The Tommy Detesco Fund

Tommy's Story

Beginnings

Having the experience of knowing Tommy Detesco cannot be appreciated without knowing his story.

Born in the Fall of 1974, Tommy was well cared for by his mom and his big sister Jennifer, who just turned 3 1/2 years old. At age two things were not so right for Tommy. A seizure would rack his small body. In the early 1970's finding the cause of a seizure was not quite as simple as it is today. CT scanning had just come on the scene, but using it in young children was not a common practice, and would not become so until a few years later. There were the rounds of many a Neurologist around the area in an effort to control the seizures that were now, unfortunately, a regular event.  Multiple medications followed over the next three and one half years. Almost by divine guidance Tommy was seen at Columbia Presbyterian Hospital in NYC by a young neurologist who had recently assumed the chairmanship at The Neurological Institute Pediatric Department.  Dr. Darryl DeVivo would continue as Tommy's Neurologist for the next seventeen years. A brain tumor was found by his team and surgery to remove the growth was done at Columbia Presbyterian by Dr. Bennett Stein.

Tommy - Summer of 1981, After His First SurgeryThe events following such a major operation on a child were at times an almost overwhelming experience for as parents you do not know the future. The network of cancer survivors at the pediatric level in those days was very basic and poorly organized and very much confined to where you were. During the first five years following his operation there were over 20 trips to NYC.
Looking back now more than twenty six years later, I notice something amazing emerging from all of this blur of frantic activity -consisting of constant vigilance for seizures, airports, taxis, hospitals countless doctors young and old, the intimidation of NYC and the unknown future all were around us. Out of all of that, a personality begins to take center stage, a personality that would be Tommy's presence all his days.  A youngster who would feel not at all uncomfortable being in either a big city or in a large sometime impersonal Institution. What I saw him doing way back then was being present in that moment.

As a youngster living in "the Moment" was surely what Tommy was doing on his own- no one ever prompted him.
During these years when one would likely be self absorbed with one's life situation as it might be called, Tommy was enjoying his life to the fullest.  These early years were an accumulation of Sesame Street and Mister Rogers.  Years later he could easily recount episodes and little details that would have alluded many of us. Tommy was also engaged in attending school, no easy task. He had received radiation therapy to the right side of his brain following the 1981 operation.  Radiation therapy in those days was crude by today's standards.  Unintentional radiation effect to more of his brain occurred. This would alter some of his developmental and cognitive areas of the brain. It became necessary by the second grade to move Tommy to a classroom environment that was dedicated to children with learning disabilities- an expression I initially found pejorative. A struggle followed with the Mahoning County school superintendent who was unwilling to authorize payment for the program needed by Tommy in the only place available, namely the Youngstown City Schools. I finally paid for all of this myself. This would prove to be only one of many points along the way where conflict would arise.

Inside this small, frail body of his, Tommy was becoming a whirling memory machine that only years later would reveal itself in its detail. Tommy at times appeared to be detached, perhaps the result of numerous medications used for seizure control in his early years. We later on would be treated to rambling detailed reminiscences of family trips, encounters with his siblings and various shows and events he attended.  He seemed to be taking in all the experiences around him, filing them away for later use! 
Among the information he was quietly storing away during the late 80's and 90's was a wealth of baseball information. He would immediately be able to recall which players card he had, which team they were with at the time. He also recalled all of the World Series match ups and winners of the series and game statistics. All of this is just a part of what Tommy soaked in over the years.

ADOLESCENCE AND YOUNG ADULTHOOD

Tommy and His FatherTommy graduated from high school in June 1994.  He faced the challenges of academics as well as taking part in a horticultural program through the school.  Tommy could tell you more about floral arrangements, ferns, grasses and the like than you could ever imagine.  As Tommy walked across the platform to accept his diploma, we, his family, and friends from school clapped.  Tommy had made quite a number of friends by becoming a 'manager' for the football team, so he became truly 'one of the guys'.  After high school, Tommy involved himself in the mahoning county mrdd program.  This is a sheltered workshop environment where people of varied levels of disability come together and work, play, go to classes and socialize.  Tommy was quickly appointed to the snack bar, a place where fellow clients could chat over a cup of coffee or some popcorn.  Tommy learned how to run the cash register, make change, and distribute food as needed.  He also eventually became in charge of pizza day, hot dog day, and sub day.  He enjoyed his autonomy in the snack bar, and even supervised two fellow workers.  He liked to be called "The King of Food Service."

It was from the workshop that Tommy's mom received a frightening call from the nurse one day in April 2001.  All staff members were aware of tommy's history with brain tumors, and the nurse had noticed Tommy stumbling and bumping into the tables in the snack bar area.  To make a long story short, Tommy's sister Jennifer picked Tommy up and took him to get an MRI immediately.  Unfortunately, the tumor that had remained stable through medication had suddenly had a growth spurt.  Tommy had surgery in May.  Luckily, everything went smoothly and Tommy's mom Lucille, sisters Jennifer and Maria, brother-in-law Shaun, and brother John were all able to go to Walt Disney World with Tommy in July.  WDW was always a favorite destination for Tommy, and although he had to curtail his roller coaster riding, Tommy enjoyed his trip immensely. 

