Sean’s Story

On April 19, 2011, my 15 year old son, Sean T. Cook who was attending Smithtown High School West was diagnosed with a rare childhood cancer called Mediastinal Germ Cell Tumors, as well as Stage 4 Bilateral Lung and Bone Metastases, a Large Left Pleural Effusion with Multiple Bilateral Pulmonary Nodules and a Right Scapula Fracture.  Sean was a very active and social child riding his bicycle all over Smithtown to Pediatric ICU overnight. Totally devastated by this heart wrenching news, the doctors at Columbia Presbyterian Morgan Stanley Children’s Hospital in NYC said Sean had a 50/50 chance and so it began with rounds of chemotherapy to shrink the tumor in Sean's chest so the surgeons could then attempt to remove it.  After each treatment, Sean needed blood and platelet transfusions but having multiple allergies to begin with, Sean ended up having allergic reactions to the platelets which then compromised him even more.  After many rounds of chemo and multiple surgeries, Sean was also diagnosed with Klinefelters Syndrome which can cause the tumors to keep coming back as they did. 

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That summer we were told about Kidz Charity Productionz, a group of local kids whose goal is to run a carnival type fundraiser each summer to raise money for local children who are sick and they contacted the Smithtown Children’s Foundation to ask if the foundation could assist them in raising the funds and getting the proceeds to our family for bills related to Sean's illness.  That is how the foundation first found out about Sean and our family’s struggle with Sean’s cancer.

The following summer of 2012, Sean had an Autologous Stem Cell Transplant which required a month in the hospital in isolation in hopes to rid these tumors once and fall all but then again came the horrible news, the tumors came back.  Sean then underwent radiation until the end of that year.  Unfortunately, his fight wasn't over as less than 2 months later, his tumor markers started to rise again.  Through all of this, Sean continued to do all of the things that he loved.  He was on the Smithtown Youth Bowling Team and the Smithtown Bowlympics Travel Team, totally surprising everyone with his ability to bowl so many games in a row without any complaints. He even bowled a 300 game!  He was also a member of Smithtown Fire Department Explorers, as a Jr. Firefighter.

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 On April 3, 2013, Sean underwent yet another surgery, this time to remove his Sternum.  Of course, we had high hopes for its’ success.  The surgeons removed 60% of his Sternum and three Ribs, replacing them with Titanium Plates and 18 Screws.  Once again, with Sean’s determination, he was out and about as Sean "The Man Of Steel!”

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 In May of that same year, the whole family went to Disney through the Make A Wish Foundation.  Sean had a blast going on every ride and enjoyed his time spent with his family but by weeks end, he was very tired and then on our last day in Disney, Sean (who rarely complained about anything) said he was feeling tired and sick.  The very next day, Memorial Day, despite how Sean was feeling; he just had to be a part of the Smithtown Fire Department parade and so he rode in the truck.  The next day, he had a fever of 101 and his chest x-ray showed he now had a Right Pleural Effusion and we were back in Columbia Hospital by the end of the day.  Once again, Sean underwent surgery to try and drain his lungs to make it easier for him to breath, however the news was devastating.  The tumors were taking over and there was nothing more they could do. They wanted to try and slow the tumor growth down to make Sean comfortable, so his doctor talked Sean into doing more chemo, which he reluctantly agreed to since it was such an exhausting task and he was tired. This did in fact make it possible for Sean to graduate high school, celebrate his 18th birthday out on a boat ride, have a huge party and become a Fire Fighter which made him so happy.  By early August, the kid on the bike who knew everyone in Smithtown had finally slowed down.

After daily visits to multiple local hospitals, the battle was getting harder to fight and Sean was getting tired.  He rarely used the pain medications that were available to him because he didn't like the way they made him feel.  He wanted to be as alert as possible.  Surrounded by his family and friends that final week, you could see Sean coming to terms with his fate.  He made his best friend "pinky swear" to take care of me and he somehow knew that it was his last night.  On August 23, 2013 at 6 am in my arms with his loving family around him, Sean T. Cook "The Man of Steel" took his last breath.  Heaven didn't gain just another angel that day.  It gained a Superhero!  

There are no words to describe how a family feels when faced with the type of loss that our family went through.  There are no words to describe a mother’s grief when faced with the loss of a child, and in Sean’s case, a child who suffered and fought to live for as long as he did.  But surrounded by loved ones, our family mourn the loss together, remembering all that Sean was in his short but beautiful life, remembering how Sean captivated our hearts with his resonating smile, and so now Sean, you soar with your angel wings in our hearts forever.

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