Written by VONK – Semmy research team
When your child is in the later phases of this sickness, the research team will ask you to consider tumour donation. Of course, we understand how difficult it will be to even think about this, but, since it is so incredibly important, we dare to still ask you about it. We have asked our researchers to explain why tumour donation is so important. We have also asked two couples, who did donate the tumour from their child for research, to write about their experience.
We want you to be able to take a considered decision following your heart and mind. For following your mind, this information is essential. For following your heart, it is not needed. Whatever you decide is ok, it is and remains your decision.
Why is it important?
It is only by increasing our biological knowledge about this type of tumour that we can ever develop successful treatment. For this we need tumour tissue. That requires a post-mortem to be carried out. The VUmc is specialised in research into brain stem tumours. Post mortems of children with brain stem tumours plays an important part in this. The post mortem gives confirmation of the diagnosis and also gives the opportunity for medical research. Due to the use of tumour tissue for medical research, parents and children over the age of 12, must give written permission for a post mortem. The Medical Ethical Committee of the VUmc gave formal approval for medical research into deceased children with brain stem tumours in November 2009.
The goal of the post mortem analysis is to remove brain tissue, including the tumour cells. Then the characteristics of the tumour cells will be carefully analysed in our laboratory. We will also do research into the effectiveness of different drugs, aimed at developing future, new treatment possibilities for children with a pontine glioma.