What is DIPG?
There are over 120 different known types of brain cancer. DIPG or 'Diffuse Intrinsic Pontine Glioma' is the most fatal of all these brain cancer types.
DIPG grows in the PONS area of the brainstem making surgery impossible. Currently there are no approved or validated 'data driven' effective treatments or a cure available.
The average survival time from diagnosis for a child remains staggeringly low at just 9-12 months.
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What are the signs and symptoms of DIPG?The signs of a DIPG vary as the pons and surrounding structures (where DIPGs are located) are responsible for a variety of different body functions. Nearly all will be emergency presentations. A child with a DIPG may display: Abnormal alignment of the eyes or/and double vision (diplopia). Weakness of facial muscles or facial asymmetry (one side of the face appearing different from the other). Arm and leg weakness. Unstable balance and co-ordination. Difficulties walking and speaking. Difficulty swallowing/unusual drooling. General tiredness. Changes in normal 'mood', unusually emotional. Read more
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What is the prognosis for DIPGs?Unfortunately, there is NO cure for DIPG at present.
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What are the standard treatments for DIPGThe standard treatment is radiation therapy (considered palliative radiotherapy) given over 3-6 weeks to help manage symptoms, though it is not curative. Surgery to remove the tumour is generally not an option due to the location in critical areas of the brain stem. Steroids like dexamethasone may be given during radiation to reduce swelling and pressure, though they have unpleasant side effects. If hydrocephalus (fluid buildup in the brain) occurs, it can be treated with a shunt to drain the excess fluid or an endoscopic third ventriculostomy procedure. Chemotherapy drugs alone have not been shown effective, though new delivery methods bypassing the blood-brain barrier are being explored in clinical trials. Clinical trials represent one of the few treatment options available, especially for newly diagnosed patients in the UK. These are currently extremely limited. Those who have access to biopsy and tumour profiling may be able to discuss ‘targeted’ options with their oncologist. More clinical trials and self-pay options may be available overseas but have strict eligibility criteria. Read more
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ProgressionAlthough 75-85% of patients experience some symptomatic improvement after radiation therapy, DIPGs almost invariably recur or progress within 6 months from therapy according to published data. Once the tumour begins growing again, it typically does so rapidly, affecting critical brain regions. Any further treatment is generally supportive and aimed at relieving symptoms. Sadly, following tumour progression, the median survival time is alarmingly short, ranging from just 1 to 4.5 months based on reported clinical trials. While the average survival statistics are dire, it's important to remember that every child's journey is different. If your child has been diagnosed with a DIPG, focusing on their wellbeing and quality of life is by far the most important thing.
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Fund Research
At the moment there is no cure and no proven treatments for DIPG. Abbie's Army are committed to raising funds and with support and advice of our Scientific Advisories, commissioning or contributing to high quality and innovative medical research to find a cure for DIPG. With your help, you can give hope to future DIPG families.
You can read more about how we fund research here
17th May is DIPG Awareness Day. Click here to buy a gold ribbon pin from our shop and support the fight for a cure.
Abbie's Story
Our world was shattered on 13th April 2011 when our 6-year-old daughter Abbie was diagnosed with DIPG, a rare, incurable brain tumour. The only treatment was palliative radiation. After her radiation at The Royal Marsden, we took one last family holiday to Dorset before Abbie's painful decline.
My biggest fear was that she would be afraid...as afraid as we, her parents were of losing her. Abbie only ever believed that she would be well again and all she would speak of the whole time would be getting back to school with her friends where she belonged.
We had exactly 5 months to the day from Abbie's original diagnosis, we managed to get her home from our local hospital for one last night of cuddles in familiar surroundings with her family around her and sadly she slipped away in our arms the following morning on September 13th 2011.
In November 2012 'Abbie's Army' the charity formed in her memory and gained their own charity registration with the Charity Commission.
Diffuse Intrinsic Pontine Glioma affects around 40 children a year in the UK...
Has your child just received a DIPG diagnosis?
To be delivered the death sentence that is DIPG for your child is surely the cruellest and most harrowing experience that any parent should have to face. At times the emotional strain can be completely overwhelming. We've been there, fully understand and want to help.
We can help connect you with the right experts quickly, providing the most up-to-date research and evidence-based guidance on treatment options. We can also connect you with other families who understand what you're going through. Sharing symptoms, coping mechanisms, and experiences can be a powerful source of strength.
