By LAURA MEADE KIRK Journal Staff Writer
Three-year-old Connor Hennessey was sicker than his parents had ever seen him: he had been complaining of pain in his legs, then spiked a temperature of 105. His pediatrician thought it was the flu. But two days later, Connor still had the fever and couldn’t walk because his legs hurt too much.
His parents brought him to the emergency room at Hasbro Children’s Hospital, figuring Connor had some sort of nasty virus. But the blood tests showed something much worse: Connor had leukemia.
Tracy and Brian Hennessey burst into tears when they heard the news. “We were in complete shock and hysterical,” Tracy recalled. “Did this mean he was going to die?”
As they sat on the edge of Connor’s hospital bed, morphine pumping through their child’s tiny body, they felt helpless. Then, they said, this “grandfatherly man” walked into their room.
Dr. Edwin Forman, the head of pediatric hematology and oncology, patiently explained “what it meant and what he could do,” Tracy said. “He was calm and comforting — grandfatherly — very reassuring. You’re talking about your three-year-old, who could possibly die, and this man comes in and gives you the strength and the confidence in him to know that he’s going to do everything he has in his power to make it better.”
They believed him.
Connor turns 8 later this month, with no signs of the cancer that could have killed him.
The Hennesseys credit Forman.
“He’s just an amazing individual who really cares and really knows his job and mission — to help save children’s lives,” Tracy said.
And he’s been doing it in Rhode Island for nearly four decades.
“ED FORMAN, 30 YEARS AGO, changed the face of pediatric ‘hem- onc’ (hematology-oncology) in Rhode Island,” said Dr. Wilson Utter, a Rhode Island’s pediatrician for more than 40 years, until he retired two years ago. “Prior to Dr. Forman, for example, we automatically sent a child with leukemia to Boston. Then, suddenly, wonderfully, we didn’t need to. The children could stay in Providence, it was much easier for the parents, and they got just as good care.”
It all started when Forman teamed with Dr. Louis Leone back in 1968. But Leone specialized in treating adults. Until then, no one had focused on kids.
That’s not surprising, Forman noted, because a diagnosis of cancer was usually a death sentence for a child. The cure rate then was an abysmal 25 percent.
But Forman believed it didn’t have to be that way. He was among the first to conduct “clinical trials” of new cancer-fighting drugs on kids. He pushed for the creation of Hasbro Children’s Hospital to replace the children’s wing at Rhode Island Hospital, which state health officials had declared “an embarrassment.” And he recognized that there’s more to treating cancer than treating the disease.
He helped launch supportive services for young patients and their families, from programs designed to help schools deal with students who have cancer to the Tomorrow Fund, which provides financial and emotional support to families.
That’s why so many people know and love him – they say it’s obvious he cares.
“In a world where specialists are often out of touch, he is always available, always answers quickly or returns calls, gives advice or sees patients,” Utter said. “All my patients who have seen him over the years have found him to be warm and caring and informative, (which is) so important when dealing with a child who is often — in his business — seriously ill.”
HIS EMPATHY IS BORN of his own experiences, Forman says. His father died in a car accident when he was 12. Soon after, a neighborhood child died of cancer “in a matter of weeks” after being diagnosed. Later, a college classmate who went to the hospital for bleeding gums was diagnosed with leukemia and died. Then, his mother succumbed to breast cancer.
“That made me want to go for a cure” for cancer, he said.
Oncology has to be one of the saddest specialties in all of pediatrics, he admits. It’s never easy telling parents that their child has cancer, and it’s even harder to be there when the child dies.
But he’s also found it challenging — trying to come up with a cure where once there was none. He has watched children’s survival rate soar. And he has had what he describes as “miracle” cases, such as that of Corey Fox of Cumberland.
Corey had a tumor like that of biking champion Lance Armstrong; it can be cured 60 to 70 percent of the time. But Corey was in the 30 to 40 percent failure category. “He just kept relapsing, no matter what (drugs) I put him on,” Forman recalled.
