I’m running the Twin Cities Marathon in honor of my son Mason, who passed away at the age of 8 at St. Paul Children’s hospital on October 18th, 2015. Mason came into our lives through adoption from foster care. He was born with cerebral palsy and did not walk or talk but this never stopped him from living a full life and having plenty of personality! Despite his challenges he was doing very well until April 2015 when suddenly he stopped tolerating his tube feeds. He was hospitalized twice but no one knew why he would tolerate feeds sometimes and not others. May and June passed and he slowly started tolerating his feeds less and less and he was losing weight. He spent 3 weeks at Children’s undergoing a surgery and eventually placement of a tube to feed directly in his small intestine instead of his stomach. We thought this was the answer but the tube into his small intestine wouldn’t stay in place for a number of reasons. On September 8th he underwent a surgery to bypass his stomach entirely and provide nutrition directly into his stomach.  By this point he’d lost quite a bit of weight and we were anxious to get him back to full feeds. However, 2 days after he was discharged from the hospital he became very ill and was life flighted back to Children’s in severe septic shock. The doctors told us that night they were unsure if he’d make it through the night. He required emergency surgery where it was found that the previous surgery had caused a part of his bowel to twist and 90% of his small intestine had died. He was left with very little small intestine and was going to require lifelong IV nutrition as he would no longer have enough intestine left to absorb nutrients. Throughout the next month his body was riddled with many complications from abdominal abscesses, blood clots, malnutrition, and significant pain. During this entire time the staff at Children’s hospital provided us with incredible support. From doctors and nurses to Child Life staff, social workers, and housekeeping staff we received the absolute best care.

We spoke one day with one of Mason’s doctors and asked him what he would do if Mason were his son. Would he continue every possible treatment and life support or would he value comfort and quality of life over quantity? He told us that he would put himself in that bed and that he did not feel it was unreasonable to stop some interventions. We chose to get palliative care involved which would prove to be the best decision we would ever make. They set up a care conference where we met with all of Mason’s care providers and they helped us muddle through some incredibly difficult decisions.

Due to Mason having lived his life in and out of different homes in foster care he was very anxious about new people and places. We knew he hated all the people coming in and out of his room and poking and prodding him. The palliative care team encouraged us to consider the expense to Mason’s body and emotional health and weigh the benefits of continued treatment. We could see that Mason’s body was very tired, he was withering away and the treatments were causing him a lot of pain and anxiety without the benefit we were looking for. He had become a shell of the boy he once was. We chose to take him home on hospice and give him the best life he could have in the comfort of his home. We spent 3 days at home on hospice before Mason quickly declined and we made the decision to take him back to Children’s, our home away from home, with people who knew him well and that we’d grown to love. The palliative care team made the transition back into the hospital seamless and Child Life provided us and our other children with support and helped us make lasting memories with him.

Two days later, on October 18th, Mason passed away peacefully. His body was tired and he was finally freed from the pain and suffering that he’d been enduring.

Mason never ran or walked a day in his life. He experienced greater struggles than anyone I’ve known and yet he never gave up, he continued to fight until his very last breath. I’m running because I can, because the sacrifices and struggle of training for something like this pale in comparison to what he faced. I’m running because Children’s hospital is a place that provided our family with so much more than just a hospital bed and medical care. Please consider honoring Mason’s memory by making a donation to Children’s Hospitals and Clinics of Minnesota.