On the 29th of March 2014 my beautiful younger sister Naomi was told the devastating news that she had been diagnosied with B-ALL (Acute Lymphoblastic Leukaemia), a form of blood cancer common in children and young adults. She immediately began grueling 26 months of treatment at The Alfred Hospital where she spent her 18th birthday in hospital 1 week after admission. Within the first 6 week intense cycle, Naomi was in full remission (yay!), however she had to complete the full protocol of treatment. We saw her suffer the harsh side effects of intravenous chemotherapy, intrathecal chemotherapy, subcutaneous chemotherapy injections, lumbar punctures, bone marrow biopsies, zoladex implants for fertility - and my family and I felt helpless. Through the last few months of her treatment, Naomi was able to manage her blood tests, monthly IV chemo, and daily chemo tablets. She was able to start getting her life back and starting working a few hours a week in conjunction with part time study. She officially finished her treatment in June 2016.
In October 2016 tradgedy hit our family again, as a blood test and biopsy had confirmed that Naomi had relapsed, with 94% leukaemic cells in her body. Treatment was to start immediately the next day, however this time it was much different. She was to try a new immunotherapy drug which would hopefully get her into remission with the aim of a bone marrow transplant to "cure" her. Long story short, the blood disease continued to grow whilst she was on this drug which sent her to ICU. Doctors were consulted with accross the world and Naomi was lucky enough to be given a second immunotherapy drug which was yet to even be used at The Alfred.
She wasnt allowed to keep them so took a photo!
Naomi before starting the new immunotherapy drug
Thankfully this did the job and Naomi was once again in remission, but it was still not over for her. Just 2 weeks later in March 2017 she underwent her bone marrow transplant from an unrelated donor. (Thank you endlessly Mr.Anonymous!) Briefly this involved strong chemotherapy, full body irradiation, and isolation in hospital for 5 weeks.
Our younger sister Isla hugging Naomi in ICU
Pre bone marrow transplant - waiting in radiotherapy
Once again it was an extremely tough time and Naomi was back to square 1 trying to recover from these harsh and debiliating effects on her body. She also celebrated her 21st birthday in isolation during this time. Couldn't wipe the smile off her face, given the circumstances.
Now, Naomi is well on her way to recovery and early signs show that the transplant was a success. She is still required to go to hospital 3 times a week to have treatment to support her weakened immune system.
Her main concerns have always been to give back to those who have been there for her throughout this journey, whilst also lightening the stress and worry about definite future medical costs in regards to her fertility and IVF treatment. Your kind donation will go towards;
1. Ward 7 East at The Alfred Hospital
Their undeniably incredible and professional work and support physically, mentally and emotionally is the reason Naomi is here today. The amazing people include nurses, doctors, social workers, physiotherapists, nutritionists, dietitians, pharmacists, cleaners and admin staff. From making life saving decisons to saying hello whilst on their work break, these are the reasons Naomi wants to provide a donation to the ward so they can hopefully upgrade the staff room.
Naomis biggest support has been our parents. From visiting her every day in hospital, taking her to out patient appointments 3 times a week, emergency department admissions in the middle of the night, and providing full time care for her at home through the tough months. Neither of them have been able to work through long periods of Naomi's treatment, and are currently not working until she has reached a full recovery as she is still very dependent on them. Naomi would like to relieve financial stress by contributing to medical costs such as outpatient drug costs, immunisation fees, car parking, petrol, and regular house hold bills. The mere $50 a fortnight carer's allowance our parents recieve obviously doesnt cover these costs.
At this early stage in her life, my sister is already having to be concerned about how she will fund the chance to have children in the future. Before her bone marrow transplant Naomi had to make a decision to have her full ovary removed and frozen, with the hopes that with this technology it will one day allow her to be a mother. The cost of storage is $550 per year, and Naomi has been told that once she decides to have children and re-implants her frozen ovary, she must go down the IVF path for the chance to have kids. (Est $10,000 per cycle, out of pocket). Fertility is not something that she should have to be worrying about at this stage in her life, especially on top of her current situation. Your generous donation will go towards frozen ovary storage fees and IVF treatment in the future.
We love Naomi as a sister, daughter, granddaughter, girlfriend, cousin, friend, and colleague, and your support would mean more to her than you know.
Thank you so much for taking the time to read her story and share/post on public to spread the word.
- Allison Roberts
- Nicholas Leech Jr
- Jenny Zeibig
- Robyn Ragauskas
- Faina Levin
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