LI man's loss of his son leads to stronger ties with dad

Phil Russo poses for a portrait with his father, Guy Russo, with family photographs of Phil's late son, Matthew, at Guy's East Northport home Thursday, June 12, 2014. Matthew was born with Down syndrome, diagnosed with leukemia at age 2, and passed away last year at age 7.

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Phil Russo and his father, Guy, plan Sunday to celebrate a bond strengthened by loss.

Last year, Phil Russo's son, Matt, died at home in his sleep at age 7. He had endured leukemia and chemotherapy for half his life.

Matt's ordeal inspired Phil to write a book, "Matt Taught Me," to give parents insight from his struggle.

But Phil credits his Italian immigrant father with teaching him how to keep living. "Without the lessons he taught me, there would be no way I'd still be standing," Phil, 48, said.

Matt's death brought Phil even closer to his father -- a man he already cherished.

Guy Russo, a 72-year-old East Northport resident who learned English at age 12 and became a Bank of New York vice president, spent days in hospital rooms with Matt, as Phil, an attorney, kept his Islandia law practice afloat.

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"I have even more respect for him than I ever did for the sacrifices that he made for me in retirement," said Phil, of Kings Park.

His grief and joy lie in the 170 pages he wrote -- a diary he would like to have published -- about life with Matt.

The boy was born with Down syndrome. When Matt saw babies, he would put his head on their chests and hug them; his shorts looked like long pants on his small frame; he would yell "hi" to strangers, thrusting out his right hand, his father said.

In 2008, when he was about 2, doctors diagnosed Matt with acute lymphoblastic leukemia, a cancer of the blood and bone marrow. He was admitted to the former Schneider Children's Hospital in New Hyde Park.

Phil slept by his son's bed for more than a month. Guy, along with Matt's grandmother, Caroline, relieved him in the mornings. Phil kept suits in the hospital closet, showered there and raced to court.

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Chemotherapy lasted more than two years. Matt was cancer-free for about 18 months before the first of two relapses.

"You think you have everything in life, but by going through an experience like this, you realize what truly is important in life," Phil said.

"The beauty of Matthew was that no matter what was going on, this kid had the ability to bring joy to anyone," he said.

After the second relapse, Phil lobbied for his son in September 2012 to join a 28-day clinical trial of a new drug at The Children's Hospital of Philadelphia.

"I felt like Superdad," Russo said. "Here it was, I was going to get my son cured."

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What happened on the second night of the trial was not expected. Matt woke up in bed, incoherent, babbling: "Ba Bye. Ba Bye."

Doctors put him in intensive care, on a ventilator.

"At this point, you're asking yourself as a parent, 'What have I done here?' Nothing is worth your kid being in this state," Phil said.

Phil called his father, who brought Matt's mother to Philadelphia, prepared for Matt to die. "This tank of a kid spent 11 days on life support and unbelievably came back," Phil said.

Phil Russo started writing his book then. He kept writing as Matt watched DVDs of Elmo and the Muppets -- his favorites -- while in hospice in November and December of 2012.

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The journal gave Phil something to hold onto as he waited.

But Matt died on Jan. 3, 2013.

"I wanted to memorialize the unbelievable and miraculous child that this kid was," said Phil, who has a 13-year-old daughter and a 21-year-old stepson.

Guy Russo said his family's ordeal reaffirmed lessons from his childhood that he passed to his son and 46-year-old daughter, Linda Messinger of Commack: Value your family and life. "You've got to be the best you can and keep going," he said.

Messinger plans to host a barbecue Sunday at her home with their mother and father.

On Father's Day -- and every day -- Phil said he will take to heart his father's wisdom: "Cherish every single moment you have with your child."

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