THE MICHAEL MAGRO FOUNDATION

Out of the Clear Blue Sky

by Ezra Goldstein

Filed under | Living With Cancer | Hodgkin Lymphoma

Out of the Clear Blue Sky
The Magros with friends.
 
Ezra Goldstein edits the Civic News for the Park Slope Civic Council and recently finished a young-adult novel based on the real-life experiences of a survivor of the Holocaust. His play, Swimming With Sturgeon, was produced by New York’s Abingdon Theatre Company.
 

Before Terrie Magro got married in 1983, her last name was Combatti, which seems almost too perfect. Combatti means “fight” in Italian—as in “Fight for your children” or “Fight to make life easier for families who are going through what you went through.” Those are two things Terrie Combatti Magro has done in spades.

Not that Terrie is a combatant in the intimidating sense of the word. Twenty years ago, she changed careers from clinical nursing to medical sales. When Terrie says it was an easy transition because “I discovered sales was something I was good at,” the reasons why seem obvious. She is friendly and engaging, disarmingly open and honest.

Terrie also has a smile that comes so naturally and transforms her face so thoroughly that one can only imagine how hard it must have been to lose that smile in the awful time four years ago when she and her husband, Paul, discovered that both their sons had cancer.

The nightmare that would forever change the Magros’ life began in March 2004, when their younger son, Marc, reported feeling a lump on his neck. Up until then, Marc, 10, and his older brother, Michael, 13, had enjoyed almost perfect health.

Indeed, the whole family had been living their own version of “It’s a Wonderful Life” on New York’s Long Island, and if a movie is ever made of their lives it would probably start with the story of how Terrie met Paul.

It was 1978, and Paul’s left leg had been so severely fractured in a car accident that an orthopedic surgeon summoned to the emergency room at St. Francis Hospital in Roslyn, NY said it might have to be amputated. Doctors saved the leg, but Paul ended up spending four months at St. Francis, where Terrie was working as a nurse.

One day at the end of a 3-11 pm shift, Terrie was waiting for a nurse friend on Paul’s floor to finish up some paperwork. “She says go hang out with the guy in room 217 until I’m done because he’s a lot of fun,” Terrie recalls, flashing her trademark smile, “and she was right. Lots of times after that a whole bunch of us would go visit Paul after work.”

After Paul was discharged he went off to study at the Culinary Institute of America and the two lost touch, but then, one day in 1981, Paul came back to the hospital to pick up his stepfather, who had been at St. Francis for surgery (Paul’s father had died a few years earlier). For nostalgia’s sake, he decided to visit his old room, 217.

An orderly spotted him and called Terrie, who had just finished her shift and was getting ready to go home. The orderly told her to stay put because he was going to send Paul her way to say hello.

The two were married in 1983. They bought a house in the Long Island town of Hicksville because their families lived close by and because it had good train service into Manhattan, where Paul, by then a chef, often worked late into the night.

At first their dream was to open their own restaurant, but after weighing all the pros and cons – there are few businesses where the risks are greater and the work is harder – they decided on a different course. Paul became a full-time teacher in culinary arts at Barry Tech, a career and technical education center serving high school students from all over Nassau County, which includes about half of Long Island. Terrie moved into medical sales. With both Paul and Terrie working normal hours for the first time in their professional lives, they set about starting a family.

Michael was born Nov. 3, 1990 and Marc came 28 months later, on March 18, 1993. The boys were healthy, happy youngsters doted over by the extended and close-knit Magro and Combatti families.

Marc was the more studious; Michael, devoted to lacrosse, the more athletic. The comfortable Magro home on Julian Street became a kind of community center where you could find upwards of 25 kids on a typical Friday night.

Then Marc found that lump on his neck, just a few days before his 11th birthday.

Terrie, the one-time nurse, felt the lump and thought that Marc might have come down with mononucleosis. She took him to their pediatrician, who prescribed antibiotics and predicted that the lump would soon start shrinking in size.

