By Jeffrey Klick, M.D., Director, Pediatric Palliative Care
When kids come to Children’s, our goal is to get them better so they can get back to the places they belong—at school, on playgrounds, in swimming pools. Sometimes, though, the seriousness of an illness makes it clear that a child’s time is limited, regardless of the top-notch care we provide. For those families, our people find a way to make the most of a child’s days, while also delicately preparing them for the unavoidable.
James was diagnosed in June of 2010 with a malignant spinal cord tumor, a tumor with almost no chance for cure. Having received excellent care from the neuro-oncology team at Scottish Rite, his disease, unfortunately, progressed. Due to difficulty breathing, he was admitted to the hospital in September of 2011. This turn proved to be the start of the end of his life.
Throughout the next month, the neuro-oncology team, the palliative care team and family worked together to make his remaining time the best it could be—medically and emotionally. His disease progressed despite our best efforts and we were forced to focus more and more on relieving his symptoms and supporting the family through the end of James’ life. Throughout all of this, his dad was at his side: hoping, praying, crying and laughing. Dad and James maintained hope throughout for the miracle of a cure of his disease. We supported him in that hope but also helped prepare them for the worst. With support from the medical team, James and Dad, together, decided that, if his disease were to progress, they would allow him to die a natural death, knowing that machines would not make him better or bring him back to a good life.
One of James’ last requests became a highlight for all involved: a Halloween party with all of his care providers dressed up in costume. This party became an important opportunity for closure for James, his dad, as well as his medical team. Following the party, Dad needed to travel back to Valdosta.
Unfortunately, overnight, with Dad away, James took a sharp turn for the worse. The medical team called Dad and informed him of the grave situation. Dad immediately began the drive to Atlanta in a complete state of distress and panic, begging the team over the phone to keep James alive. At this time, we were extremely concerned about his safety and, indeed, all the other drivers between Valdosta and Atlanta.
Thinking as a team, we reached out to the state troopers to find a way to get dad to the hospital quickly and safely. Lieutenant Warren of Troop H in Perry, Ga., listened and quickly understood the gravity of the whole situation. In less than 10 minutes, Lt. Warren had a plan, made contact with the father and called us to ensure good communication. Dad was directed to the Perry station where a patrol car was waiting to take him to Atlanta.
Trooper First Class Darryl Clark took over. Having corralled James’ father, he safely and quickly got him to Scottish Rite—essential as James was actively dying. We, oncology, working with the Pediatric Advanced Care and Pulmonary teams, were able to ensure James’ comfort and support his breathing, assuring him along the way that his dad would be there soon.
Officer Clark accompanied James’ dad into the hospital to assure he made it safely the whole way. In an effort to show his appreciation, he asked Officer Clark if he could introduce him to his son. Throughout the day, at Dad’s direct request, Officer Clark became an incredible support for James’ father.
We pulled Officer Clark aside to check how he was doing, knowing how hard it can be to see a child in James’ condition. He stated that it was “his honor” to be present in this situation. Recognizing the impact of his involvement, Officer Clark’s Lieutenant told him to stay as long as was needed.
Through the remaining hours of James’ life, the medical team provided updates on James’ condition. Before anyone started to speak, Dad would ask Officer Clark to sit next to him for support. These two big strong men—a trooper in full uniform and a retired marine—sat with their arms around each other’s shoulders. Officer Clark displayed a strength and honor that was incredible to behold, a strength that profoundly impacted all of us involved in James’ care.
James died that afternoon. Dad was there to be with James when he took his last breath. Officer Clark remained James’ personal honor guard. He then drove Dad safely back to South Georgia.
At our most desperate hour, the state patrol became an amazing partner in providing an essential piece to his care.