“A what ?!” This is usually the response I get when explaining what Nienke is getting. Not a strange response at all because in the Netherlands it is not a well known treatment at all. Until now only used in adults with a spinal cord injury or ALS. And then only 11 times. All successful by the way.

Nienke has been in the hospital every night since December 20, 2019. Occasionally a whole day due to treatments or testing and in between unfortunately also a few weeks full-time because she got really ill. There have been days we were afraid that we would lose her.

"How many more nights do I have to sleep in the hospital, Mommy?" A question that I have expected a hundred times but have not heard once. In a way I'm happy about that because then I don't have to answer that tough question, but it shows that Nienke is very aware of the uncertainty of everything that's going on. With her surgery coming up real soon I made a countdown calendar for her. This way she has an overview of what is going on and can see for herself how long it will take until she goes to Groningen and when her surgery is planned. I deliberately write "planned". Her operation has already been postponed three times. The first time was planned in October 2019. Now, 7 months later and she still hasn't had surgery. I find myself struggling to trust that it will really happen. But now, to stay positive, I have started counting down the nights along with Nienke .... another 9 nights and then the big day ....... I hope.