About that time, Forman read an article called “Dying Words.” It was written by a doctor about telling a woman who has breast cancer there is no cure.
Forman decided to be up-front with Corey’s family. He told them he’d try to “cage the tiger” — to prevent the cancer from spreading, but there was no longer hope for a cure. That wasn’t good enough for Corey’s family. They said: “We have faith, Dr. Forman. Between you and God, we’re going to cure him.”
Inspired, Forman decided to try a different tack: a drug that was used to treat this type of cancer years ago. It worked.
“It’s been four years now, and there’s no sign of the disease anymore,” Forman said.
He chucked that article about “Dying Words.”
FORMAN WAS BORN on Christmas Day in 1934, a Jewish baby in a Catholic hospital in Brooklyn, New York. He was the youngest of three children and grew up a diehard Brooklyn Dodgers fan. He remembers listening to the games blaring through every open window during his three-block walk home from school.
The Dodgers were a scrappy team, he recalls, unlike the dreaded New York Yankees, who looked as though they belonged on Wall Street with their pin stripes and huge salaries. The Yankees never would have hired Jackie Robinson, the first black man to play major league baseball, Forman said. But the Dodgers did.
Forman was 12, and Robinson was his hero.
It was around that time that his father was killed in a car crash while being driven home by his uncle from a Dodgers game.
Yet it would be his father who led him to Rhode Island. His father had graduated from Brown University, and his family received the Brown alumni magazine long after his death. When Forman graduated from high school, he decided to go to Brown, too.
Brown was followed by the University of Pennsylvania medical school, and Johns Hopkins in Baltimore for a residency in pediatrics. He experienced the highs of medicine — he and another intern solved a medical mystery that ended up being published in the prestigious American Journal of Medicine — and the lows — his first time telling a family that their little boy’s cancer had spread “and there’s no hope for your son.”
Forman eventually joined the Air Force, in large part to avoid the post-Korean War draft, and he found himself in England, where he was the only pediatrician on his base, responsible for 2,500 kids.
But he was still searching for a pediatric specialty. He wrote to his former professor at Johns Hopkins, asking for advice. Should he pursue a career in infectious disease or hematology?
The professor wrote that there was no future in infectious disease because of the advances in antibiotics over the years.
Forman took up hematology, focusing on the nearly hopeless children with leukemia. “Every kid died in a couple of months” after diagnosis, he said.
Forman traveled to the University of Illinois in 1966 for a fellowship, about the time that treatments were being developed to combat some forms of leukemia. The cure rate for leukemia by then had risen to 25 percent.
In that climate of hope, Forman would find his niche.
BY THEN, HE’D MET and married his wife, Sylvia, in what he calls a “romantic story.” While at Brown, he’d befriended a fellow student from Providence, Herb Rakatansky, who often invited classmates to his home. Rakatansky had two younger sisters. One had a tremendous crush on Forman, though she didn’t reveal it at the time.
After Brown, Forman and Rakatansky went separate ways, but met up later while each was in medical school. Rakatansky said to his sister: “Guess who I saw? Ed Forman.” She immediately demanded details: Where was he? What was he up to? Was he married or seeing anyone? Then, she wrote to Forman, saying: “Hi, remember me?” Forman wrote back, and four or five months later, they were engaged.
She persuaded him to move to Rhode Island to be near her family, Forman said. Here he became a Red Sox fan, since, like the former Brooklyn Dodgers , they were arch-enemies of the Yankees.
Forman started with a part-time practice in pediatrics in Providence, while working part-time at Rhode Island Hospital in the oncology department, which dealt primarily with adults.
By 1968, though, there had been so many breakthroughs in the treatment of kids with cancer that Forman gave up his pediatric practice to concentrate on bringing care for children with cancer and diseases of the blood to Providence.
