A Big Pot of Colored Sweets

Several years ago, when beginning my specialization in pediatric oncology and palliative care, I saw JS, a nine-year-old girl, at the pediatric oncology and palliative care clinic. She had a relapsed and progressing rhabdomyosarcoma of the orbita and had undergone chemotherapy, radiotherapy, and experimental therapy with no success. In the following months I saw her weekly and got to know her and her mother. The tumor mass grew substantially, displacing the left eye, bursting the temporomandibular joint, forcing the mouth open and ultimately growing out of the mouth. Challenges to palliative care included a harsh fetor ex ore and a bleeding tendency of the oral tumor parts. I noticed sadly, as did JS and her mother, that when she walked into the outpatient department everyone suddenly had very important things to do—elsewhere.

The girl's main wish was to go to school as long as possible and see her friends. So I visited the primary school together with JS and her mother. We taught the teachers and the classmates about the disease in a suitable way. We explained to her classmates that JS would have to die sometime soon. One girl said it wouldn't matter because she would stay her best friend anyway. The children in her class were not horrified by the appearance at all and JS was able to attend school up until three weeks before her death. She died at home peacefully accompanied by our pediatric palliative care team.

To me, the picture of the girl with the tumor in her face, with her mouth wide open and the tumor growing out, is among the most horrible things I have ever seen. The girl lived in a picturesque little town in Bavaria, surrounded by an old town wall. Every time we visited the girl we drove through an old city gate. Over time I forgot about that old city gate, just as the memory of JS faded in my mind.

Several years later, working in pediatric palliative care, we took care of another patient close to where JS lived. To visit this patient we had to drive through the same old city gate that took us to JS's home years before. This coincidence caused the picture of JS as I described her above to pop into my mind every time I drove through the old city gate. After some weeks I decided to contact the girl's mother.

We met at her home for coffee, and she set a big pot of colored sweets on the table. We talked for a long while, even laughing about old stories of her daughter. She told me that, after all, JS's classmates indeed never had a problem with JS's appearance. Sitting in her home, I saw a woman living a normal life with only good memories of her daughter. When I left that day I felt relieved and as if something had changed. The following weeks I realized the picture in my mind had transformed as I drove through the city gate. Now I had the picture of the mother, laughing, telling stories, drinking coffee and offering a big pot of colored sweets.

Professionals in palliative care can have pictures of the patients they cared for placed all over town. Sometimes those images can be disturbing, making their passage through the cities difficult. In summary, this little example is about a transformational event that I experienced myself. It was made possible by a very simple intervention, the decision to call the mother and meet her, even years later. In addition, it is an example of how an emotional situation assumed to be processed can reappear and require more work. This special case resulted in a good solution for me. The image of the transformed city gate stays with me. For palliative care professionals, but also for other health care professionals, this story is offered as encouragement to actively seek ways to transform the pictures that may accumulate on the way through town.