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Diffuse Intrinsic Pontine Glioma (also known as DIPG and more recently DMG) is a highly aggressive brain cancer. The tumour is located in the pons (middle) of the brain stem. DIPG's grow amidst the nerves, so it is impossible to surgically remove them.

The brain stem is the main communication centre for sending information from the brain to the body and receiving information from the body to the brain. The brainstem also contains the central part of many of the cranial nerves controlling the movement and sensitivity of the eyes, the face, hearing, steadiness, and taste among other things. It is a very delicate area, that is responsible for many vital life functions such as breathing, heart rate and blood pressure.

40 UK Children will be diagnosed with DIPG each year, that is one child every nine days. DIPG accounts for 80% of all brain tumour deaths in children. They can develop any time, however the median age at diagnosis is 5 to 7 years of age.

Only 10% of children diagnosed with DIPG will survive two years.

Median survival is sadly just nine months.

Symptoms of DIPG can vary but a child with DIPG may experience

• Clumsiness/Wobbliness when walking
• Loss of balance
• Changes in behaviour
• Double vision
• Squinting
• Facial Weakness/Drooping on one side of face
• Weakness of a leg and/or arm
• Slurred speech
• Dribbling
• Tilting of head
• Problems with eye movement
• Unusual sleepiness
• Problems swallowing

 If there is swelling around the tumour, symptoms can include

• Headaches
• Nausea and Vomiting

If the tumour spreads to the spine it can cause

• Back pain
• Difficulty walking
• Problems with bowel and bladder control

 Symptoms are usually present for six months or less at time of diagnosis.

Alfie Bear's Journey support the incredible HeadSmart Campaign through The Brain Tumour Charity. The HeadSmart campaign have reduced the average diagnosis time for childhood brain tumours in the UK down from 13 weeks to 6.5 weeks. You can download symptom cards, a symptom diary and other materials from their website: VISIT HERE

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.