Even then, it was clear to Forman that it would take more than medicine to cure these kids. During his fellowship in Chicago, he participated in a study on the effects of stress on families dealing with traumatic illness. He would interview the families to find out what was happening with the marital and sibling relationships. It was eye-opening.
“When parents get a life-threatening diagnosis, all the focus is on that child,” he said. The parents don’t get any attention. Nor do frightened siblings, who often wonder if they will get the disease too.
He proposed hiring a family consultant for Rhode Island Hospital, someone who’d already gone through treatment — or the death — of a child, to help families when their children were diagnosed with cancer.
He recalls how the first family consultant reminded him of his priorities. Forman was on rounds with a medical student and was talking about a child’s case. The consultant pointed out that the family had waited 45 minutes to talk to Forman while he was tied up with the resident. He realized he was sending the wrong message: “that patients can wait.” It reminded him and the resident that patients and families should come first.
Then he turned his attention to the schools, because most kids are eager to get out of the hospital. But returning to class can be traumatic.
“When a kid with cancer goes back to school, they look puffy (because of steroid treatments) and they have no hair. The word goes out: that kid has cancer and is going to die.” So other kids tend to stay away — or make fun of him. So Forman established a program where he would talk with teachers, school nurses and the child’s classmates to help ease the transition back into school.
He recalls the case of one young boy who had a brain tumor. “He really wanted to go back to school. He was puffy from steroids and was walking with difficulty. Other families didn’t want him in the school. He was frightening to look at, and it was scary knowing he was going to die.”
But he finally was allowed back in school, and Forman talked to the students. The boy’s classmates rallied. Two boys volunteered to help him in the bathroom. He even had a girlfriend. Lots of kids came to his aid before he eventually died, and each of those kids felt like a hero to that little boy, Forman said.
He also lobbied for a social worker and a child life specialist, people to make a child feel at ease in the hospital. One of the specialists corrected him when he suggested that she was a “play therapist.” She retorted: “Play isn’t therapy. Play is like oxygen. Children can’t survive without it.”
It’s now an integral part of treatment, he said.
MEANWHILE, ALTHOUGH CHILDREN’S cancer treatment in Rhode was making great gains, Forman longed for a program like the highly successful Jimmy Fund in Boston that provided money for research and family support for patients at the Dana-Farber Cancer Institute.
He didn’t have the time to do it on his own. Then along came Robert Trudeau, a Providence College professor whose daughter, Julie, had succumbed to cancer in 1984 at age 17.
Twenty years ago, they co-founded the Tomorrow Fund, a nonprofit organization that offers financial and emotional support to families who have children with cancer. It provides the obvious — support groups and counseling — but it also addresses the often hidden costs of cancer treatment. The fund, unique in the nation, is tapped for everything from paying parking fees at the hospital to helping out with mortgage payments when parents have to take time off from work. (See story on Page 8.)
Four years later, he co-founded the local Ronald McDonald House, which provides low-cost housing near the hospital for families while their children are undergoing treatment.
And he lobbied for a children’s hospital.
Forman pointed out that children were shoehorned into the Potters Unit at Rhode Island Hospital, where six patients often shared a single room and each shower served 25 kids. There were strict visiting hours, and parents were discouraged from staying with their kids. There was no place to talk to families except at the child’s bedside or in the hallway. What an awful place to convey bad news, he said.
He invited the state’s Joint Commission for the Accreditation of Health Care Organizations to check out the Potters Unit, and they reported back: “Your children’s area is an embarrassment.”
That blunt statement was just what Forman’s campaign for a new hospital needed: “We were made.”
Hasbro Children’s Hospital opened in 1994 with a special treatment center for kids with cancer.
The Tomorrow Fund helped create the Tomorrow Fund Clinic, with its brightly colored murals in the treatment rooms, video games, arts and crafts — and its own child life specialist and family consultants.
Forman also reached out to kids and their families in other ways, such as creating Camp Dottie, a summer camp for sick kids and their siblings, and initiating a Remembrance Day: a day in December when family members could gather with staff members to remember the kids who didn’t make it.