Two days passed with no change, then a week. The doctor suggested an ultrasound, which showed nothing, then a chest x-ray.

When the x-ray technicians refused to tell Terrie what they had found, she recalls, “I just had this feeling that something wasn’t right. I had taken Marc out of school and decided I’d take him out to lunch, then go back to the radiologist’s office and try again to see the x-ray.

“We were sitting in the car after lunch, about to head back, when my cell phone rings. It was the pediatrician and he says, ‘You’ve got to listen to me really closely. This was not the result we wanted to see. Marc has tumors in his neck and his chest down to the nipple level.’

“So I get hysterical, crying in the car, this poor child sitting next to me – it’s the day before his 11th birthday and we’re getting this news. I couldn’t even comprehend what the doctor was saying, I was so upset.”

Somehow she managed to call Paul and her brother, Greg, who was working close by, and they came and drove Terrie and Marc to the Cancer Center for Kids at NYU Winthrop University Hospital in Mineola, about 10 miles from Hicksville. The pediatrician had arranged for them to meet immediately with Dr. Mark Weinblatt, NYU Winthrop’s chief pediatric hematologist and oncologist.

By the time they got to NYU Winthrop, Terrie had resolved to pull herself together. “I had always been on the other side of the fence,” she says, “helping people understand what the doctor had just told them. Now I was on the other side and I told myself, ‘You’ve got to get a grip, don’t be the mother right now, be the nurse, and figure this thing out.’

“From that point on, I went into take-no-prisoners mode. I was going to do whatever I could for my boy.”

Dr. Weinblatt ordered a bone marrow aspiration and it was quickly determined that Marc had Hodgkin’s lymphoma. Within days, Marc had started on a regimen of chemotherapy, to be followed with radiation.

“If you’re going to have a childhood cancer thrown at you, Hodgkin’s is the best of the worst because it has a high cure rate,” says Terrie, “and I decided that’s what we were going to be grateful for.”

Marc was a good patient—Terrie thinks it helped a lot that he was always kept fully informed about his condition, and understood what was going on—and he was able to complete the full course of treatment without ever being admitted to the hospital. Still, as Terrie recalls, “there was a lot of pain with the chemotherapy, a lot of trauma.”

It was especially hard for Michael to watch his brother suffer. The two boys were exceptionally close.

“Michael was devastated when he heard the diagnosis, and sometimes he would cry because Marc was in such pain. But he was a great cheerleader for Marc, telling him he was a fighter, that he’d be fine.”

By late May, things were looking up. Marc was almost done with radiation therapy, and the treatment seemed to be working. The Friday night of Memorial Day weekend, there was the normal houseful of kids when one of Michael’s buddies told Terrie that Michael had fallen asleep amidst all the hubbub.

“After all the kids left I went upstairs and asked Mike ‘What’s up?’ and he’s like, ‘I don’t know. Everything’s achy, and I have this cough.’ I say, ‘You know, you’ve really been pushing,’ because it was almost the end of the school year and all the projects and tests and everything were due. It was also the height of lacrosse season, so he was practicing every single day and they were playing a lot of games. So I say, ‘You’re wiped. You probably just need to chill.’”

Terrie gave Michael Tylenol Cold and Flu but he kept complaining about feeling tired and achy. On Memorial Day, the family went to a barbecue where a nurse friend told Terrie that Michael looked ‘punky.’ Terrie had to agree.

The next day, Terrie took Michael to their pediatrician, who took a blood test. Michael’s white blood count was elevated but it was nothing drastic, so the doctor recommended staying with the Tylenol and cough medicine. Michael went to school and played lacrosse but continued to complain about not feeling right. Plus, says Terrie, he wasn’t looking anything like his normal healthy, energetic self. So she took him back to the pediatrician, who sent Michael for a chest x-ray.

“The x-ray showed that Michael had pneumonia in the lower lobe of his right lung,” Terrie recalls, “so I said, okay, we’re on to something now. We know what he’s got. We know what we’re dealing with.”

