Sean was born on July 30, 1986. He was a big, healthy baby with beautiful, big brown eyes. He had a peaceful and patient disposition, and I knew in my heart that he was different, unique, and exceptional. He lived the first seven years of his life in good health. He did what most little boys do; he played piano and soccer, attended Sunday school and played with his cousins and friends. He loved dinosaurs, animals, baseball and his brothers; he admired Jessie and adored Ryan. Even at such a young age, he was very nurturing.
In October 1993, after a long illness, he was diagnosed with Stage 4 Hodgkins and was treated with 8 months of chemotherapy and radiation. Initially I tried to shelter him, but he pushed himself to live his life as close to normal as he could. He continued to attend school with some modifications. He finished his treatments the following June.
After just a few short months the cancer returned. This time Sean needed a bone marrow transplant. There were no matches found in the family. The doctors searched the HLA Registry both in the USA and internationally, but still no matches were found. The doctors decided to do an autologous transplant. In preparation for the transplant he endured high-dose chemotherapy, surgery, radiation and lengthy hospital stays. He never complained or said “why me”, and he was always kind and respectful to everyone. His determination to live and be healthy both saddened and inspired me.
He received his first transplant at the University of Nebraska Medical Center in Omaha. At the time, I was expecting a baby, and Sean was thrilled. Sean and I stayed in Nebraska for several months. His dad would drive back and forth from New Jersey with his younger brother Ryan, while his older brother Jessie stayed behind to attend school. As a result of Sean’s weakened immune system, he had to remain in reverse isolation. When he felt well enough, we would play games and cards and do crafts. All that he endured appeared to be worth the sacrifice.
He went into remission, and we returned to New Jersey. We were all so grateful to be together and be home. Sean accompanied me for my ultrasound; he was with me to hear the baby’s heartbeat and to find out that he was having a little sister. Jillian was born in August of 1995. He nurtured, cared for, and loved her more than anyone or anything. He was only nine years old. He was an old soul in a child’s body. When Jillian was very young, she would refer to him as “my Seany” and he called her his baby. They had a special relationship. I refer to Sean as Jillian’s other mother.
Although Sean was home from the hospital, he wasn’t able to attend third grade because his immune system was still weakened. Sean slowly resumed his new normal life, which included boy scouts and little league. He was so happy to be well again. He lived his life with so much joy and passion, never taking a moment for granted. He celebrated the ordinary. He never complained of being bored and never asked for the new latest toy that was popular, although I bought it for him anyway. He was happy to be home playing with his siblings or outside on the swing set. Although he was young, Sean had a unique and wonderful sense of humor. Sean’s friends told me many stories of his antics. There was a time Sean was in high school, and his choir class was going from room to room singing Christmas carols. Sean decided to dress up as a Christmas tree, with lights and ornaments wrapped around him. He hopped from room to room to sing and make people laugh. Then he decided he wanted to be lit up, so he bounced his way to an outlet and plugged himself in. He really understood the meaning of life. Relationships were important to Sean, and he was blessed with many friends. He lived a life of compassion. In the midst of his own trials, he took time to help relieve the suffering of others.
During a previous hospital stay, Sean befriended a younger patient named Jesse Spina. Jesse shared some fears and concerns regarding his disease with Sean. Jesse’s mother spoke of a time he was to meet friends for a swim at a local pool. Jesse was embarrassed by the scarring on his chest. Sean advised him to tell his friends that he took a bullet in the chest for a girl. Jesse then proudly displayed his chest and had a lot of fun with his new alibi.
Jesse died on July 10, 2004. He left behind a legacy of compassion. He was informed of Sean’s need of an HLA match and as a result of Sean’s friendship and kindness to him, he wanted to help. He established Jesse’s Wish, a fund to help patients search for HLA matches and sponsor HLA registry drives.