It’s important to the families — and to the staff, Forman said.
“One of the things that was so sad is that we work (with a family) for a couple of years and a kid dies and we say goodbye. It’s a kind of brutal ending for the staff. You see the family in grief, and then you never see them again.”
Now, families submit photos of their children, and they’re made into a slide show on a big screen, with pictures fading in and out with the date of birth and date of death. There’s music in the background, and a candle-light vigil, and a special speaker, and then an open microphone for families to talk about their loved ones.
He wipes a tear from his eyes as he describes it.
“You might make (these parents) cry if you bring up their child,” Forman said. “But they don’t want their child forgotten. So the tears are good.”
Beyond his own patients, Forman was busy sharing his ideas and expertise with Rhode Island’s medical community.
He spent more than 25 years overseeing a pediatric residency program at the children’s hospital. He tested drugs and treatments and he wrote books, including The Parents’ Handbook on Childhood Leukemia. He was named director of pediatric hematology and oncology, where he built a team of specialists.
Where once there was only him, now a child with cancer sees a team of more than a dozen people, including six faculty doctors, two nurse practitioners and several nurses. Many are specialists in such fields as leukemia, brain tumors or Hodgkin’s disease.
When he arrived in Rhode Island, only about a quarter of kids with cancer who lived in southeastern New England came to Providence for treatment. Today, nearly 90 percent do.
They know that the team at Hasbro Children’s Hospital is among more than 100 children’s cancer centers nationwide, all sharing information, research and techniques. The only procedures not performed in Providence are transplants, which are done at a handful of hospitals nationwide.
“If we can’t do it,” he said, “it’s our job to find the right place.”
On Aug. 1, Forman stepped aside as Hasbro’s director of hematology/oncology, turning over his post to Dr. Cindy Schwartz, an expert on “late effects” of treatment. One out of four kids who undergoes treatment for cancer and other serious blood disorders develops other problems, ranging from learning disabilities to lost limbs, he explained. Schwartz’s expertise, Forman said, adds another dimension to the hospital’s care.
Forman is quick to note that he’s not retiring, he simply wants to spend more time with patients.
Schwartz concurred: “He’s going to be a doctor forever. He loves it too much.”
WHAT FORMAN LIKES absolutely best, he says, is taking care of kids. Spend a day with him at the hospital, and that’s obvious.
Two months after stepping down as administrator, his new hospital office is still filled with unpacked boxes of books, files and papers. He’s too busy with patients to worry about the mess on his desk. Whether he’s at work or at home, he’s always on call.
“One of my patients is dying right now,” he said one recent day. “I’m not on call, but if anything happens, I’ll have to be with that family.”
It’s as important for him, he says, as it is for them.
On a walk through the hospital corridors, everyone knows Dr. Forman. He’s the guy straight out of central casting, with a thick shock of white hair and matching moustache, and a shirt pocket crammed with pens underneath his white lab coat. He ‘s known for his calm demeanor and the easy smile of television’s Marcus Welby, M.D.
His longtime secretary, Donna Burke, says she’s never seen him ruffled. “He’s in a good mood every single day. And if he’s not, no one would know.”
His lofty status at the Tomorrow Fund Clinic is clear from his portrayal on the “Wall of Hope” mural leading into the clinic. The painting is of a jungle scene, with donors’ names written on each leaf and blade of grass. Forman is the wise owl at the top of the “Tree of Life,” the centerpiece of the mural.
That’s how he’s viewed inside the clinic, as well.
“He’s a legend,” said secretary Joanna Winn. “He’s our own little legend.”
HOW MANY LEGENDS, though, can do magic tricks? That’s Forman’s secret weapon to put kids at ease.
One recent day, 4-year-old Victoria “Tori” Beck was curled up against her mother, sobbing. Her mother explained she was suffering from terrible back pains. Forman approached her in the waiting room, asking if she needed Tylenol for the pain. But Tori was tired of medicine. And she didn’t want a snack from the treat basket, or to make a treasure box, as the other kids were doing. She just sobbed.
