To raise the awareness and funds necessary
 to overcome pediatric brain tumors and to help
 the children and families affected by them.

Matt's Story

     

Every family remembers the day that their world was changed forever by cancer. For our family, that day came in September of 2002. The day started with what we thought would be a routine MRI, given because our 2 ½ year-old son Matthew had complained of frequent headaches and occasional nausea. We were certain that the radiologist would tell us that everything was fine and send us home. Instead, he gently placed his hand on Matt's mother Kelly's arm, and told us that Matthew had a pediatric brain tumor. For our family, and especially for Matthew, the world would never be the same.

     Additional tests would reveal that Matt had a rare form of pediatric brain tumor called Choroid Plexus Carcinoma located on his brain stem. We were fortunate to have chosen the Children's Hospital at Columbia Presbyterian for Matt's care and treatment. Dr. Garvin and his team were the ones to introduce us to the world of radiation, chemotherapy, brain shunts, stem-cell transplants, and feeding tubes. By the time Matthew was 3 years old, he had endured all of these procedures. These terms were deeply frightening to us, and each new procedure would add to our fear and our uncertainty.

     Matt was in remission for almost 3 years. He made amazing progress and rebuilt his weakened body. Despite stunted growth, total hearing loss in one ear, and some learning disabilities, he had an almost normal childhood during this period, except for his quarterly MRI scans and checkups.  He loved to go to school, play baseball and soccer, work in the yard, cook, fish, swim, and ride his bike.  In March 2006, Matthew’s cancer returned, this time on his spine. Sadly while undergoing 6 weeks of chemotherapy the tumor continued to grow. Our wonderful neurosurgeon, Dr. Feldstein, performed another successful surgery at Columbia and then Matt went back to Dr. Wolden for more radiation at Sloan Kettering. Future MRI's would show we were losing our battle. The cancer continued to spread  to Matt's lower spine and surgery was not an option.  Then we received more bad news, another tumor spot was growing in Matt's brain and he underwent another six weeks of radiation.

     In March of 2007, Matt had his fifth surgery, this one to relieve pressure from what had now become a life threatening tumor in his brain. Matt had always been able to recover quickly from surgery, but he could not this time.  After spending 10 days in  ICU, Matt returned home and was really struggling to recover. He could not sleep and was unable to eat, drink, or swallow  because of complications with his vocal chords. He received all his nutrition through his feeding tube. Matt was losing weight and was down to almost 25 pounds. He was dying.

     We then made the extremely difficult decision to put Matt under home hospice care. He was extremely  uncomfortable and needed additional drugs for pain management and sleep aid. Despite the fact he could barely sit in his wheelchair, he would  still talk of playing outside with his brothers and sister and of going to school to see his friends. While our friend Kirsten was sitting with Matt one day, he told her he was "Ready". "Ready for what Matt?" she asked. "I am ready to run the race with you!" he said. It was this spirit, courage and unbelievable strength that inspire us every day.

     Matthew James Larson passed away on April 30th, 2007, just one month after his seventh birthday. He was surrounded at home by his family and friends.

     During these difficult years, we have been blessed with an incredible team of doctors and nurses as well as friends, family, and a community who have been with us every step of the way. We can only imagine how much more difficult this journey would be  for families that do not have all the resources and support that we have been so fortunate to experience. We would often speak about how we wish we understood more about this terrible disease and how to cure it. We decided to take our own frustrations, fears, and most importantly our hopes for an eventual cure, and launch the Matthew Larson Foundation for Pediatric Brain Tumors, also known as IronMatt.org.

     Hopefully Matthew's story and your support and contributions will enable our foundation to help other families facing this crisis and to fund the crucial medical research needed to find a cure. We appreciate your interest and we hope that you will join us in our fight to end this terrible disease.

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