Kyle
November 13, 2009 was a day that our lives changed forever. Our beautiful son, Kyle had been feeling a little off for a few months. Low grade fever, poor appetite, difficulty breathing were things bugging him a bit. It never slowed him down as he continued to run, play and do the things any "normal" 5 year old boy would do.
On Thursday November 12, Kyle had his kick-off party for hockey season. He was going in to his second year, a Mite. He was so excited. He had been skating for a couple of years already and doing really well. I remember being so proud. At his party he complained of pain in his back. He wanted to go home. So not like Kyle who loved being the center of attention. We took him home early, and that night he woke up in what we thought was a night terror. His body was seizing up, and he was in pain. Again, we thought it was a nightmare and Leslie pet him back to sleep. It was then we decided to take him to another doctor to see if we could figure out what was wrong. The next day we took him in, he didn't look well; they did a blood test, immediately sending us to Children's Hospital in Minneapolis. It was that night that we first heard, "we think your son has cancer, we believe its A.L.L. leukemia, and we are 99% sure". Immediately I Googled it, and saw it had over a 90% cure rate. We were devastated, but felt like our Kyle would be one of the 90% who would beat this! We went through the weekend continuing this thinking. On Saturday we met Dr. Richards who told us, "Kyle has cancer, it's metastasized, but we don't think its Leukemia". It was right then, for the first time that we heard the word, Neuroblastoma. I Googled that, and saw his odds, we knew we were in for a long battle, and his chances for survival were slim.
Kyle fought so hard for 16 months. We moved to NY from our home in Minnesota to have him treated at Sloan Kettering Cancer Center in NYC. He went through multiple surgeries, blood transfusions, too many to count, 15 rounds of chemo, radiation and almost died, twice. He went through numerous clinical trials including MIBG therapy at Children's Hospital in Philadelphia. His disease load was shrinking, but never fully went away. His doctors felt like he was on his way to NED, and after the second MIBG therapy we were excited for his next scans, expecting it would clear him, as the first MIBG treatment had a positive impact. It was not to be. His disease was exploding. The tumor on his knee and back began to cause him significant pain. We brought him to Children's in Minneapolis for his radiation treatment on Friday, April 29th. It was that day that Dr Richards told us our only baby was "actively dying". We were stunned! We were planning on giving him the "kitchen sink" chemo regiment that Sloan recommends, we never got that far. Kyle never came home; he took his last breath at 11:53pm on Tuesday, May 3rd, 2011. We miss him more than words can say, he was our life, our baby and now he's gone. Our family of three is no more……
Kyle was an astonishing boy, an angel on earth. After he passed his doctors and nurses shared how he would help newly diagnosed children through their first steps in fighting cancer. He would comfort them; explaining how their central lines and ports would work, that the medicine wasn't that bad, and that they would be OK.
We now pledge to help other families fight cancer in Kyle's honor. Through Cookies you can make a difference, as this disease not only ravages children, but their entire families. Hold a bake sale, make a difference, be a Good Cookie...