Due to the location of DIPG, it is currently impossible to operate. Surgery could cause severe damage to structures vital for breathing and heart rate, as well as walking, eye movement, swallowing etc.
Steroids such as Dexamethasone, are usually given upon diagnosis, to help relieve any swelling and pressure around the tumour.
Palliative Radiotherapy is the standard existing treatment for DIPG. The radiation is given just to the area of the tumour and can dramatically improve symptoms. However, this is only temporary. The tumour eventually starts growing again, usually at a much faster and more aggressive rate than before.
Chemotherapy has shown little effect in treating childhood DIPGs so it is unlikely that your child will receive this form of treatment unless it is part of a clinical trial.
Given the lack of treatments available to DIPG patients here in the UK, you may want to look into active clinical trials available in other countries that your child may be eligable for. Please discuss this with your childs medical team.
You can find more about clinical trials here; Clinical Trials (dipgregistry.org)
You can also get a free brain tumour information pack from The Brain Tumour Charity which has been designed to help you through this difficult time, to guide you through the healthcare system, answer your questions, and reassure you that you’re not alone so that you feel confident when discussing treatment and care options with your medical team. You can get yours here.
The Brain Tumour Charity have a range of animations designed to help explain brain tumours. There are three characters, Jake, Charlie and Lily who cover a range of topics including scans, treatments etc. Animations can be found here.