Bee was diagnosed in June 2013 with metastatic paraganglioma after brain surgery to remove a 5cm tumor.
After suffering symptoms since she was 16 it was thanks to an inquisitive GP that did not dismiss her complaints of a "sore spot" on her scalp and panic attacks that arrived at this diagnosis. Further testing showed that Bee carried the SDHB gene which is a contributor to hereditary paraganglioma, and much to her dismay so too did her beautiful 4 year old son Jack. After recovering from her surgery and reassessing her life and job commitments (Brydie had spent 17 years serving our country in the Navy), which is forced upon people after such a diagnosis, Bee contacted the Unicorn Foundation to see what she could do.
After first contacting the foundation in August 2013 looking for information on the support group in Adelaide, it was an email at the start of 2014 that put the wheels in motion. It outlined a plan to raise the remaining money needed for the CONTROL NETs trial, as Bee had just received four rounds of PRRT at the Queen Elizabeth Hospital in Adelaide to treat her bone and lung lesions. In it was a succinct plan (true to her navy background) that outlined how much was needed broken down per person and how she was going to acheive it. This was someone we had to meet. The first phone call sealed the deal and we were sold on anything she had to sell. It was not hard to get wrapped up in her enthusiasm, all this from a woman who thought she needed to give back (it was us who wanted to give more to her).
Bee felt she was in the fortunate position and that when her kids (Benji and Jack) were in childcare, in her words "with too much time on my hands" to start working to the goal of raising $225,000. Nothing was too hard for Bee and no task too big. Daily emails, phone calls, texts, the development of fancy excel spreadsheets and help with the redevelopment of the UF website showed what a capable and smart woman she was. The bond between myself and Bee was cemented as we forgot her illness and concentrated on each new task. We travelled to Sydney in 2015 to scope venues for the Sydney cocktail party and pulled off an incredible event raising close to $70,000. Next was the inaugural Adelaide Gala Dinner only 2 months later, in Bee's home town. It was an amazing night, planned to precision, and the first that John and I felt like we were guests. That was always Bee's plan and with the help of the passionate organising committee the event was a huge success and everything Bee had dreamed.
With the high of pulling off such spectacular events came the low that Bee's body could just not keep up the momentum with which she had been pushing it. It was after the Adelaide event that we could no longer ignore the fact that Bee had to start taking better care of her health and had to slow down for the sake of herself, her beautiful Mark and her kids. This did not dampen her drive though and she set herself other tasks, more administration that she could do from home. I was always receiving emails that she had been redesigning this and improving that and I was loving her for it. In her "spare" time she had also been working on an online business with Mark. Nothing could keep this good woman down.
Over the last year Bee suffered knock after knock as the tumors spread and could not be contained by the treatments available. It never diminished her positive outlook even in the midst of extreme pain.
We thank her parents Babs and Brian for giving the world their amazing daughter, we thank Gemma for sharing with us her devoted sister. Mark her loving and ridiculously supportive husband was the good man behind this strong woman, always having her back, and picking her up when she stumbled. Benji and Jack will live with the memory that their mum was so much to so many people.
The inital phase of the CONTROL NETs clinical trail opened in WA, NSW, SA and VIC, with over 27 people currently on that trial. Bee was so proud of this and so she should be.
*Bee's family and friends would like to continue the work that she started and have started a fundraising page, with money donated to be directed towards research. Click here for more details.
