Posted Mar 29 2012 1:28PM
MEMPHIS, Tenn. -- This is about hope. And crying. Laughing. Dinosaurs and elephants. Scalpels and drills. Pink bows tied to the shaved heads of little girls. Surgical masks. IV tubes. The biggest Halloween bash anywhere. And fear. Yes, that too. Long walks, prayers, soul searching. This is about a tough question asked daily inside the building: "Mommy, am I getting better?"
This is about boxes of tissue. Lots of them. For the parents.
And dolls. By the dozens. For the kids.
This is about the most optimistic place around, because there's no other choice at St. Jude Children's Research Hospital. Some of the roughly 7,800 patients seen yearly are terminal cases, others less so. All arrive with different types and stages of life-threatening cancers and other catastrophic blood disorders. They can't get the kind of ground-breaking treatment, care or attention at their local hospital. Their next stop, their best stop, is here.
As of today, there's no cure for cancer, but families and doctors around here will tell you to check back tomorrow. That's how they think, how they feel, how they're conditioned to believe at a hospital that keeps churning out little miracles, baby step by step.
The hospital was created by Danny Thomas, a comedian with a serious bone in his body. That was 50 years ago; then, anyone with pediatric cancer was assigned a priest. The success rate for the most common form of childhood cancer was 4 percent.
Now the survival rate is 94 percent, a big leap for sure. But it's not higher than parents who soar after getting good news about their son or daughter.
The NBA is hosting Hoops for St. Jude Week to help generate awareness and funds for a medical center that doesn't charge a dime -- a miracle unto itself.
"I always pray that we'll find a cure in my lifetime," said Nuggets coach George Karl, twice a cancer survivor himself. "And my dream is that it'll happen at St. Jude."
This is about cruelty, our most vulnerable kids, about a saintly entertainer's vision and what happens inside a place that cares.
Arianna had a fever. Or maybe it was a cold. Her mom wasn't so sure. That's how it starts, this journey to St. Jude. A child gets a queasy stomach, a headache or runs a high temperature. The parent, never thinking the worst (Not my kid!) is off to the drugstore to find some Vicks or a children's aspirin and then waits for the discomfort to go away. Which it does. For a quick minute. Then it comes back, in a rage, worst than before.
Leticia Ramirez was in Japan, where her husband was stationed, when Arianna had a seizure that lasted 10 minutes. They took their daughter to a nearby hospital, but language was a real barrier. So they flew back to the States -- and you can imagine that flight -- to be told by doctors in San Antonio that their 3-year-old had 18 months, tops.
And that's another part of every St. Jude journey. The nearby hospital throws up its hands and tells the family to go to church. Or, better, to Memphis.
"We came here and went through six weeks of high dose radiation to the brain and spine," says Ms. Ramirez. "And then five months of high dose chemo. In March of 2010 we were told we were disease-free."
She says "we" because the family suffers, not just the child. Nobody at St. Jude says "him" or "her." It's always "us" or "we."
"Every three months we came back to the hospital and did our checkups and everything went great."
Until Arianna relapsed.
"Currently my daughter is terminal," the mother says. "There is no cure for our cancer. We have hope but we also live in reality. We do have children in this hospital who pass away from the disease and my daughter will be one of them."
Almost by reflex, Leticia Ramirez's right index finger rises to wipe a tear. She has, unfortunately, mastered this technique. Moisture never falls below her cheek, now swollen.
"When she first went through treatment she lost her hair. It was hard on her. One night after she went to bed I shaved my head. And the next morning she walked down the stairs and I met her at the bottom. She looked at me like she'd seen a ghost. I said, 'What's the matter?'"
"You don't have any hair."
"Well, now I'm beautiful like you."
"You know, you're the best mom ever."
Left index finger this time, left cheek. The tear doesn't stand a chance.
"I draw my strength from my daughter. She doesn't ever complain. She had a bone procedure where they drilled three holes in her hips and pulled out stem cells and told her she wouldn't walk for another three-four days. That day she was determined. She was walking around. It took her a while but she did it."
The typical family arrives at St. Jude in tatters. You can imagine. There's sadness, remorse and also anger. The "Why us?" game is played and replayed. Finally, there's a sense of helplessness among the parents, because it's out of their hands.
"A mom's job is to make everything better," said Ramirez. "And you can't. There's no huge band-aid to put on it and a kiss to make it go away. For us, this has been our life on a string, having someone pull it down and telling you how great it is and then pulling it back away and leaving you to deal with reality."
And the reality is?
"We celebrate the little milestones. Being able to go to the zoo. Going Sunday to Sunday. Most people wait for a kid's graduation or 16th birthday. We celebrate today. And tomorrow. In that sense, we are blessed."
