On New Year’s Day 2022, and at just 3 years old, Sirin was tested for and diagnosed with stage 4 high risk neuroblastoma. Her mum, Wannee, tells her story.

Sirin kept getting urinary tract infections and following the third time, in May 2021, we took her to a urologist to investigate further.  She was diagnosed with low haemoglobin caused by a viral infection. After weeks of taking antibiotics, she was still unwell and not able to walk. 

In October 2021 Sirin started to complain about leg and back pain with night fevers.  There was no clear cause and we were told it was probably a combination of a virus and growth pains. Wannee, Sirin's mum

Early on Christmas Day Sirin was very distressed.  She cried and told us she was in lots of pain.  She could not move, she was limp, had a high fever, no appetite, low energy and had coloured urine. We took her to Emergency at the Women’s and Children’s Hospital (WCH) Adelaide. After an x-ray, blood test and urine test we were told Sirin had probably been infected by a mosquito bite.

On New Year’s Day 2022 we took Sirin back to WCH.  This was during the COVID restrictions. Only one parent was allowed at a time and to make things more stressful, I was 29 weeks into a pregnancy with complications. 

After a CT scan, the doctor came to me and asked that I contact my husband so that we could arrange a telephone conference. “Your daughter has a mass in her abdomen – we need to do an MRI scan”. After the scan the oncology team came to me and said, “Sirin has a cancer called neuroblastoma.”

My heart stopped. My world collapsed. I was numb. We should not be hearing this. Wannee, Sirin's mum

Sirin was diagnosed with stage 4 high risk neuroblastoma. The primary tumour  was on the right side of her adrenal gland measuring 9 cm x 12 cm. Her treatment would take around 18 months including five rounds of chemotherapy, stem cell harvesting and transplant, tumour resection and six rounds of immunotherapy.

Things then moved very quickly.  Sirin had surgery to insert a central line and to carry out biopsies on her bone marrow and primary tumour.  Then the first round of chemotherapy commenced. We held on to hope, taking one step at a time, grateful for the times we could spend together during the treatments that seemed never ending.

Finally, we could see small improvements.  Within limits and between treatments Sirin could walk again, she could sing dance, laugh, eat – the Sirin we knew. What spirit she had then! We were constantly amazed and inspired by the way she was coping with such a dreadful process. Wannee, Sirin's mumIn the middle of all the treatments Sirin’s sister Arin was born. Although this brought additional stress and worry, it also brought joy into an otherwise traumatic situation.  Sirin loved her sister and they were immediately close.

  

During chemotherapy Sirin was diagnosed with ITP, her immune system attacking her own platelets.  She received 19 platele transfusions over 6 months and we are so very grateful to the donors.  However, Sirin had an allergic reaction to the transfusions and had to be given additional medication to treat the allergy. In addition, Sirin’s body was reacting to the chemotherapy drugs, making it difficult to breathe and causing swollen eyes.

After five rounds of chemotherapy, Sirin had another CT scan and bone marrow biopsy.  The results were promising and showed her body responding well.  There were no active cells in her bone marrow and the tumour had shrunk.  The next step was the tumour transection.

Surgery day was on 12 July 2022.

Very sadly, Sirin did not survive the surgery and passed away peacefully on 15 July 2022.

Sirin was always acutely aware of what was going on, and yet throughout the long, drawn-out trauma and heartache her resilience, spirit and humour shone through.  She could see our pain and insisted that we should not be too sad.  She was wise beyond her years. During her short life she brought joy, strength and love to us and many others. She was, and will continue to be, an inspiration.Wannee, Sirin's mum

  

Sirin

 9 October 2018 – 15 July 2022

 Forever 3