The overwhelming nature of the DIPG (diffuse intrinsic pontine glioma) sickness and the fact that it can sometimes suddenly go very fast, leaves many parents feeling as if they are running to keep up with the situation. We hope that by sharing many experiences we can help other parents to cope better.
This Care Book contains experiences and tips from parents of children with a pontine glioma that are connected to ‘Stichting Semmy’. The experiences of these parents was gathered through questionnaires.
The separate subjects can also be viewed via the menu bar:
- Tips for daily life after diagnosis and starting treatment – http://www.pontineglioma.com/tips-daily-life/
- General physical complaints – http://www.pontineglioma.com/general-physical-complaints/
- Care givers and support – http://www.pontineglioma.com/care-givers/
- Home care services – http://www.pontineglioma.com/home-care-services/
- Communication – http://www.pontineglioma.com/communication/
- Financial assistance – http://www.pontineglioma.com/financial-assistance/
- The final stages – http://www.pontineglioma.com/the-final-stages/
- Tumour donation – http://www.pontineglioma.com/tumour-donation/
The Care Book was made by:
Nicole Bakker (Semmy’s mother)
Eveline Schell-Feith (Maarten’s mother and paediatrician)
Sanne Melman (nurse in the 9B VU, Child Cancer department)