As far as my son knows, there was a dragon in his head.
This dragon was big and scary and made him feel sick.
But as far as my son knows, we stomped that dragon out.
The idea of Xavier's cancerous tumour being a dragon in his head came from a movie that had been given to me by another mom of childhood cancer. Paul and The Dragon is a powerful 20-minute video of a young boy with cancer. Although it is generic (not about brain tumours), and there are no words, it is incredibly telling. For any family who has been through a similar experience, you will instantly connect with this boy and his family.
And for my kids, who are very young and don't exactly understand medical terminology, the story is easy to understand and has provided a great foundation for how to talk to them about Xavier's journey with cancer.
The movie was so popular among my kids that it became part of our regular Friday night movie rotation. My son even requested it while he was in the hospital again in June.
It has now become a trigger for me... I know he is worrying or feeling some strong emotion connected to his traumatic experience when he asks to watch Paul and The Dragon. It's his way of opening the dialogue between us and an opportunity for me to calm his fears.
My son doesn't understand what incurable means. And to him, the dragon in his head is gone... for now. We explained to him that doctors needed to go in and take the dragon out. When surgery did not go as well as expected (only part of the tumour could safely be removed) we told him they got most of the dragon except his tail. During radiation, we used the dragon again. An special invisible beam of light was going to be shone into his head and break the dragon's tail up into tiny little pieces so it couldn't bother him.
These explanations seemed to satisfy his inquiring mind and made it not so scary for myself as well. He knows the dragon could come back. But we don't talk about that. Right now, we tell him we stomped on that dragon!