So Forman pretended to pull a coin from her ear. Sure enough, Tori cracked a smile. Then, he showed her his magic light: a pen light that appears to go out each time he blows at it. Tori smiled again.
And he puts parents at ease as well.
He was recently on rounds at Hasbro Children’s Hospital, checking on an 11-year-old girl with an aggressive tumor on her leg. She was due to be discharged after her first round of chemotherapy. She was curled up on the bed, her leg in a bright green cast, watching Arthur on television while her mother told Forman she didn’t understand what was happening with her daughter’s treatment.
She wasn’t one of Forman’s patients, but he patiently explained the entire process, from diagnosis through treatment, and how the team of doctors worked together and with other doctors nationwide to come up with the best course of treatment for each child. Sometimes, tests show that a cancer is more aggressive than initially thought – – as happened in this case — so they simply need to treat it more aggressively.
The mother said, “So I’m still going to be positive.”
With good reason, Forman told her. The prognosis was still very good.
Hope is critical, he later explained. “Parents can’t live without it.” But it has to be tempered with reality.
EVEN WHEN CHILDREN ARE NOT his own patients, Forman sticks to his philosophy: take every patient personally.
He says that at diagnosis, “I can get a little wet in the eyes,” but that’s okay. Parents in crisis won’t remember a doctor’s words, he says, but they will remember, “Does he care? Can I trust him?”
He’s involved with families for months, even years, and so “at a deathbed, I see no reason why a physician shouldn’t cry.”
He pulls a quotation from his wallet. It’s from the book Praying for Gail Hodges: “People don’t care how much you know until they know how much you care.”
Patrick Lynch knows. Diagnosed with leukemia at age 15, he’s been Forman’s patient ever since.
“He’s always been like the grandfather I never had,” said Lynch, 26, of Pawtucket, who recently “graduated” to the adult treatment center. “He’s so much more than a physician. He is a friend, and he is someone who cares — not just about the physical well-being of the patient, but about this kid — or this teenager — the patient, and his family.”
One day when Lynch had been at the Tomorrow Fund clinic for what should have been a routine blood test, he had to wait much longer than usual for the results.
Finally, Forman walked in. “He was much more quiet than normal. His eyes were watery and he said, ‘Patrick, I don’t know any other way to tell you this, but your cancer may have relapsed.’ Normally, when you hear those words, you think, ‘Oh God, not me.’ But when I heard them from Dr. Forman that day, I already knew everything was going to be okay.”
And, after a bone marrow transplant in Seattle in December 1997, everything has been okay — just as he’d expected.
FORMAN INSISTS THAT despite his 10-hour days at the hospital and clinic, he tries to make time for fun. He plays tennis. He used to play softball on the over-40 then over-50 leagues, pitching and playing outfield. “I had a heck of an arm — a rifle arm. My arm’s like Johnny Damon’s,” he boasts playfully. But a rotator cuff injury put him out of commission.
Instead, he enjoys tending his vegetable garden at his home on Providence’s East Side. “I love compost,” he said. “I love all that crap turning into black gold.”
He says he enjoys everything about living in the city, from easy access to shopping to the Rhode Island Philharmonic Orchestra. His wife is now a psychotherapist, and his three kids are grown.
His oldest son, Joel, is a pediatrician at Mount Sinai Hospital in New York, directing the residency program there while specializing in environmental medicine. His daughter, Lisa, is a pediatrician at City Hospital in Queens, a multi-ethnic area of New York City where “she sees everything — she’s diagnosed diseases I’ve never even heard of.”
Another son, Daniel, lives in New Orleans and is on the lieutenant governor’s staff, working to interest kids in the environment.
None had the heart to follow in Forman’s footsteps. His kids think his profession “is too sad,” he said.
