Phyllodes Sisters

During my journey I have spoken of my ‘Phyllodes Sisters’ who have been there for me in so many ways.  The majority of these ladies I met online via the Facebook group ‘Phyllodes Support Group’ and some I have, as you know, had the pleasure to meet at the Young Survival Coalition (C4YW) Conference in the US.  I have mentioned a few by name but mostly by reference to the wonderful team who mean so much to me.

Today we hurt.  Today our beautiful Jolene lost her battle with cancer.  Jolene was a shining example of how to live but also an example of how to die.  Diagnosed first at the age of 17 with her first Phyllodes tumour, then with metastases to other parts of her body and new rare and also common cancers too including chrondosarcoma and DCIS since her first diagnosis.  She’s had surgeries, chemotherapy and radiotherapy.  After two major surgeries earlier this year to remove tumours from her jaw, the jawbone being replaced with bone from her thigh, first one side and then a recurrence on the other side of her jaw a few weeks later.  She thought she had beaten cancer once more.

After experiencing headaches she fought to have scans on her brain and they discovered yet another fast growing rare tumour behind her eye.   Jolene made the decision at the age of 25 not to have any further surgeries or treatment.  She decided that her quality of life was more important, even if just for a short time, than to undergo surgery that they couldn’t guarantee would work, nor would possibly leave her blind or disabled.  The medics gave her 3 months maximum to live.

Hahaha (and as I type that I can hear Jolene’s laughter)… Jolene wasn’t going to take that lying down and steeled herself to have the best ever time that she could, in the time left to her.  I saw daily posts of adventures.  Jolene spoke of a closeness that was evolving each day with family and friends and an amazing mother-daughter bond and one with her grandmother too.  She amazed us all at her life and laughter and also her compassion for others whilst she faced this every day.  And we held her hand on the days it seemed too much or when the pain was unbearable.

In the early hours of today she went to sleep.  On her terms and only when she was ready to go.  She was surrounded by her family and friends and left peacefully.

For her friends and family there is now a huge gaping hole where Jolene once lived in our lives.  I personally cannot believe I won’t hear her laugh anymore or read about the mischief she creates on this earth.  However we’re all absolutely sure that the angels are partying tonight.. and if they are at first reluctant, Jolene will have them dancing and giggling in no time.

Jolene VonMillanich – 19 November 1985-30 October 2011 – In the Arms of the Angels by Sarah McLaughlin

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