<div><strong>UPDATE: 19th May </strong>
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<div>We wanted to take a moment to both thank everyone for their support to date and provide an update on Liv’s journey. 
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<div>Firstly Liv, John, and our family have been completely blown away by the support from everyone to date. It’s been truly heartwarming and has resulted in many (happy) tears. 
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<div>As an update on Liv’s journey, she has now undertaken many rounds of IVF treatment, which also included an experimental procedure to remove her left ovary for with the hope of potentially being able to mature follicles and eggs in a lab in the future. 
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<div>The transplant process will start soon. On 26 May, Liv will be admitted to the Royal Melbourne Hospital’s Bone Marrow Ward to commence treatment. 
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<div>On day one a ‘Hickman Line’ will be inserted into her chest to provide long-term access to veins for chemotherapy, intravenous medications transfusion, nutrition and blood draws. 
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<div>From 28 May to 3 June she will undertake a regime of intense chemotherapy, including Busulphan and Cyclophospharmide. 
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<div>On 4 June she will begin immunotherapy ahead of the transplant.
The stem cell transplant will take place on 5 June – and in the world of bone marrow transplant’s, is known as ‘Day 0’. 
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<div>On this day, her brother James’ donated stem cells will be inserted intravenously through the Hickman Line over approximately 30 minutes, for what will be a significant but by all reports an uneventful procedure. 
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<div> From then on, as a natural bodily response to new cells being introduced to her system, she will begin to deteriorate over the following two weeks and experience some degree of Graft Versus Host Disease. On days +1, +3 +6, and +11, she will also undertake Chemotherapy regimes of Methotrexate to maintain conditions for the transplant to graft correct. 
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<div>If the graft is successful, it is expected to take 9-12 months to recover, with the first 100 days being the most critical period, where Liv (and John as her primary carer) will need to remain isolated. During this process, it is expected that recovery will not be linear, and it is inevitable that some forms of infections will occur and provide set backs, given she will have no to little immune response available. That said, we are keeping our fingers and toes crossed that this process is as smooth as it can possibly be. 
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<div>Over this period, if you would like updates on Liv’s condition, we ask that you reach out to Bridget or John to ensure Liv is focused on her own recovery and doesn’t feel any pressure to respond to no doubt many messages of love and support which will come her way. 
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<div>Once again, thank you to each and every one of you for your support and we will continue to keep you updated on her journey through this page.
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<div><strong>Liv’s Journey to date</strong>

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<div>After almost 3 years of ongoing health issues, Liv has been diagnosed with an extremely rare and aggressive bone marrow disease and blood cancer.

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<div>Liv’s journey started almost three years ago, when she required major hip, femur and pelvic surgeries on both her hips to correct a rare form of hip dysplasia, and ensure she could continue to walk. Since then, she has been battling an uphill battle, where she has endured 16 surgeries in the past 3 years, and with every one arising in further complications.

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<div>Along this journey she was diagnosed with a connective tissue disease, along with other autoimmune issues, and her blood counts (e.g. platelets, red blood cells, etc.) continued to spiral downward. Simple procedures have become extremely complicated with Liv’s low blood work, and she has been forced to undergo many transfusions to prepare her for the simplest of procedures and keep her alive.

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<div>Over this period, she has had limited ability to work, etc, due to long recovery times; needing to visit so many specialists in various fields; and undertaking many, many medical tests, such as multiple bone marrow biopsies, etc.

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<div>Due to her low blood cell counts, she has also been significantly immunocompromised during this period, being forced to work from home, and needing to isolate and avoid crowds or potential sicknesses.

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<div>On top of this, the many surgeries she has had, have cost over $30,000 and yet still have not corrected her hip and mobility issues.

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<div>In one surgery, she almost passed away due to a major bleed where she did not respond to any blood clotting medication. She also never fully recovered from the procedure, with her pelvic bone not healing and having sustained permanent nerve damage as the surgeon fought to save her life and stem the bleeding.

