliative care, as the field is known, aims to provide children and their families with a better quality of life by providing support during extremely stressful and difficult times.
George Mark is the brainchild of two doctors: a child oncologist and a psychologist.
Barbara Beach, the medical director, worked as a pediatric oncologist for more than 30 years. She wanted a place where a child could receive all the medical care he or she needed “and the entire family could be cared for.”
With most hospitals, she says, it is very difficult “for the extended family to really be a part of that child’s life and for that child to fully live their life for whatever period they have left.”
She realized the need for such a facility in the 1970s, when one of her patients dying of cancer “wanted nothing more than to go home.” The patient’s insurance company refused to pay for a hospice nurse, and he died in the hospital. “That left quite an impact on me.”
Kathy Hull, co-founder and clinical psychologist, says the gift that George Mark provides is to bring families together during the most defining moment of their lives. People “approach with trepidation: ‘Oh, my gosh, children die right here.’ But rather than focusing on a child’s death, we are celebrating their life.”
“The decision that the parents ultimately make is a gift. They’ve watched this little person be poked and prodded and sick from chemotherapy and have a series of surgeries, and he or she isn’t getting any better: How much more do we want to subject this little person to?”
The facility is named after two of Hull’s brothers: George died in 1969 at the age of 30 in a hospital that couldn’t manage his pain; Mark was killed in an auto accident at the age of 16 in 1962. “I lost two brothers by the time I was 25.”
She became a psychologist to help families navigate grief.
George Mark is a nonprofit organization. Private individual donors have traditionally been its biggest supporters, along with some corporate donations. With the struggling economy, donations have shrunk.
Insurance companies initially were slow to pay because there was no protocol in the United States for such treatment. But Beach and Hull say insurance companies have gotten better in recent years at reimbursing costs.
Families, even those with no health insurance, stay for free.
When they first came to the hospice, the brothers wheeled Charles to a playroom, the cafeteria and the gardens outside. Now that he has lost his ability to speak and eat, the days are passed mostly in his room. But their playfulness with their brother, that has not changed.
When Charles was diagnosed with brain cancer, Trayshaun and Nate shaved their heads as a show of support. “Y’all are crazy,” Charles told them.
“He knows he’s not going to pass alone,” Trayshaun says now.
Their camaraderie wasn’t always like this. When Charles first came to live with them, friction formed before the bonds of brotherhood.
Trayshaun wasn’t too keen on the new teen; he back-talked their mother. “Don’t talk to Mom like that!” Trayshaun would say. He’d jump on Charles’ back and hold on tight. “She’s your mom too, so you gotta respect her.”
Charles’ girlfriends were an issue, too. He’d bring them over to hang out at the house, but “every time, they’d end up liking me,” Trayshaun says with a grin.
Over time, friendship replaced jealousy. The two shared a room and stayed up late chatting about shared interests: girls and dancing. Mom and Dad watched them grow so close, they were like twins separated at birth.
After Charles’ diagnosis, when darkness consumed the boys’ room late at night, Charles confided that he was scared of dying. Trayshaun comforted him, in his keep-it-light way.
“I’ll catch you on the flip side,” he told Charles.
“I’ll see you there,” Charles responded. “If I die, I don’t want you crying and feeling sad. I want you to go for higher things and achieve in life.”
In the hospice, Trayshaun, 17, holds his brother’s left hand. They square off in thumb war. “We created a bond together. I like taking care of him. It’s really not a burden.”
They’ve been brothers for nearly three years, enough time to let their relationship grow. “I always wanted to have a little brother. Now, I got one.”
The oldest of the siblings at 19, Nate sits in the corner of the room. He projects calm in front of his brothers and sisters. He believes that’s his role. “I need to be as strong as possible for them.”
When family and friends visit, Nate stays in the background, soaking up the moment. But when others are not around, Nate stands next to his brother’s bed. Charles touches his face and pulls him close. “He knows I’m right there — that I’ll always be right there.”
He has physically carried Charles from room to room. “If I was in his shoes and in his situation, he would do the same for me,” Nate says. “I see it as just love.”
Sometimes, Nate plays a video on the television in Charles’ room. It shows Charles beaming in the backseat of the car while their dad speeds down the highway. Charles sings “Bleeding Love” by Leona Lewis.
