Zoie, Acute Lymphoblastic Leukaemia, by Analia Paino

Zoie Scar Stories

My name is Zoie Moore (yes with an i) and I am a 19-year-old girl, living in Sydney. 

A date I will never forget is the 29th of December, 2016 when I was diagnosed with Acute Lymphoblastic Leukaemia. What a fantastic way to start 2017 (I hope you can sense my sarcasm), my final year of school and the year of my 18th birthday. When I was diagnosed I was struck by thoughts of death and I honestly didn’t know what to expect that year.  It was like being thrown into the deep end of the pool while not knowing how to swim. I now understand that everyone’s experience with cancer, even those with the same diagnosis is completely different. Things were extremely difficult from the beginning and rapidly got worse as time went by.

Due to a low platelet count and a little bit of bad luck the insertion of my portacath went horribly wrong. It caused an enormous internal bleed on the right side of my torso. A hematoma formed, playing the role of a fresh Petri Dish for lurking nasties to play in. A common yeast found on human skin found its way inside me and began to produce spores, growing in the hematoma. The fungus rapidly spread throughout my body causing serious infections, which lead to sepsis and multiple organ failures, sending me to ICU. 

I can't remember my time in ICU but I do know I spent most of my time there hooked up to dialysis and many other medical instruments that were keeping my body alive. It wasn’t just the cancer trying to kill me, but the infection as well. The original portacath was deemed unusable so it was carefully removed and replaced with a PIC line. This PIC line didn’t last very long before it contracted an infection as well and was replaced by another. Various types of internal lines were introduced and I had most of them in me at one time or another - a vascath, arterial line, catheter, 2 lung drains and finally a Hickman. Having all these alien objects inside my body made me feel like I was a machine. My life was in the hands of plastic tubes and constantly beeping instruments.

My life was in the hands of plastic tubes and constantly beeping instruments.

After my stint in ICU I was weak and very unstable but I was alive. My 18th birthday was celebrated on the oncology ward and while for most teenagers this milestone is like a golden ticket into adulthood and freedom, for me it was like my body had pressed the ‘stop’ button. It turned what was supposed to be one of the happiest days of my life into a day I can't even remember. 

Zoie Scar Stories

I was unable to continue chemo as the chemotherapy drugs would cause my body to reject the medicines that were making me better. Due to being bedridden for so long and unable to move very much I completely lost mobility. I couldn’t even sit up in bed. I needed hours of vigorous physiotherapy every day just to help me do the simplest things such as lift my head from a pillow. I definitely had more bad days than good however slowly but surely I started to move a little more as the weeks passed. 

After 275 days in hospital I was finally able to go home for one afternoon.

Once I had more strength I restarted chemo on a new protocol. I started on Methotrexate, on which I encountered the usual side effects such as vomiting and fatigue. I actually thought this was the end of my bad luck until the severe side effects began. The chemo dosage was too strong for my body and the toxicity caused me to have two mini strokes known as TIA’s. During both I lost complete control of the right side of my body for 24 hours. On top of the strokes during the last rounds of Methotrexate I got severe mucositis. It was so bad that my entire tongue swelled up as one big ulcer and I was vomiting blood. I lost the entire inner layer of my mouth as it was stripped off in blood clots. I still bare the scars all over my tongue as a reminder. This run of bad luck pushed me back down physically and emotionally and I was once more at the bottom fighting my way back up. After 275 days in hospital I was finally able to go home for one afternoon. I remember having to be wheeled into my kitchen and just taking in the fact that I was surrounded by normal objects. 

The chemicals within the drug caused a reaction, burning my skin from the inside out, leaving me with 3rd degree burns all over my body

After some rehabilitation I started chemo again. I developed a sensitivity to yet another chemotherapy drug resulting in my muscles being eaten away and I lost my ability to walk again. The last chemo protocol consisted of injections and tablets and unfortunately the tablets did not agree with me. The chemicals within the drug caused a reaction, burning my skin from the inside out, leaving me with 3rd degree burns all over my body which eventually bubbled and blistered. In hospital once again I was finding it difficult to hold onto hope.

With every obstacle that I was confronted with I was always fighting. My time wasn’t over and I threw myself into survival mode every time things got hard. Whilst battles were won scars were left. In the beginning the scars I began to gather made me uncomfortable as they were unfamiliar and definitely unwanted but as time has gone by I have learnt to love them for reminding me, “I have overcome this”. They have formed this new me and with them by and on my side (quite literally) I am ready to conquer the world.   

Even though I spent a lot of time in a dark place there were always sparkles scattered throughout that darkness; kindness, love and determination. During my stint in ICU family and friends put a team together (ZNM00R) to raise money for the World’s Greatest Shave. They became the first school team to raise the most money EVER in Australia (over $100k). This gave me inspiration to start giving back. I appeared in the 2017 Gold Telethon and Wharf for Ward, I became an ambassador for the Sony Foundation (YOU CAN/youth cancer) and Light the Night (Leukemia Foundation), and in 2018 I banded the ZNM00R team back together to take part in the Relay for Life, once again raising money for cancer research and to create awareness for adolescent and young adult cancer. 

With my education having ended so abruptly I didn’t know at first what I wanted to do about my future. But from deep within me I knew there was something I wanted to pursue -  my creativity. With the loss of my hair and the change in my features during treatment I felt unattractive and genderless. I remember the day MAC and Napoleon came to the hospital to help me feel and look beautiful. I fell deeply in love with the art of makeup. I made the decision to pursue this dream and applied at The Institute of Makeup. I would love nothing more than to go back into the hospital as a fully qualified makeup artist to put a smile on another child’s face - to make them feel beautiful, loved and allow them just a small moment of normality, away from the horrors that they have to endure each day.

I would love nothing more than to go back into the hospital as a fully qualified makeup artist to put a smile on another child’s face - to make them feel beautiful, loved...

I will never forget my cancer journey. It has left its mark on me in all kinds of ways and I know that there are many others who feel the same. It is up to us, the survivors, to tell our stories and show others that there is hope and to never give up the fight. One day I hope there will be no battles left to fight and these illnesses will be nothing but memories and pages in our history books.