Sean remained in remission for about 14 months. Then a routine scan revealed that the cancer was back. This time his doctors were unable to help him, and we were advised to take him home. We searched and prayed for someone to help. Dr. Tanya Trippett at Memorial Sloan Kettering Cancer Center (MSKCC) was an answer to that prayer. She told us that she would do everything she could to help save his life.
Since there were still no matches in the HLA registry, the doctors at MSKCC decided to do another autologous transplant. Sean had the second transplant in the summer of 1996. This time it failed immediately. He was put back on chemotherapy to keep him alive. He didn’t respond to the first few drugs and the doctors didn’t expect him to make it, but they kept trying. Against all odds, he responded to the third therapy they tried. This drug continued to control the disease, and he would continue receiving it for the next several years.
Sean never wanted cancer to define him; it was only an unfortunate part of his life. He would schedule his therapy around his baseball games. Sean was exceptional. During his years of treatment, he continued to live his life with passion. He played baseball, he was in a bowling league, he wrestled varsity his freshman year, he was on the track team. When sports became too difficult he focused on the arts. He was a gifted singer and was in the high school choir, which performed once in Carnegie Hall. He was a member of the drama club; he performed and led several productions. He also performed in Community Theater. He was in the national honor society and graduated high school with academic honors. He had his own radio show in high school and college. He was a volunteer firefighter and on the volunteer rescue squad. He worked part time and studied broadcast journalism at Rutgers University. Cancer pushed him to live.
When the doctors were sure that the cancer was at bay, they discontinued his chemotherapy. He was off of treatment for about 3 years, when yet again a routine scan determined that cancer had returned. He was put back on chemotherapy to control the disease. The doctors searched the HLA registry and the cord blood registry, and a partial match had become available. It wasn’t a perfect match, but it was as close as we were going to find.
The doctors recommended a bone marrow transplant using this partial-match cord blood as his best chance for a long life. It was not without risk, and Sean reluctantly agreed. He went into the hospital on August 29, 2006. He wanted to wait until after his brother’s, sister’s, and father’s summer birthdays had passed. He was always thinking of others.
Things went well for a while, but then he suffered one complication after another. There were several times he almost died, but he always beat the odds. I know Sean wouldn’t want us to talk about all the terrible things he endured. He didn’t want cancer to define him.
He was in the hospital for nearly a year and impacted many lives while he was there. Although Sean was very ill, he still took time to thank the staff. He would tell the nurses to be careful on their way home. He told me he loved me and thanked me for taking care of him, and told me he didn’t know what he would do without me. He would take the time to stop and talk to the little children in the hallways. He made people feel special, and people wanted to be in his presence.
On April 28, 2007, Sean went home. He was surrounded by his family and friends, and covered with love. He succumbed to graft versus host disease, but was cancer free.
Although we had Sean here for only a short time, the effects of his love and life will live on. There were thousands of people in attendance at his service, and hundreds of cars in the funeral procession. At his funeral there were countless stories of how Sean touched people’s lives and made them feel special. His doctor said that Sean was the most inspirational person he had ever met.
After the services, one of Sean’s uncles wrote to me, saying, “When I heard Sean wasn’t doing well, I thought maybe it would have been better if he would have died as a child and been spared of so much pain. But after attending his service, and hearing story after story of the impact that he had on people’s lives, I realized that everyone dies, but not everyone truly lives. Sean had an indomitable spirit.”
Sean was a hero who handled the unfortunate circumstances of his life with grace and dignity. The way Sean lived his life is a painful but constant reminder of how to appreciate the blessings in my own. Sean’s life was a celebration of the human spirit.
Sean may have been young, but he leaves behind a beautiful legacy. What my son taught me about life and love is invaluable. Although the pain of loss is unfathomable, I am a better person for having had Sean in my life. I am blessed to be his mother.
What Cancer Can Do
– It can teach you to celebrate the ordinary
– It can encourage you to live a life of passion and compassion
– It can promote new dreams
– It can humble you and enhance your humanity
– It can heighten gratitude
– It can challenge you to become adaptable
– It can expand your heart and increase your capacity to love