Nicholas’s Story

Erik and Shannon Koenig became parents on April 6, 2007 as they welcomed Nicholas into their family of two. While their sweet, baby boy entered the world on Good Friday, Erik and Shannon wouldn’t bring him home until nearly two months later. Before Nicholas and Shannon were cleared to go home, Nicholas was diagnosed with Pulmonary Atresia, meaning his pulmonary valve did not develop properly, and his heart was incapable of keeping blood flowing through his body.

Before Nicholas was one month old, he received open heart surgery. After five weeks spent recovering at the University of Minnesota’s Masonic Children’s Hospital, Nicholas came home.

Erik and Shannon were met with much more uncertainty and anxiety than many new parents experience. Instead of focusing on the typical ups and downs new parents inevitably face, the Koenig's experienced fear and uncertainty about whether Nicholas’s body would heal properly and allow him to lead a long, happy life.

Nicholas received a clean bill of health just after his second birthday. Not long after, Nicholas developed a fever and began showing almost flu-like symptoms. When his fever persisted, it became clear something more serious was going on. On June 24th, 2009, Nicholas’s blood work showed abnormal cells. The following day, a bone marrow biopsy determined Nicholas had Acute Myeloid Leukemia (AML); a cancer that starts inside the bone marrow where cancer grows from cells that would normally turn into white blood cells.

For the next six months, Nicholas received five rounds of chemotherapy spending four-and-a-half of those months isolated to his room. Because chemotherapy causes a weakened immune system, Nicholas couldn’t be around anyone who could possibly get him sick. In December 2009, two wonderful things happened: Nicholas’s AML was officially in remission, and Nicholas came home.

In February, 2010, the Koenig's welcomed their second child, Maggie, into the world. With a newborn baby girl and a healthy almost three-year-old boy, the Koenig's were all in one home, just enjoying being a family.

As summer came to an end, one of Nicholas’s regular oncology check-ups showed irregular blood counts. The cancer had returned and three-year-old Nicholas began another six-month stay at the University of Minnesota Masonic Children's Hospital after two rounds of chemotherapy, bone marrow/stem cell transplants, and isolation. Once again, the University of Minnesota Masonic Children's Hospital became home for Nicholas, Erik, and Shannon. But this time, Erik and Shannon were split between their two children. Due to Nicholas’s weakened immune system, he and his baby sister could spend only minimal time together.

This time, Nicholas’s remission lasted only three months. A bone marrow biopsy done on May 18, 2011 showed a second relapse. He once again underwent chemotherapy, but this time his body did not go into remission. On August 4th, the Koenig's were told there was nothing more that could be done.

Erik and Shannon brought Nicholas home the next day. They spent the next 11 days soaking up as much love, laughter, and family time as they could. Nicholas passed away peacefully on August 16th, 2011 as his loving parents held him in their arms. He was four years old.

Nicholas P Koenig with Family

The Nicholas P. Koenig H.E.R.O. Foundation was created as a way to keep Nicholas’s light burning bright and to provide support to families affected by pediatric cancer. Every story has a hero; and in this case it’s Nicholas. He touched so many lives during his short time with us, and because of him, many other children’s stories will forever be altered.

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  • April 6, 2007: Nicholas is born
  • April 6, 2007: Good Friday
  • April 9, 2007: Nicholas diagnosed with Pulmonary Atresia
  • May 1, 2007: Nicholas receives open heart surgery
  • June 9, 2007: Nicholas comes home
  • April 2009: Nicholas receives clean bill of health
  • June 24, 2009: Nicholas has abnormal cells
  • June 24, 2009: 1st ultrasound confirming Erik and Shannon 5.5-6 weeks pregnant
  • June 25, 2009: Nicholas has bone marrow biopsy and is diagnosed with Acute Myeloid Leukemia (AML)
  • December 11, 2009: Nicholas comes home
  • February 24, 2010: Maggie born
  • April 10, 2010: Make-a-Wish trip to Disney
  • August 13, 2010: Nicholas’s AML returns
  • August 17, 2010: Nicholas is re-admitted to the University of Minnesota Masonic Children's Hospital
  • November 15, 2010: Nicholas receives successful stem cell transplant
  • February 23, 2011: Nicholas comes home
  • February 24, 2011: Maggie’s 1st birthday
  • May 24, 2011: Nicholas has abnormal cells, AML 2nd Relapse
  • August 4, 2011: Doctors say there’s nothing more they can do
  • August 5, 2011: Nicholas comes home
  • August 16, 2011: Nicholas passes away
  • 2012: Erik & Shannon found the Nicholas P. Koenig H.E.R.O. Foundation
  • 2013: Andrew is born