Sonja & Heike's experience
What's it like to live with a rare blood disease? Four stories about being ill, about fighting, caring, hoping and getting better. About how something so serious can also lead to something beautiful.
Heike Smit and Sonja van Rooij are aware that it's Grandma's birthday today. They also know that one of their little patients will be attending a new class. And they understand precisely how a child would prefer to get an injection and what their parents think is important. As pediatric nurses at Flevo Hospital, they know their long-term patients better than anyone else. They take the time to build a relationship with children like Jordi and their parents and do everything possible to make the hospital a pleasant place.
"Unpleasant things only happen in the treatment room. This way, the rest of the pediatric ward feels safe," says Heike. "We tell the children honestly what's going to happen, so they can avoid fear and trauma. We also tell them they're allowed to be sad."
Jordi says he doesn't remember much from the time he was ill. But Heike and Sonja note that's quite common. "Children usually forget what has happened. They only know about it from the stories and the photos," explains Heike. According to Sonja, this means that, as nurses, they have done their job well.
Heike and Sonja have been working at Flevo Hospital for many years. They attend on fixed days and have regular patients, which is why they know the children and their parents so well. Jordi has been a patient at the hospital for some time. He was on the pediatric ward because of beta thalassemia major, a rare blood disorder. While waiting for a stem cell transplant at a university hospital, he had regular blood tests and blood transfusions. Once the transplant was done, Jordi went back to Flevo Hospital for aftercare.
During treatment, a child and his or her parents are accompanied by an entire medical team. The hospital staff also take the time to get to know the child’s siblings and ask about school for example.
They organize as many fun things as possible for the children to do. Heike says, “On the last day of treatment, the children are allowed to choose a fun activity, such as baking pizzas or cupcakes, so we can have a little party!”
In their work at Flevo Hospital, Sonja and Heike also meet people who no longer have regular treatment options for their disease or condition. myTomorrows provides insight into medicines in development across the world. Contact our medical team if you have any questions about treatments in development, either in your own country or abroad.
This article was made possible by Flevo Hospital in Almere, the Netherlands.
myTomorrows helps patients who have exhausted their regular treatment options. There may be a suitable treatment option that is in development. Read more and make an appointment with our medical team.