A Cure For Freyja - A Mothers' Story
About A Cure For Freyja - A Mothers' Story
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A Cure For Freyja - A Mothers' Story Description
It was 23rd December 2016 and my daughters: Brynn 9, Inge 7 and Freyja 5 had just finished a fun filled day of horse riding. Exhausted from the days’ activities of feeding, grooming and riding horses, the girls looked forward to their nightly bath and bedtime routine. With lots of giggles and chatter about the day, whilst washing Freyja's hair and listening to her excited talk about the horses, my focus shifted slightly as I found what seemed like a hard lump on Freyja’s neck which I had not felt or seen before.
After many tests and scans, in January 2017 I received devastating news that my little Freyja has cancer. This cancer is so rare, it took a team of International Specialists supporting the Sydney Children’s Hospital to identify.
The new diagnosis is Cutaneous Clear Cell Sarcoma, formerly known as a type of melanoma. It’s aggressive, it’s location makes it un-operable, and up until recently it was thought to be incurable.
So, how do you tell your 5 year old and her siblings she has cancer? How do you cope when you’re told she may not be around this Christmas? You fight to find a cure….
The prognosis of Cutaneous Clear Cell Sarcoma is guarded, mainly because the disease is difficult to catch early and is prone to relapse and spread long after initial diagnosis. Typically patients with Stage 4 Cutaneous Clear Cell Sarcoma have not lived beyond 12 months from diagnosis. As Freyja was first diagnosed with cancer in January, I may only have 6 months to save her life.
Freyja is currently undergoing a new dual drug Immunotherapy trial at Sydney Children’s Hospital, which has slowed the disease. The last protocol is due within weeks and a decision has to be made by the beginning of July as to what happens next. Proton Therapy has been suggested by Sarcoma Experts in both Germany and the US as her only option beyond the current trial.