by Kylie Cilek
My name is Kylie and I’m a 36-year-old mother to a beautiful 4-year-old girl named Isla and married to an amazingly supportive and caring man, Tanyu, who I’ve shared life with for the last 13 years. I’m currently 2 years into my cancer battle with stage 4 metastatic tongue/ head and neck cancer. Thank you for taking the time to read my story.
Only months after Tanyu and I were married in April 2012, I was diagnosed with cancer (completely unrelated to this cancer I’m fighting now). I went through radiation and chemotherapy for 3 months and fortunately beat that cancer which I was so lucky to do.
The repercussions of the treatment, however, meant I could not carry my own baby. I spent months during treatment and post researching surrogacy and eventually in November 2014 our miracle baby Isla was born with the help of a very special surrogate.
As if the stress of the cancer and surrogacy wasn’t enough, at 30 weeks gestation we found out Isla may not make it as she had a major heart defect. Our beautiful strong baby defied the odds, kept growing and survived another 7 weeks in vitro. She was born requiring Open Heart surgery to close 3 holes and fix a value problem. Had she not had the surgery she would not be here today. We are ever so grateful Isla survived, was in the very best care and her heart is now (almost) completely fixed.
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The worry over those few years together with the effects of radiation to my bowel and my Crohn’s disease, caused my bowel to disintegrate in July 2015. I was rushed in for emergency bowel surgery which left me with a permanent ileostomy bag. It had taken some time to get used to this major alteration to my body, but once it healed I was – for a short period at least, healthy again 🙂
I was so very fortunate to have had almost 18 months feeling healthy and enjoying time with my family before I was then diagnosed with this terrible cancer.
For my stage 4 metastatic tongue/ head and neck cancer, to date, I’ve had 5 surgeries to my mouth and neck, 60 sessions of daily Radiation (in 2 rounds) 12 weeks of Chemotherapy, 10 weeks of Immunotherapy plus 13 weeks of a different Chemotherapy which I’m currently still on.
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This cancer has been relentless. No matter how hard I try to fight, it just keeps reoccurring. The last big surgery in July 2018 I had most of my tongue cut out as well as a large area of gum, which was then recreated with part of my hip tissue. After months of swelling and with bad nerve damage I was able to start to talk, eat teeny tiny amounts and carefully drink again, hoping that the cancer had all been removed and I was on the road to recovery.
Sadly it was short lived. 3 months later a big tumour very quickly formed in my throat protruding from the front of my neck. My surgeon did not want to operate because of the high risk with location and difficulties healing after having had so much radiation. This tumour left me again unable to talk, eat, drink and swallow properly. I dropped down to 35kg so I have a ‘RIG’ feeding tube inserted into my stomach for nutrients and water. I was put on a chemotherapy which doctors hoped would shrink the tumour and give me more time. If not it would continue to grow with which very short prognosis. Fortunately, the tumour has been responding which has given me back some critical time with my family over these past few months but unfortunately, it’s only temporary. The chemotherapy will not work forever and my body will become resistant to it.
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There is hope with new immunotherapy treatments available which aren’t on the PBS (for my particular cancer anyway!). As you may have heard about on the news, self-funding these treatments is incredibly expensive. If the treatment is not successful, as an alternative, I will look into clinical trials/treatment options overseas. This process would not only be challenging on my family being away from home for so long to receive treatment, but the cost would be very difficult to say the least.
My daughter Isla is only 4 years old. She needs her mummy. Causing her so much pain and the thought of her having to grow up from such a young age without her mother is devastatingly hard to come to terms with. Tanyu and I fought so hard to bring her into the world and now I’m afraid I won’t get to see her grow up. I’m heartbroken that she probably won’t remember much about me. I need as much time as I can with her – and continue to pray for a miracle that there will be more treatments in the future to make it possible for me to keep fighting.
This cancer has shattered our future dreams as a family. All we can do right now is live in hope that the next treatment will work and buy me more time with my family and friends.
Life is precious and incredibly fragile. There is not a single moment I take for granted. I have so much fight left in me – as I have a lot to fight for. I am just hoping for a miracle and more time. Time is everything.
Over the past 6 years, I’ve held many fundraisers to benefit organisations who are close to my heart. I have never asked for donations to help us get through my previous health battles however this time, while it pains me to do so, I’m hoping to raise money to help with my future cancer treatment and ongoing medical bills that have become much harder since I’ve been unable to work. If you feel you can donate, my Go Fund Me link is: https://au.gofundme.com/helpwithkyliesfuturecancertreatment
Thank you for your support xxx
