A month ago a very old friend of mine lost her 18-year-old daughter, Isabelle, to EHE (epithelioid hemangioendothelioma) after a long and very brave fight. EHE is little-known, rare and vastly underfunded form of cancer, and my friend and her family are now determined to raise both awareness and funds to perhaps help prevent others from suffering a similar tragedy. So this is for Claire-Anne, OJ and Sebastian; in memory of your beautiful daughter and twin sister, Isabelle.
This is their story:
As some of you know, 12 months ago our world was blown apart when our 17 year old daughter Isabelle, following two years of increasing neck pain, was diagnosed with an extremely rare cancer epithelioid hemangioendothelioma (EHE for short). Instead of enjoying friendships, worrying about end of school exams and planning her future life after school, she was thrust into a world of hospitals, IV drips, pain and fear.
In March 2017 she underwent major surgery to her neck and spine. From May-July she received radiation and proton treatment which removed the cancer but left her virtually unable to swallow. In August she started having agonising chest pain, only to then be told the cancer was now in her left lung. As a result in September she started receiving aggressive chemo, which led her to spend weeks in hospital due to the side effects and numerous complications. In short, to quote Isabelle, ‘life sucks’.
EHE is a rare vascular tumour that arises from the lining of blood vessels. It can appear almost anywhere in the body, but common sites include the liver, lungs, and bones. The cause of EHE is presently unknown, and no proven treatments exist. EHE tumours can behave differently from one patient to the next, with some being stable for years while others progress quickly. The cancer often metastases throughout the body and possesses the ability to transform into an extremely aggressive state with little or no warning. In short, EHE is an unpredictable disease.
The EHE Rare Cancer Charity is fighting back by funding research into finding a cure and provides invaluable support and information to patients and families like us, whose lives are affected by this devastating disease. Sadly however, very rare cancer research gets no funding from governments, none from the pharmaceutical companies, and almost zero even from the big cancer charities. Companies and foundations will help but only if we continue to show that we are raising funds too.
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Thank you Claire-Anne, OJ and Sebastian.
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