The doctor began treating Michael for pneumonia, but a week later he was feeling even worse, so he went in for a second x-ray. Michael had a big test that day, so after the x-ray, Terrie dropped him off at school. Almost as soon as she had done so, she got a call from the pediatrician.

“He says, ‘I just got the report and the pneumonia is now in the lower and middle lobes. Check him out of school and bring him over to NYU Winthrop. We need to evaluate him a little more, and because he’s having a little difficulty breathing, maybe we need to put a chest tube in and drain the fluid out of his lungs.’ This makes sense to me. I’m on board with it. I go back and get Mike and I call Paul and tell him he should leave work and meet us at the hospital.

“So I take Michael to NYU Winthrop, but when I get there they say they want to do a CAT scan and this doesn’t make any sense to me. Why do a CAT scan for pneumonia? After they do the scan, they put us in a room in the pediatric ICU, and this doesn’t make any sense to me either. I ask a friend of mine who works there what’s going on and she tells me not to worry, it’s only because all the other rooms are full.”

Paul, feeling reassured, left to pick up Marc from school. Then, Terrie relates, “I see our pediatrician and Dr. Igal Fligman, a pediatric oncologist who works with Dr. Weinblatt, and I wonder what they’re doing there. They talk for several minutes then they start walking toward us and my heart sinks.

“Dr. Fligman looks at me and he can’t talk he’s so upset. Finally he says, ‘I don’t know how to say this,’ and I’m thinking, this can’t be happening, I’m going to have a stroke.”

The CAT scan showed that Michael, too, had cancer, which was soon diagnosed as Acute Lymphocytic Leukemia (ALL) with a rare T-cell variation. Terrie found out later that their pediatrician had seen something suspicious on the chest x-ray, which is why he ordered the CAT scan. He had been unable to bring himself to say anything to the Magros until his worst fears were confirmed.

Dr. Weinblatt, who Terrie says was devastated himself, started Michael immediately on a regimen of chemotherapy.

Marc had been healthy when his Hodgkin’s lymphoma was discovered, but Michael’s condition was already severely compromised by pneumonia. Also, Michael’s age placed him in a high-risk group, and the Magros were told that he would need heavy doses of radiation therapy that could have damaging side effects.

The pain in Terrie’s eyes betrays the matter-of-fact manner in which she relays this information, and relives that terrible summer.

At first, the chemotherapy seemed to be working. Bone marrow aspirations taken at one week and 28 days looked positive, but Michael, lean and athletic, kept losing weight because he was having trouble eating. He was also having increasing difficulty breathing and was going in and out of the hospital. On July 24, the day before Marc’s final radiation treatment, Michael was admitted to NYU Winthrop for the last time.

“Michael says to me, ‘I can’t breath. I’m so scared,’” Terrie recalls, describing how they could see from x-rays what a poor job his lungs were doing exchanging CO2 for oxygen.

As with Marc, the Magros had kept nothing from Michael. They told him how bad the x-rays looked, and that he might have to go on a ventilator, which meant that he wouldn’t be able to talk.

“The thought of the ventilator and not being able to talk made him very agitated,” says Terrie, “but I told him it would only be for a couple of days, until we got his oxygen level back up, so he agreed to it.”

But even with the ventilator, Michael was unable to move oxygen from his lungs to his organs and extremities. The doctors tried everything. They put him into a medically induced coma to lower his body’s demand for oxygen, but still his CO2 levels were way too high, his oxygen levels way too low. His kidneys began to fail, and the nurse in Terrie knew that not enough oxygen was getting to her son’s brain—that there had to be damage.

An aunt and uncle had taken Marc to a Long Island beach for a few days, but on Thursday, Terrie called and said they had better come back.

Friday night, July 30, 2004, his hospital room filled with relatives and friends, Michael died.

“It was the same time on Friday when Michael had his parties,” says Terrie. “It was almost like his soul decided the time had come to leave his body.”