Katie and Luca Visiting Uncle TommyTommy battled the brain tumors aggressively from that point on, getting MRI's, CT scans, and PET scans frequently.  Changes in chemotherapies became commonplace.  Thankfully, Tommy only had to travel to the Cleveland Clinic for appointments, and everyone accompanied Tommy at one time or another.

In 2002, another surgery was necessary to stem the growth of the tumor.  Tommy spent most of that summer at the Cleveland Clinic, with his mom by his side constantly and his dad spending the night with him.  This surgery was particularly rough, as Tommy's tired, fragile skin stubbornly refused to heal properly.  Fear of infection or worse was omnipresent.  Plastic surgery eventually closed the skin.  Tommy never liked to hear he needed another surgery, and in fact would try almost any other procedure in order to avoid surgery.  But when it was necessary, Tommy obliged.

The next few years were dotted with different chemotherapies, appointments with brain tumor experts in Cleveland, New York, Duke University, and Houston.  Some made him sick, some depleted his platelets, some made him lose his hair and weight.  But always Tommy faced the challenge and said "If that's what I have to do, then I will do it."

When Tommy stumbled to his mom's bedroom in the early morning hours of October 19, 2006, nothing unusual was suspected.  Tommy had an MRI a few days before, and things looked 'stable'.  But as soon as he reached her bedroom, he fell on his mother's bed.

CHANGES

Tommy Seeing Brother John off to PromThat day, October 19, 2006, would forever change Tommy's life, as well as everyone's close to him. A 911 call raced Tommy, mom, and dad to the local hospital for an emergency CT Scan. Findings were inconclusive, and so the decision to transport Tommy to Cleveland Clinic was made. Once there, Tommy's neurologist, neuro-oncologist, and various other physicians evaluated Tommy and attempted to figure out what happened. All the medical staff soon realized that Tommy had suffered from a brain herniation. Tommy's tumor had decided to spontaneously grow and push against other structures in his brain, immediately affecting his sight, hearing, balance, and coordination. More often than not, once a brain begins to herniate, it continues until it ultimately kills the patient. This takes usually a day, or two. Tommy's mom called his sisters, who were already on their way to the Cleveland Clinic, and told them to HURRY UP. The doctors felt that time was running out. Jennifer and Maria arrived in record time. Tommy always stayed on the same floor, on the same wing, with the same nurses, every time he needed to be admitted to the Cleveland Clinic, and Tommy's sisters knew the way by heart. Tommy was in the ICU, which meant he wasn't allowed more than two or three visitors at a time. Jennifer went in first – Tommy looked pretty good! And he was in good spirits....the only thing he really became concerned about was the fact that his birthday was in two days and he thought his sisters should've brought him his gifts early! Oh, it was good to see Tommy like that-happy, excited about his birthday, and already talking about what he wanted to do when he returned home. Reality hit the family hard when everyone realized Tommy may not even be returning home. His birthday celebration two days later in ICU was beautiful and heartbreaking. Everyone hoped Tommy would be able to come home one more time.

And so, on October 25, 2006 Tommy arrived home via ambulance. The family waited to see the ambulance come up the street and pull in the driveway. A hospital bed was already set up in the family room. No one knew how long this part of the journey would be.

EVERYDAY MIRACLES

TommyAs Tommy became acclimated to his familiar surroundings, he also became a bit more introspective. He sensed that something was not 'right', and although he never said so, Tommy began to get his things in order. Tommy collected many different objects – baseball cards, comic books, transformers, star wars action figures, hot wheels, star trek memorabilia-and he started asking his mother, brother, sisters, anyone to go in the attic and find a various article. After the object was retrieved, Tommy examined it, would explain who or what it was, when he first received it, where it came from, and how he used to play with it. He would then ask someone to write the information down, and return the object to his room. Luckily we found most of the things he asked us to!

Over the next few months, Tommy had a relatively stable existence – he would have a cup of coffee and a nutrigrain bar for breakfast, then his sister and nephew would come over. He would do the word puzzles with his mom in the USA Today. Everyone would watch Price is Right, and then have lunch together. Tommy's dad came over and did some breathing and leg exercises with him. An afternoon walk followed by a nap, dinner, crossword puzzles, and television rounded out the day. Visitors would pop over to say hi or bring ice cream. Tommy enjoyed Thanksgiving, Christmas, NewYear's Day, Valentine's Day, Fat Tuesday, Easter. As the holidays flew by, Tommy began to get a little more fatigued, a little less interested. Tommy celebrated birthdays with his parents and siblings and nephews.

FINAL CELEBRATIONS

In June 2007, Tommy lost his vision. His hearing was impaired. He needed a wheelchair to get around. But still he would say, “I love my life.” One of Tommy's final outings was to his nephew Luca's first birthday party. He couldn't get out of the car, so all the party-goers went to him!

By the last week of August, things began to happen quickly. Tommy did not want to get out of bed, did not want to eat, could not go to the bathroom. His breathing became labored, and irregular. Tommy slept more, and talked less. On August 30, 2007, Tommy's mom, dad, sisters Jennifer and Maria, and brother John, all slept in the family room with Tommy. 3:30am and everyone gathered around Tommy's bed. Seven minutes later, Tommy took his first breath in Heaven. And the journey came to an abrupt end.