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An oncology nurse recalls how a young patient with Ewing sarcoma she helped care for taught her about bravery and being honest with patients. Here, she writes how he made her a better nurse.
Working in oncology has never been short on challenges, both emotional and intellectual. I sometimes question why I chose this specialty, although after all these years I could never see myself any place else. I recently had the privilege of taking care of an extraordinary young man.
James was special in every way. He was bright, well-spoken, quiet yet always friendly and warm. At 22, he was stuck where the world of pediatrics meets adult care. When I first met James, he often came to the clinic alone. I hardly saw his parents. Determined to assert his independence, he drove himself to his appointment and scheduled his treatments around his college classes and the part time job he also maintained.
During his year-plus long treatment for Ewing sarcoma, we had grown quite close and I looked forward to his weekly visits. His understated sense of humor was never lost on me. We both loved football. James had made it through treatment with few complications, delays or infections. James always amazed me in his capacity for strength, endurance and love. He had the most amazing attitude, or maybe it was adolescent denial. He never let having cancer dictate his life.
So when his final Bone Marrow Aspiration (BMA) was negative by pathology but positive by Fluorescence In Situ Hybridization (FISH) for malignant cells I thought well, this is just a bump in the road. The decision was made to give him another round of high dose chemotherapy to destroy those few cells that just a few years ago would not even have been detected. And so it went, or so I thought.
James sailed through his last round of chemotherapy with his usual ease and laid-back manner. After receiving that chemo, James went to visit some friends and to see a college football game at a rival university. While there, James developed a fever and was admitted to another hospital for intravenous (IV) antibiotics. After that out of state admission, I saw him the following week.
When he walked through the door, I knew something was wrong. His weight loss was evident even without a scale. His color was off. He looked sicker than I had ever seen him. My heart sank into my stomach. I knew instantly this was not just an infection! My next thought was, “There was no way that his mother had seen him like this,” which put me in the awkward situation of wanting to contact his parents but not being able to do so without his permission.
I asked him if he had spoken to his parents since coming home from his recent trip. His parents, it turns out, were on a cruise; they would be home in two days. He did not want to call them. That was so like James. He didn’t want to overreact or worry his mother.
Then he asked me, “Is there something wrong?” I said no just asking and went immediately to notify the physician about James’ condition. The physician came and spoke with James. Additional tests were ordered. After his physician had spoken with him, James asked me if I thought his cancer was back. I said I was not sure, that we should wait for the test results.
He told me that he was scared and instead of acknowledging his fear, I told him we should wait to see. In my mind, I didn’t want to take away his hope. I was wrestling with my own thoughts and feelings about facing the possibility of James’ death. I remember walking out of his room standing outside his door full of regret, feeling as though I had lied to him. It tore me up. I knew even without tests there was little doubt his cancer was back. Furthermore, I let the opportunity for him to tell me how he felt slip away.
A BMA a few days later demonstrated 90% blasts. James underwent several more rounds of emergent chemo. I continued to be his nurse. Eventually he came to clinic almost daily with his mother. His independence muted. He was admitted to the hospital several times. He now required constant supportive care. It was during one of these visits that I finally got my opportunity to speak to him alone and to rectify my wrong.
I sat on his bed and told him how I was sorry that I had not been completely honest with him. I knew something was wrong long before his BMA results were back. He told me that he knew that I had lied to him. He was hurt because he thought he could trust me, but he understood. I told him I would be straight with him from then on.
He then asked me if I thought he was going to die. I responded that I knew he was going to die, and it hurt me tremendously to tell him that. He cried. It was the first time I had ever seen him cry. When I reached for his hand, he collapsed into my arms like the child he still was. We both cried for the man he would never become.
He told me how scared he was, but ready. I told him it was OK to be scared. It was not fair, and I really had no good answers. Much more was said because I really loved him. I told him that I would never forget him. He told me he forgave me for lying to him. I am so very grateful for the opportunity to help him prepare for his death with the same grace and dignity, endurance and love in with which he had lived.
A few weeks later, James died at home in his own bed. He was alone in his room because that was how he wanted it. He was at peace; a peace which I helped him achieve. I will never forget him or the lesson he taught me about bravery and being honest with patients. I am a better nurse because he was my patient. I am more conscious not to let those moments; those opportunities slip away.
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