In the car I wonder what he wants to discuss with me. He doesn't tell his parents much, he lets tests and results come over him resignedly. Then quickly go back to the order of the day: go to school and play football. Although he notices that everything is becoming more and more difficult for him. Cycling to school doesn't work well anymore, the uneven grass causes him to trip too often during football and a school day is so full of stimuli that he first has to sleep on the couch for half an hour at home in the afternoon.

I see him for the third time this month. And every time I'm shocked by the speed with which his body lets him down. Step by step, cancer takes away pieces of his carefree life. The nasty side effects of the dexamethasone add to that. He is getting heavier by the day, which makes it even more difficult for him to control his body. And his cheerful, mischievous appearance changes into a flat, expressionless facial expression. But I now know that this is just the outside. Inside he is still that lively boy, full of dreams about the future.

I try to mask my shock and greet him warmly. Together with his mother we look for a quiet place in the school and when I ask what he wants to discuss with me, the high word comes out. The CITO Final Test is coming. He says he wants to participate so badly, but is so afraid... afraid that he won't be able to keep up with taking the test, that he will screw it up completely and then not get the pre-university education advice he hopes for.

I always have to first let it sink in what is behind such a concern. To me, the CITO final test is a monstrosity, a measurement that does not do justice to children's development and is a poor predictor of children's growth opportunities. In my head, the first reaction to his question is: fascinate with that CITO, not important now. But it's not about me. For him, the CITO final test is a moment to show what he has to offer and an admission ticket to the school he so desperately wants to go to. And with that he confirms for me what I have already learned from others: that the development of children and young people does not come to a standstill when life expectancy is limited. Development continues, until the last day! And that requires us as adults to join in. The future is gone only when life stops. Not a moment before.

And now he is asking for help, to clear the way to develop further. And I feel a huge urge to do something for him.

Making the test turns out to be easy to adapt: he can make the test in smaller pieces and choose the times when he wants to work on it. And the teacher reassures him: he will receive a VWO recommendation anyway, regardless of the result. So, two hurdles taken. Now the biggest one yet: making sure the target secondary school is willing to accept.

His parents want... can't take that step now. I understand. They live day by day and with their enormous fear that he will not be there at all when the next school year starts. But he needs certainty about his future, fully aware that he may not make it.

Children who know they will die early live on two tracks: the track of hopes, dreams and plans for the future and the track of cruel reality. They need both to survive. So we agree that I will contact the new school and ask them to take him on, despite his poor prognosis. It takes a lot of tact and attention, but it works. How happy that makes him, winning the state lottery is nothing.

In the weeks that follow, his energy visibly decreases and he becomes more and more a prisoner in his own body. The loss of his speech hurts him the most. His frustration at this he can only show with silent tears on his unmoving, flat face.

But he still goes to school every day, sometimes for a few hours, sometimes just half an hour. But he will and he will. And so his parents bring him with love and the class welcomes him with open arms, every day. He enjoys all those moments, which always make him realize that he is more than his illness, and which do not leave him powerless to wait for the inevitable end.

In the week before the final musical he dies, in peace at home. The day before he was still at school. He would have loved to say goodbye to his class and his school together, but just before the finish line his illness caught up with him.

Looking back, I feel how his connection to school was like a lifeline to him. That line not only kept him upright during his illness, but was so much more. He felt part of a group (a classmate and not just a patient), a boy with qualities and grew from everything he still could, until the last day. And no bucket list can compete with that.