Help Zoe fight DIPG Cancer

52171212_1603880318285571_r.jpegAbout Zoe:

My beautiful daughter Zoe is two years old. She is a very happy-go-lucky toddler who loves to read, sing and play. Zoe is curious about the world she lives in and is always asking me questions about the people, places or things she encounters. Zoe’s childcare educator describes her as a child who’s ‘full of life and so wonderfully affectionate’. Zoe’s loving disposition and joyful outlook makes her a very special girl. She is so much fun to hang out with and we both love spending time together. I am so lucky Zoe chose me to be her mother.

The diagnosis:

In June 2020 Zoe’s childcare educator spoke to me about an unusual gait she’d observed Zoe had recently developed. I had also noticed this and the fact that Zoe was falling over more frequently than usual. I put it down to the fact that as Zoe hadn’t been walking long, these changes were all normal and part of her development. However, not wanting to be neglectful, I spoke to my GP about my concerns. The GP referred Zoe to a paediatric orthopaedic surgeon at Sydney Children’s hospital in Randwick. Following that appointment I was advised that no abnormalities were detected even though they couldn’t explain the reason for the change in Zoe’s gait. By the end of August these changes were becoming more pronounced, so I made another appointment with a paediatrician for a second opinion. The paediatrician suspected that Zoe may have some neurological issue and ordered blood tests and x-rays. The x-ray report stated everything was normal. I had to wait 4-6 weeks for the results of the blood tests.

By mid-September Zoe’s condition had deteriorated significantly, so much so that some days she couldn’t walk without support and her extreme fatigue stopped her from participating in activities at day care. On 28 September I took Zoe to the Emergency department at the Sydney Children's Hospital in Randwick where she had a CT and MRI scan. That evening the neurology team called a family meeting and I was told the devastating news that Zoe had a brain tumour and that the tumour was inoperable due to its location in her brain stem. I was also told that Zoe needed urgent surgery to biopsy the tumour and create a decompression in her skull to create more space for her brain.

I couldn't believe what was happening – it was all so surreal. I could barely function waiting for the results of the biopsy, praying that it would result in the identification of some low grade tumour, but sadly this was not to be. In early October I was informed that Zoe’s tumour had been identified as a ‘Diffuse Intrinsic Pontine Glioma’ (DIPG). A DIPG is a fatal brain cancer that usually affects children aged between 4-10 years old. It is a very rare cancer with approximately 20 cases diagnosed per year in Australia and 300-400 cases in America. Radiotherapy is the only treatment option available to slow the growth of the tumour and prolong life. The doctor said the average survival time for children with Zoe’s type of DIPG is 12 months.

This devastating news completely shattered me. I broke down, I was beside myself, knowing I was facing the very real possibility of losing my beautiful child, my only family in Australia.

Zoe has commenced her radiotherapy. The treatment occurs each day, Monday through to Friday, for five weeks. This round of treatment will finish mid November. Given Zoe’s age she is unable to remain still for the duration of the treatment, so she has a general anaesthetic each time she has radiotherapy. Zoe is coping well with the treatment sessions and has started walking again unaided which is wonderful! While Zoe undergoes her radiotherapy treatment, she and I are staying at Bear Cottage , a hospice affiliated with the Children’s hospital. The care and support from the team at Bear Cottage is truly amazing and I am so grateful for it. I just hope and pray Zoe continues to do well with the radiotherapy and when it finishes, we can go back to our home to spend the remaining time she has together.

My journey with Zoe:

Zoe was born on 18th August 2018. I decided to raise Zoe as a single parent after separating from my ex-husband when I was five months pregnant. Since then I have raised Zoe on my own, without any family support. Sadly Zoe’s father hasn’t visited her since we divorced. My family are in Vietnam and haven’t been able to visit as my father has diabetes, and both my siblings have young children to care for and cannot get extended leave from their jobs to come to Australia. We have video calls with my sister, dad and Zoe each day and Zoe knows that she has a grandfather, an auntie, an uncle and cousins in Vietnam.

It has not been easy being a single parent, but I would never change a thing. I love being Zoe’s mum and this experience has changed me so much. I now know what it is to love someone unconditionally. Having Zoe in my life motivates me to always try my best for the both of us. Since Zoe’s diagnosis, I have stopped working. As the future is so uncertain I cannot return to work. This situation has put a huge financial and emotional stress on me. My only wish is to spend what time I have left with Zoe and be the best mother I can to her. I never imagined I would be in this terrible situation and would need to ask people for help to get me through this difficult time, but I am. Your prayers and any financial support you can give would be very much appreciated. Thank you.
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