Within days of Michael’s death, two events occurred that foretold what would come next. The Magros’ neighbors had been planning a blood drive on Michael’s behalf, because he needed so many transfusions. They asked the family if they should go ahead and the Magros said absolutely. Well over 100 people donated blood.

Then, many in the overflow crowd that attended Michael’s wake left donations and the Magros had to decide what to do with the money. They held a family meeting and considered the options. Their decision: because Michael had missed playing his X-Box video games the many times he was in the hospital, they bought two television sets on rolling carts, two X-Box consoles and a bunch of X-Box games, and then donated it all to the in-patient pediatric unit at NYU Winthrop University Hospital in Michael’s name.

“That started everything,” Terrie says.

The Magros live about 20 minutes from the Cancer Center and are surrounded by a large support network of family and friends. But they had seen that many of the other parents who brought their children to the Center came from far greater distances and had no one to help out. Some of the children came from single-parent homes, or from homes where there wasn’t much money or medical insurance.

In the hundreds of hours they had spent at NYU Winthrop, the Magros had also developed a great appreciation for the Child Life specialists in the Cancer Center for Kids and the pediatric unit. These specialists are trained to help children and their families through the enormous stresses of hospitalization. They provide everything from emotional and educational support to music therapy and arts and crafts. They are not, however, considered part of the clinical staff, so none of their work, as valuable as it is, is supported by insurance.

“So we went to the hospital and said we want to set up a foundation in Michael’s name but said we must have complete control of the dollars,” says Terrie. “We want 100 percent of the money to go to the kids or the families or the programs run by the Child Life specialists. We don’t want it routed through some other fund.

“To their enormous credit, they said they were fine with everything we asked for.”

The Michael Magro Foundation was officially incorporated as a non-profit organization in January 2005. In the three years since, it has given out some $200,000—100 percent of what it has taken in—in a variety of creative ways. Their mission, Terrie told a local newspaper, the Hicksville Illustrated News, “is to look to the small gifts that can make a child or family member smile for the moment.”

For example, the foundation buys gift cards to places like grocery stores, gas stations, Best Buy and Blockbuster Video. The gift cards are passed on to families by the Child Life specialists and other hospital staff, sensing what might cheer them up or help them out the most.

“People don’t realize everything that happens when your child becomes seriously ill,” says Terrie. “Suddenly you’re taking more and more time off work. You’re coming to the hospital for what you think is half an hour and it turns into eight and you didn’t bring any food with you. You’re driving hundreds of extra miles. You’re worried about who’s going to make dinner, and whether your other kids feel like they’re getting pushed aside.

“Suddenly you’re paying out an extra three or four hundred dollars a month for things like gas, parking and fast food, and it all comes crashing down on you at the same time. A gift card for a tank of gasoline might not seem like much, but it can make a tremendous difference.”

The foundation has purchased laptops for kids to use in the hospital. It recently gave $30,000 to the Cancer Center for Kids’ Project Soar, which helps young patients make the sometimes difficult transition back to school—working not just with the kids but with their teachers and classmates.

Last year, the foundation gave NYU Winthrop Hospital a machine called a Veinviewer Imaging System, which makes it easier for technicians to find the veins they need to do blood work and insert IVs, making these procedures less stressful for children.

“The Magro family has been unbelievable,” says Dr. Weinblatt.

“They have been able to turn something so sad into something very positive for so many other people. They are extraordinary people.

“The foundation focuses on the ancillary things, the quality of life issues for our patients, making sure people have food, transportation and other necessities, making sure that children get gifts on their birthdays and at Christmas time. Little things like that – things that people often don’t think about—can make a world of difference to frightened children and their families.”

Dr. Warren Rosenfeld, chairman of pediatrics at the Hagedorn pediatric unit at NYU Winthrop, admits to being in awe of the Magros.

“They have this ability to give to others and to do so with great compassion. Sometimes, when I need a pick-me-up, I see Terrie and I just feel better about life. I admire so much the way they’ve been able to move on and do wonderful things for other people. And, sadly, through personal experience, they have great insight into what families go through and what they really need.”

