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DIPG…

*Please note before you read this that this is not the type of brain tumour that Eleanor has*

 

Being told your child has cancer is quite possibly the worst news you can ever imagine, right?

Wrong.

With a childhood cancer diagnosis there is always hope, hope of a cure, hope of treatment, hope of a future.

Not with DIPG.

Earlier this year I came across a story of a 9 year old girl in the states called Katherine ‘Katie’. A year ago she was diagnosed with a type of brain tumour called DIPG (Diffuse Intrinsic Pontine Glioma)
This is a malignant tumour located in the pons (middle) of the brain stem and is terminal upon diagnosis. Yes, you did hear that correctly. Terminal.

There is no treatment protocol for this type of brain tumour. Radiotherapy is offered, providing a small amount of respite but the tumour always comes back. Surgery is not an option. These tumours invade diffusely throughout the brain stem, growing between normal nerve cells. Aggressive surgery would cause severe damage to neural structures vital for arm and leg movement, swallowing, breathing and even consciousness.
Katherines parents watched their child waste away over the course of a year until she finally passed away in June, a fraction of the person she was, barely able to communicate in any way.

 

 

Here are some brain tumour statistics:

In 2013 there were 10,624 people diagnosed with a brain tumour.

In 2014 5,223 people died from a brain tumour, that’s 14 people per day!

 Only 14% of people diagnosed with a brain tumour will live for 10 or more years.

Brain tumours kill more adults and children under 40 than any other cancer.

1 in 74 people will be diagnosed with a brain, other CNS (central nervous system) or intracranial tumour during their lifetime

DIPG has a 0% survival rate and a child diagnosed with DIPG may only live a few months.

 

 

Stories like Katie’s absolutely break my heart, but I make myself read them and I make myself try to understand. There simply is not enough knowledge about brain tumours. We’ve almost cracked breast cancer but in 2014, brain tumours received 1.5% (£7.7 million) of the £498 million national spend on research into cancer. At this rate, it could take 100 years to catch up with developments in other diseases.

Last year in the UK an E-petition was started, it’s aim was to increase the funding for research in to brain tumours. Over 100,000 people added their signatures and it was the first E-petition ever debated in Parliament. The debate took place in April this year and hundreds of MP’s attended having spoken to people in their constituencies currently battling or having lost a loved one to a brain tumour. We hope this has shed some light and creates more awareness into such an unknown area. Our main aim and the aim of all parents who lay bare the lives of their children who are fighting such a battle is to raise awareness, one day we may find that miracle cure so that the families of children like Katie can at least have hope.

 

Rest in Peace, Katie x

 
This link to the website set up by Katherine’s parents. Please don’t look at this if you are easily upset or offended. Katherine’s parents are highlighting the devastating effect DIPG has had on their family.
http://katherinethebrave.org/

A Huffington Post article written by Katie’s Aunt.

 

Reality check…

Just when you think you are done, just when you think life can start to take on some normality, chemotherapy reminds you who is boss by punching you in the stomach and running off laughing….

 

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F*** you chemotherapy.

You might take her hair but you’ll never take her smile!

 

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