The delicate surgeries performed at St. Jude are many in variety. Brain tumors, bone cancers, transplants, the most serious and complex kind, all done daily. It's not unusual for a single patient to endure several surgeries. For a good part of their lives, if not their entire lives, St. Jude is all they know.
Audrey Davis took a punch to the gut before Courtney, her unborn daughter, could deliver a kick to the stomach.
"She was diagnosed with the highest form of sickle cell while I was pregnant," Davis said. "I had a nephew die of the same disease before he turned 3. So for us, my pregnancy was a death sentence. I pretty much lost hope before she was even born."
St. Jude treats all blood disorders, not just cancer, and it was the first to produce a cure for sickle cell with a bone marrow transplant. So it was a pleasant surprise for Davis to know qualified help for Courtney was nearby, right in her hometown.
"She's been on low dosage chemo since she was 3," Davis says. "She was sick all the time. She's now 11. After about a year, instead of wondering if our child was going to live, we are now wondering only about her quality of life. She's going to live. Here we are, eight years later, and we're just amazed. She's as close to normal than we could've ever imagined."
She must still receive outpatient therapy because the blood doesn't always flow through her joints and it causes pain. Picture a hammer, strike down on the bone.
Courtney was frightened only once, just recently, when she was asked to sing the anthem at last Tuesday's Grizzlies game. She sang in the hospital starting at age 5 and the doctors thought it would be therapeutic for her to sing regularly. At the FedEx Forum, she wore a rose dress, which matched her faint freckles, nervously took the mic and made it through. Got a standing O, too.
Didn't make her mother want to sing. Her mother wanted to shout instead.
The most important place for children with deadly diseases looks ... friendly. Fun, even. The campus, just off the banks of the Mississippi, could've been created by a few hundred million Lego pieces, that's how kid-centric it appears, inside and out.
"There is a spirit at St. Jude that you won't find anywhere else," said Karl, who toured the hospital last year. "You're just blown away."
The grounds, they don't have a single weed or a blade out of place. Inside, you can't find a speck of dust. Imagine, a place for children, and over-run with children, somehow remaining spotless. If a kid eats a cookie you almost expect someone to snatch a crumb before it hits the floor.
The walls in the lobbies and corridors are busy. Not a single stretch of wall is completely white. There are murals, and artwork (600 pieces, many by patients), and colorful drawings of dinosaurs and animals, and even a seasonal theme that flows along, changing from flowers to a sandy beach to brown leaves to snow. The walls are alive so the kids will continue to feel alive.
There are 15 buildings, including three residence halls for entire families to stay, either short-term or long-term (three years max).
"It is a happy place," said Audrey Davis. "Now that my daughter Courtney doesn't get sick often, it's been 18 months since she last spent the night there, and so when we go back for checkups once a month she's excited. St. Jude is fun because they spoil all the kids. She misses that. Which is kind of crazy. I've never seen a place with so much illness that manages to make kids so happy."
Instead of wheelchairs, patients are often tugged around in red wagons, sick children made to feel like regular children.
However, you must look beyond the mosaic walls to find the real reason families find comfort. That comes from the staff.
The first day families are admitted, they're assigned a doctor, nurse, child life specialist and social worker. And this team stays together with the family for the duration, however long that may be, until whatever conclusion is reached.
"We are the people's hospital, because we want to treat the family as well as the child," said Rick Shadyac. He's the CEO of the fundraising arm of St. Jude, following his late father, Richard, a confidant of Danny Thomas.
Doctors and scientists work under the same roof, so everything falls together: treatment, research, therapy, psychological help, the works. One-stop care. The medical staff includes Dr. Peter Doherty, a Nobel Prize winner, and many leaders in the field.
This was Thomas' vision. He was a struggling nightclub comedian who dropped to his knees and vowed if he ever hit it big, he'd open a shrine dedicated to St. Jude Thaddeus, the patron saint of hopeless causes. Soon after, he went full-blown Hollywood, performed to sold-out shows and starred in Make Room For Daddy, which lasted 13 years in prime time. He opened St. Jude in 1962, citing that "no child should die in the dawn of life." Memphis was chosen because the city was the epicenter of poverty in America and lacked the benefits of bigger cities.
Thomas carried a newspaper clipping in his wallet about a young African-American boy from Mississippi who was hit by a car while riding his bike. The boy later died when no hospital would admit him because of his skin color. Thomas demanded that St. Jude would take anyone, from anywhere (all 50 states have been represented, and many countries) and the staff would be integrated when the hospital opened.
"He was a visionary, a man before his time," said Shadyac.
Every kid upon arrival is given a doll. Nothing happens to the kid unless it "happens" to the doll first, whether it's chemo or removing a limb. It's a bonding method. You'd have to be a kid to understand.
And the attachment to doctors is just as firm.