His brother-in-law, Rakatansky, agreed: “It takes a special kind of person to do pediatric oncology, and Ed is that special kind of person.”
But it’s his patients who appreciate their doctor most. Just last week, Forman wept when he received a letter from the parents of a boy who’d died of leukemia.
“There have been many doctors that we’ve come across in the past seven years since Stefan was first diagnosed with leukemia, and we feel that you’re definitely an exceptional work of God,” the parents wrote.
“We cannot thank you enough for loving Stefan with us, through thick and thin. . . . The power of your love for your field has touched so many lives, including ours. We will forever have a special place for you in our hearts, as we know you have for Stefan.”
* * *
The Tomorrow Fund Helping families cope
When a child is diagnosed with cancer, a family’s life turns upside-down. Parents are frightened by the diagnosis, confused by the complex world of treatment, and stunned by how financially draining it is to care for a son or daughter with cancer.
That’s where the Tomorrow Fund steps in. For individual families, it provides emotional support and, if needed, pays bills. For all families of kids with cancer, it helps pay the salaries of specialists at the Tomorrow Fund clinic who make this medical crisis more bearable.
”We literally adopt families,” said Barbara Ducharme, executive director of the non-profit program that was created 20 years ago to help families cope with the financial and emotional strain of cancer. ”We give them whatever support they need.”
Helping parents meet basic financial needs is the component of the program that makes The Tomorrow Fund unique in the country, Ducharme said. It spends about $800,000 a year, aiding about 200 families and supporting the hematology and oncology division at Hasbro Children’s Hospital.
So many cancer costs ”fall through the cracks,” said Nancy Isabel, director of development. Most people don’t realize, she said, that a child diagnosed with cancer is likely to undergo at least two years of treatment, including 100 days in the hospital. An average of 100 kids a year are diagnosed.
For parents, the hidden costs mount: Daily parking fees at the hospital. Meals in the hospital cafeteria when parents stay around the clock. Co-pays for cancer drugs that cost as much as $2,000.
And if a parent has to take time off from work or even quit a job to care for a child, mortgage, utilities and grocery bills must still be paid.
The Tomorrow Fund helps with all of it.
In addition, the fund sponsors support groups for parents and patients — especially teenagers — who feel as though no one else knows what they’re going through.
And the fund helped pay for Hasbro’s Tomorrow Fund Clinic, where kids come for their frequent blood tests, examinations and outpatient chemotherapy. It paid artists to create bright murals in each treatment room, and it provides televisions, video games, toys, and arts and craft supplies.
It helps pay for staff members at the clinic, including a child- life specialist who helps kids feel comfortable at the hospital, and parent consultants — who’ve had a child with cancer — who serve as a liaison between the hospital and a patient’s family.
Still, even after 20 years, the Tomorrow Fund is often confused with the Make-A-Wish Foundation, which grants wishes to terminally ill children. That’s a wonderful organization, Ducharme said, but with a completely different mission.
The Tomorrow Fund, she said, doesn’t make just one wish come true: ”We’re with you forever.”
— LAURA MEADE KIRK
* * *
* CARICATURE by LEONARD SHALANSKY
* Dr. Forman cheers up patient Tori Beck, below, with a disappearing-coin magic trick, above, as her grandmother, Gloria Laurie, looks on. A humorous sketch, left, portraying Dr. Forman and his love of baseball hangs by the clinic reception desk.
JOURNAL PHOTOS / SANDOR BODO
* Michael Donovan holds his four-month-old son, Brian, with the animals of the mural at the Tomorrow Fund Clinic peering over them.
JOURNAL PHOTO / SANDOR BODO
* Patient Beth Wyman of Wakefield reacts as the staff of the Tomorrow Fund Clinic at Hasbro make their rounds on Halloween dressed
as a wedding party.
Dr. Edwin Forman wore a T-shirt tux, as the father of the bride. They won first place for group costumes in Lifespan’s employee contest.
JOURNAL PHOTO / GRETCHEN ERTL
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