The Tommy Detesco Fund

A Fathers Story

Dr. Thomas Detesco - Father of Tommy Detesco

A life worth recounting sometimes begins with a simple phrase. Such would be the way to describe the life of my son, Tommy Detesco. The phrase is a deceptively simple one that he would spontaneously recite: "You know, I really love my life." These words would set him apart from most people almost immediately. What I believe Tommy was telling us is that he was perfectly content just as he was, and had no need for the layers of pride, power, security, and adulation that some are never able to go without. He was blessed with interior peace and a clear vision of oneself that few are privileged to experience.

His humility, trust, and gentleness gave him a freedom to consent immediately to all that God had designed for him. This same freedom is a reflection of his love. Tommy's example would transform me and many others by his finding of God in all things. Transformation as I have described can only take place in the presence of a truly powerful figure, or at a time of overwhelming circumstances. Tommy was that figure.

Graduation Day!Tommy was thought to be a person with special needs; I would rather think he was a special person serving our needs. The months that passed while we were standing alert for him become a reminder of always being in the present moment, as we did not know when a change would take place. The lesson of awareness of the present moment was one of his most important gifts to us. Looking back, over the years he had been quietly consenting to a plan of God's design, making him our teacher. Tommy is with me as much today as he has ever been, by his example of surrender and acceptance which opened him to the presence of God. I carry that example with me and try to see things as I imagine he was able to. When I would inquire as to just how he would accomplish this, he would be silent; I know now that the silence was the answer; remain still and accept the present moment for what it is. He probably wondered what was so difficult for me to understand. He was nevertheless patient with me and simply continued his example.

Tommy's journey was a long and difficult one. He rarely complained. He simply asked what was going to happen, and then calmly would go forward with whatever was required. Each instance was an opportunity to reveal the hand of God on him. This was made clear with each operation, radiation treatment, chemotherapy, or complication of treatment that would span 30 of his 32 years.

Sister Maria and TommyEven with all that I have described, Tommy was not defined by illness. He would derive maximal enjoyment from whatever was going on at any particular time.  He was able to travel with his mother and would recount exactly the places, times,  and events that were part of each trip. He was an avid collector; he was at one time a baseball player, and at another, a movie wiz.

I would be remiss without thanking many who have aided in Tommy's care over the years. Many physicians were part of his life, none playing a bigger role than Dr.  Darryl DeVivo at Columbia Presbyterian in New York, where Tommy was followed for the first 18 years. Subsequently Tommy's care was moved to, primarily, the Cleveland Clinic Brain Tumor Institute. Dr. David Peereboom and Dr. Bruce Cohen, along with surgeons Mark Lucciano and Gene Barnett, directed his care. At other times we traveled to the Duke University Brain Tumor Center, Memorial Sloan Kettering Cancer Center,  and to MD Anderson Cancer Center. A host of support personnel at these institutions became friends as well as caregivers; none was more caring and committed than nurse Mary Miller at the Cleveland Clinic Tausig Cancer Center.

Tommy, Mom, Maria, Jennifer and JohnFamily members will always determine how someone with a chronic disease will do; Tommy's sisters Jennifer and Maria were always able to keep a positive attitude and were excellent at dispelling  anxiety and fear. Tommy's brother John, born just two months after Tommy's first operation, grew up with the awareness of being his brother's protector. John became a major daily caregiver, many times placing his commitment to Tommy above his personal plans. John's love for Tommy became an example for many of John's friends who had come to know and respect Tommy. Katie needs special mention with the family. She unselfishly gave her time and love to Tommy.  Ultimately, Tommy's mother deserves immeasurable praise and respect for the lifetime of commitment. Anyone who has not walked a journey such as this will have no way of appreciating what was required of her. She best exemplifies what one of the neurologists at the Cleveland Clinic said. This physician, having experienced a similar event with a young family member himself, remarked that Tommy did so well for such a long period because of the loving care and support that could only come from the people closest to him. Lucille is and always has been at the top of that list.

Tommy's simple but powerful legacy will continue on in his family members.  The gift that he was to us has changed me and others forever. The recent months we have had with him were a special opportunity to focus on Tommy and be treated to a new wave of insight and uninhibited wisdom one last time. It was as though he was providing a reassuring message that the spirit we had loved so much would always be present, even beyond his physical departure. I am proud to have been the father of Tommy Detesco, a kind, uncomplicated person, one who was able to make simple and clear the lessons in living that we all find so complex.

Thomas N. Detesco M.D.