Joey will celebrate his sixth birthday in a few weeks. He also has a brain tumor. Technically, he has a high grade glioma, sometimes called an astrocytoma because of starlike branches. Terms such as progressive or high grade carry a positive valence in many contexts, but not in medicine. Joey's tumor, embedded deep in his brain stem, has grown aggressively and has not slowed down despite maximum safe doses of chemotherapy and targeted radiation. Because the brain stem functions as the relay center for signals back and forth to other parts of the body, no surgical solutions exist.
The diagnosis came quite literally by accident. While taking down the family's Christmas tree and horsing around with his siblings, a ladder fell on Joey's head. He did not lose consciousness, but his parents drove him to the local emergency room for a quick checkup. During the examination a doctor noticed symptoms of the more serious diagnosis. Those events occurred just eight weeks ago. He has gradually developed right sided hemiparesis (muscle weakness), esotropia (his right eye turning toward his nose) and has lost hearing in his right ear.
A message of togetherness
Joey's parents want to take him home. They live nearly 100 miles from the hospital and have begun to plan for palliative care in the community. They have come to my office today with a painful request. I have met with Joey several times in the past month to help him cope with depression regarding the progression of his illness. He knows that he has a brain tumor and that the medical team has tried to shrink it with drugs and radiation.
He has told me, "I feel fine and want to go home. They told me I'd be here a few weeks, but they keep making it a higher week." His parents believe they should now talk with him about dying. His father explained, "We have to say something to him before he comes home. I'm terrified that he's going to wake up some night at home, and ask me if he's dying. I don't know what to say."
The parents' distress fills the room. No guidelines exist for this clinical situation. I suggest they tell me about their beliefs and what they hope to communicate to Joey. They want him to know that they love him, and feel terribly sad at the thought of losing him. They report attending church regularly, believe Joey will go to heaven, and feel confident that some day the family will reunite there. They hope that Joey, who has attended Sunday school, will draw strength from their message. I acknowledge the importance of their faith, but also note that children Joey's age worry about separation and pain. I suggest that we also reassure him that he will not be left alone, and that he will have medication available to ease any headaches or other pain.
The time has come to have the most difficult sort of childhood conversation one can imagine. Joey's neurologist explains that all of the medicine and radiation could not stop the tumor from growing. We explain that he can go home, where his parents and visiting nurses will take good care of him, making sure that he gets medication if any part of him hurts. We explain that when the tumor gets too big his body will stop working and he will die. His father explains that, when he dies, he will go to heaven to live with God and that some day the whole family will be together again.
A pause of several seconds, an eternity, follows and Joey says, "I don't know God." His mother jumps in and asks Joey to, "Remember Aunty Helen who died last year? She'll take care of you in heaven until the rest of the family gets there." Everyone in the room has moist eyes, as we provide additional supportive comments.
Supporting a source of strength
Later in the day I stop by Joey's hospital room, where he sits in bed watching television. I comment, "We talked about some hard things this morning."
Joey replies, "I hate Aunty Helen!"
I know that I must respond on two levels, both supporting the belief system from which the family draws strength (even if not my own), and addressing the underlying emotions. I tell Joey, "Lots of boys and girls have died and gone to heaven, so you won't have to hang out with Aunty Helen. But I bet you're upset about dying too."
We started a conversation about how all of us, the medical team, his family and me, feel angry and sad--angry that we could not fight the tumor, and sad because we love him and will miss him very much. I reassure him that he can talk about these feelings with all the people who care about him.