The Foundation’s major annual fundraiser is called “An Evening of Tasting and Giving.” The centerpiece of the event, which draws some 400 people, is the food donated by Paul’s chef friends at some of Long Island’s finest restaurants and bakeries. Merchants and individuals contribute a wide variety of other items, from wine to go with the food to items for live and silent auctions.

On October 7, the fourth annual Evening of Tasting will honor Michael’s friends, the class of 2009 at Hicksville High School. If Michael had lived, he, too, would have been entering his senior year in the fall. Next year, the evening will honor cancer survivors.

Other fundraisers include an annual car wash at Barry Tech, where Paul teaches. Frassanito’s Jewelers in Huntington, Long Island, has a pre-Mothers’ Day sale in which part of the proceeds goes to the Foundation. The blood drive, at a firehouse in Hicksville, has become an annual event.

One of the more creative and still-evolving fund raisers, which the Magros’ dentist helped set up, involves several of the world’s best pool players at the Cue Bar, in Bayside, Queens.

“Last year, we counted on people making voluntary contributions to watch the pros play,” says Marc Magro, just home from Hicksville High, where he will be a sophomore in the fall. “This year we’ll be a bit smarter and charge people to watch. They can also pay to play with the pros, which should be very, very cool.”

Marc, who has been cancer free for nearly four years now, has the poise and composure of someone much older than 15.

Marc remembers how scared he was for Michael, and says, “We fought a lot, the way brothers do, but we were also always looking out for each other. I miss him a lot. I help out at the foundation as much as I can.”

Marc sits at a table on a deck just off the kitchen of the Magros’ home. Behind him, there’s a koi pond with a waterfall, which the Magros installed in Michael’s memory. Terrie says that Michael was always saying they should put a fish pond in the backyard.

But all the talk about Michael, all the memories and memorials, do not mean that Terrie, Paul and Marc live in the past or are paralyzed by their grief.

“Starting the foundation kept me going,” says Terrie. “I realized I had two choices: I could turn into Jello or I could go out there and do something.”

Terrie admits that it is only very recently that she has finally allowed herself to believe that she is not to blame—that there is nothing more she or anyone else could have done for Michael. “I realize now that we did everything possible,” says Terrie, who details all the specialists they talked to, all the consultations they had with some of the best pediatric cancer doctors in the country. “There was just no way to save Michael. His job, his mission on this physical earth, was done.”

The Magros also had their genes examined, their water tested, their family histories analyzed in an attempt to understand why their two sons contracted cancer within months of one another.

“The problem is, the etiology is unknown,” Terrie says, using the medical word for the causes of disease. Then, with a sigh that expresses hard-earned acceptance, she adds, “It just happened. It just came out of the clear blue sky.”

That evening, in early June, Terrie, Marc and Paul would go to awards night at Hicksville High School to present two scholarships in Michael’s name to graduating seniors—something else the foundation does.

The school selects the winners according to the Magros’ criteria: the students must be kids who aren’t at the top of their class but who work very, very hard and do as well as they can.

“That’s the kind of kid Michael was,” says Terrie, “and these are the kids who too often aren’t recognized for how hard they work.”

Terrie says she hopes the scholarships will make a small difference in how the recipients think about themselves, and give them a bit more confidence as they move on. The same thing might be said about everything the Magros have done for other people since Michael’s death.

It’s what the Magros and the Michael Magro Foundation are all about: Combatti! Fight to make a small difference that could end up being a big difference in someone’s life.

For more information about the Michael Magro Foundation, visit the non-profit’s website.

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Ezra Goldstein, a writer living in Brooklyn, edits the Civic News for the Park Slope Civic Council and recently finished a young-adult novel based on the real-life experiences of a survivor of the Holocaust. His play, Swimming With Sturgeon, was produced by New York’s Abingdon Theatre Company.