Connie Whitby-Supporting her boys, Daniel & Thomas

In September 2019, at 44 years of age, my sister Connie was diagnosed with Intrahepatic Cholangiocarcinoma - a rare and incurable cancer that develops in the cells within the bile ducts (the tubes that go from your liver to the small intestine).

To give you an insight about my sister, she has two young boys (aged 16 and 12) that she is the sole surviving parent of. Tragically, Connie lost her husband Steven, the father to their beautiful boys, in 2012. Connie hasn’t been dealt the best of cards, but every hand dealt, she has always come through and never given up. Connie is an inspiration, continuing to be a pillar of strength for her boys through all the ups and downs. Including her most recent challenge over the last 2 years navigating her recovery of this insidious disease. She has never given up. Like all kids, Daniel and Thomas need their mum to continue to guide and support them through life. They are her “why”, her reason for this journey.

When Connie was initially diagnosed, she started on a chemotherapy combination, for 5 months. Chemo was only ever really to slow down the growth. As time has gone by, Connie has learnt more about this disease and other modes of treatment and healing. In December 2019, she attended a 5 day Outsmart Cancer retreat run by the Gawler Foundation in the Yarra Valley, Victoria.

After the 5 months of Chemo, Connie was on a “break” from treatment. In June 2020, whilst on the “break”, an opportunity arose for a trial at Peter MacCallum, for a targeted therapy. This is a treatment that blocks the pathway to the predominant mutated gene. This started really well with tumour markers reducing rapidly and Connie was tolerating the drug equally well. However, over time, this became toxic within her body and things drastically changed. Connie was very unwell for a few months, she lost a lot of weight, had no energy and her bloods were all over the place. At this point she was so unwell, she was unable to look after herself or her boys, so our mum lived with them to take care of them all during her recovery.

Over time Connie regained some strength and has been fortunate enough to gain access to a drug that is used for Melanoma patients sharing the same gene mutation. She is currently on these drugs as they have stabilised the disease, but when her body becomes resistant, the oncologists plan is to return to chemotherapy.

Knowing my sister, she is not one to give up and her aim has always been to get to NED “No Evidence of Disease” status. Connie has been active in researching new treatments that will give her a great chance at overcoming this disease. With doctors reminding her that this is “incurable”, Connie is of a different opinion and believes that if her body created it, her body can heal from it – just as we do from a cut or graze.

For the next stage of her journey, Connie is engaging with a number of doctors, specialists and therapists to assist with the continued use of conventional medicine, combined with alternative/natural therapies. She has started a new holistic and intense treatment plan, including;

Naturally all these methods come with exorbitant costs as they are mostly not covered by health insurance or Medicare. Approximate expenses in the next 6 months are;

Medications & Supplements $12,000

IV Infusions $50,000

Medical professionals/appointments $5,000

Testing $6,000

Radiation (out of pocket) $5,000

Dental removals & Replacement $20,000

Totalling approximately $98,000

Connie has had to reduce her workload by about 90% and like everyone still has regular household bills.

I understand that it’s tough times for a lot of people out there right now – financially, mentally and emotionally. For those that are not in a position to help financially, but would like to help, you can continue to support her in many other ways, as many of you already do. Helping out with the boys, driving, cooking and picking up groceries when she is unable to has been a huge support within itself.

Anyone that knows Connie, will know this is not a comfortable ask - your contribution whatever it might be, will be most helpful and appreciated as she continues on this journey. For Connie, it means quality of life without the worry of the high expenses that she will endure and peace of mind.

Let’s all get behind Connie to help her thrive and kick this disease in the BUTT!