I don’t care what they say
I’m in love with you
They try to pull me away …
The video was shot on a trip to Los Angeles. Charles had been invited on a Make-A-Wish-Foundation vacation to see Beyonce — his crush — in concert in Arizona. But Charles traded the chance to meet the singer for a family vacation to Los Angeles. They shopped in Hollywood, dined on soul food at Aunt Kizzy’s, played at Universal Studios and ran around Venice Beach.
There were no hospital stays, no chemotherapy. Everyone was just able to feel free. “It was the best trip,” Nate says simply.
Even in this hospice room, memories from that trip bring smiles. Mom, Dad, Aunt Janice Mays, Nate and Trayshaun share laughs over how silly Charles was. Trayshaun leans in so close to Charles, it looks as if the boys will kiss.
The two hold hands. But as Charles gasps for breath, he lets go of his brother’s hand and reaches for his mother’s.
“Ohhh, you wanna go to the old lady’s side,” Trayshaun teases.
He picks up a tube near the top of the bed and suctions his brother’s mouth. “Am I annoying you?”
An audible grunt comes from Charles. “Uh-huh,” he says.
“Did you hear him?” Forest says.
“We thought we were teaching Charles to be a child, how to just be a kid.” — Tremica Thompson, Charles' mom
It’s 10:10 p.m., a long day nears its end.
“We’re staying up all night,” Trayshaun says, “because we’re some party animals.”
As he lifts Charles to make him more comfortable, he discovers that Charles has urinated in bed, one of those things that happen when your body is failing. “Come on, Nate, we need to change him.”
As everyone begins to leave, Charles’ breathing grows louder, more labored. His moans echo through the room and down the hall.
Tremica pulls her son close.
“Don’t you leave me, baby,” she says. “Not now, baby. Not now.”
Charles slipped out of the house and ran.
It was June 20, 2008. He’d been living with the family just four months. Forest and Tremica were always saying he was part of their family, that he’d made them whole. Charles had never known such compassion.
His feet hit the pavement running. He would put these folks to a test: Will they miss me if I’m gone?
Tremica put out an all-points bulletin. She called police. She went to the local bus and train stations. She passed out his photo. Minutes turned into hours.
Around midnight, Charles slinked home. Nate and Trayshaun covered for him. They sneaked him upstairs and into bed.
The next morning, it was family meeting time.
“Whatever lies in store, we'll face it as a family.” — Forest Thompson, Charles' dad
Mom and Dad spoke of being united. “We don’t run away from our problems,” Tremica said.
Charles glanced around the table at his new family. “I’m sorry,” he said. “I’ll never do it again.”
An even greater test would come five months later, in early November 2008, when Charles awoke with a crooked eye. A series of medical tests showed that Charles had a brain tumor.
“Mom,” he asked, “am I going to die?”
Caring for their son would cost Forest his manufacturing job and Tremica her transportation job. Charles spent much of that time in hospitals. Seizures wracked his body. Radiation made him itch all over. Chemotherapy made him bald. Once, a kid at school pulled off Charles’ knit cap in front of classmates. Trayshaun came to his brother’s rescue, his fists clenched.
Charles celebrated his 14th birthday with a limousine ride and life-size poster of Beyonce. At one family gathering, he told everyone he was thankful to be alive.
The day after Thanksgiving 2010, the neurologist met with Forest, Tremica and Charles. The cancer had spread.
“There’s nothing more we can do,” the doctor said.
Tremica’s shoulders shook. Dad cried, too. So did Charles. But just as quickly as he’d absorbed the news, the teen forgot what the doctor said.
On the car ride home, Tremica wept more. It was one of those open-the-floodgates, rattle-your-soul cries.
“Dad, did you say something to upset Mom?”
“Mom, why are you crying?”
“Oh, Charles,” she said. “Somebody said something to me that hurt.”
The family set a goal of celebrating Christmas at home. “Whatever lies in store,” Forest told his kids, “we’ll face it together as a family.”
The days crept by. On Christmas Eve, the home buzzed with excitement. Charles and his siblings waited for the clock to strike midnight. As soon as it did, they tore into their gifts.