"He is family," said Leticia Ramirez. "Our doctor truly and honestly feels for us. It hurt him when my daughter relapsed. And I could tell. These doctors are saving children's lives, and when they don't, it hurts them just as bad as it hurts me. If the average person sees a sick kid, they're sad, but they can go on with the rest of their lives. These doctors, it's what they live and breathe every day.
"I would love to meet my doctor's family because he has put his own family on the backburner to make sure I have moments with mine. That's an amazing sacrifice, not only for him but his family. He has sacrificed recitals, ballgames, many special moments with his children, I'm sure."
There are full-time teachers on staff so children can continue their schoolwork with the idea of keeping their missed education to a minimum. And if the sick child has a healthy brother or sister, they're welcome to stay, too. Their school back home is notified and the education continues at St. Jude.
The experience for the patients, on certain levels, is shared by the person charged with saving them.
"There is a grim side to this and one has to toughen up to it," said Dr. Stephen Morris, the director of rehabilitation services. "At the same time, as a doctor, you know there are the successes that blunt some of the adversity. There's also the knowledge that you are doing good. There are people who've been here 30 and 40 years and that speaks to their commitment, their resilience, their tolerance.
"People come here and find out very quickly if they can do this. They're out the door if they can't. You don't last very long if this type of work is not part of your character."
It's the biggest bargain anywhere: We'll try to save your child's life, for as long as it takes. For free. As in, you are comped. Plane tickets to and from Memphis, housing, food, counseling and complete medical care round-the-clock? All pro bono.
The daily cost of running St. Jude is $1.7 million.
That's daily. As in, per day.
"For a short period of time at first," said Audrey Davis, "we were going to another children's hospital. With an 80-20 insurance, I learned 20 percent of a whole lot is a whole lot. Bills added up. By the time every radiologist, every X-ray technician, every-this, every-that sent me a bill, I was paying $4,000 a visit for my portion. So many things weren't covered by insurance. And now, from St. Jude, we don't see a bill. I'm curious what it could be. She's been treated for eight years."
Families are not only whipped emotionally once they arrive at St. Jude, chances are their finances are just as shredded. Most parents of kids with the deadliest cancers leave their jobs to stay in Memphis with their children, fall behind on their mortgages and see their budgets blown.
Jerome Gates' 3-year-old son Jyrik recently developed a rare liver cancer. "Only three cases in 100 years," said the father. "We were the third."
The family left their home, 150 miles from Memphis, last October and haven't returned since. Gates worked in a warehouse and walked off the job the day his son was diagnosed.
"We left everything behind," he said. "We lost our house, everything. All we had when we came down here was the clothes on our backs. When he came here he was Stage Four, on his deathbed. My son's mother, my fiancé, slept in the bed with him at St. Jude for 30 days straight, never leaving his side, except to use the bathroom. She took it harder than I did. I had to be the man. I would take trips outside the hospital to cry. I couldn't cry in front of him. He looked up to his daddy, to be a man, be strong. But many nights, after he fell asleep, I broke down right in the room. Nearly drowned. Tried to keep it together when he woke up."
The best day of the last six months?
"When Z-Bo (Zach Randolph, the Grizzlies' forward) came by unannounced to pick him up," Gates said. "Just swept him up and took him to a Grizzlies game. Melted my heart."
A short-term residence on campus is named after the only pro team in town. The Memphis Grizzlies House is where Marc Gasol holds tea parties with patients. The sight of a 7-footer squeezing himself in a chair made for an infant is a miracle in itself. Rudy Gay annually gives $22,222.22, a tribute to his uniform number. Kevin Love, among others, is also big on St. Jude, saying, "When my career's done and if all I'm remembered for is being a basketball player, then I haven't done my job."
Most donations don't flow from millionaire ballplayers or actors or philanthropists, though. The typical gift is $30, and they cover 75 percent of the costs, compared to 12 percent by insurance.
"This hospital," said Shadyac, "comes together by virtue of millions of people."
The fundraising is relentless, because it has to be. Thousands are held every year, small and large. Corporate sponsors help, too. Chili's, the restaurant chain, has a $50 million building on campus. There are situations where doctors, these respected medical professionals, roll up the sleeves on their white coats and clean the fish tanks, just to save a few bucks.
Blood donor centers are abundant because, Shadyac said, "if you can't give green, give red."
On Halloween, the majority of the costumes are homemade by the employees, who look forward to that day as much as the patients.
"Our health care system is in crisis," said Audrey Davis, "so when you tell people your child is going to a hospital where she's getting the best care in the world, and you don't pay any money, I don't think they understand what that means."
Hospital employees tell the story of a desperate parent, ripped apart by his sick daughter, arriving at the hospital, walking to the registration desk, pulling out his wallet and emptying it. Money, credit cards, all falling out.
Please, he said, do what you can. I'll pay. Whatever it costs.
Right then, he discovered the first step in the St. Jude journey.
This is not about your wallet. This is about her.
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