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<div>It was at this point that we knew there was something terribly wrong, and with symptoms and medical conditions not adding up.

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<div>Only after almost three years of working with an extensive team of world renown specialists, including multiple haematologists, where they continued to exclude various conditions as her health continued to deteriorate have they been able to come to a diagnosis.

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<div>All in all, this has meant that it has been an unbelievably tough 3 years for her, physically, mentally, and financially.

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<div><strong>Blood Cancer Diagnosis</strong>

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<div>The week before Christmas 2023, Liv received the news of suspected Myelodysplastic Syndrome (MDS) and would need to be transferred to Peter MacCallum Cancer Centre for extensive treatment. Approximately 1,500 people are diagnosed with MDS in Australia every year, with the median age of patients being 77.4 years old.

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<div>Further genetic testing and typing was completed in January 2024, which confirmed the diagnosis of MDS along with the news of the specific sub-type being an aggressive variant and Liv was given a life-expectancy of 1-2 years without treatment.

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<div>However, the only possible course of treatment is <strong>aggressive chemotherapy</strong> followed by a <strong>Bone-Marrow Transplant (BMT)</strong>, which in many other instances, is not recommended to patients due to the extreme nature and risks of this procedure.

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<div>In this case, given her short life expectancy without treatment, the BMT has been deemed the lesser of the two evils, even though its fraught with its own very real dangers. Liv is also high risk of developing a further diagnosis of Acute Myeloid Leukaemia (AML) which poses further challenges with treatment.

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<div>Since Liv’s diagnosis, a high priority has been finding a donor. So far, we have received the exciting news that Liv’s brother James is a 100% match. Before James can be confirmed as a donor, extensive testing needs to occur, which includes James flying to Melbourne on multiple occasions for testing.

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<div>During this process, Liv will lose her entire immune system, with the transplant not taking place until blood counts are 0, rendering her unable to respond to any potential infection which could be encountered. She will need to be hospitalised in an isolated and sterile hepafiltered environment for a substantial period of time (up to 2 months).

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<div>The treatment will also render Liv infertile and unable to bear children in the future unless IVF related prevention measures are taken now. This includes needing to freeze eggs, embryos, and ovarian tissue to give her any realistic chance of children in the future.

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<div>On top of what will be a risky, emotional, and painful process, there are bound to be significant financial pressures this creates, too.

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<div>The treatment will require her to take 9-12 months off work, while her partner John will also be required to take substantial time off work to care for her during recovery. On top of the substantial loss of income to them both, there will be a barrage of other costs, such as:

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<li>Cost of Liv’s medical treatment and medications

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<li>Support for James or another bone marrow donor (if required) to travel to Melbourne and donate, plus other costs for medical tests and treatments the donor will require to complete the transplant

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<li>Fertility treatments which are expected to cost at least $50,000 out of pocket, and then ongoing annual costs $1,000 – $2,000 per year ongoing. Then further costs when undertaking IVF treatment to become pregnant, which could easily be $10-20K or more.

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<li>A wig to help her mental state and self-image during treatment

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<li>Hip surgeries post-transplant to correct previous failed procedures due to the condition

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<div><strong>How you can help</strong>

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<li><strong>Financially:</strong> I have set up this go-fund me page to help support my beautiful sister in this unbelievably tough period in her life. While we cannot take away the pain and brutality of the path ahead, I hope we can at least ease financial pressures. <strong>Any funds you may be able to spare will go towards helping Liv complete IVF treatments which she is currently undertaking, completing the BMT in late May, and supporting her through the long recovery afterwards.</strong>

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<li><strong>Registering:</strong> Many people do not realise how important it is to find a matching bone marrow donor, as the Australian registry is a ‘opt in’ process. While a sibling is the ideal donor, only 30% of people are lucky enough to have a sibling test as a 100% match. <strong>You could be able to help someone in need and save a life, by having a simple mouth swab test and adding yourself to the </strong><a href="https://strengthtogive.org.au/register/?fbclid=IwAR2aT7PSGYh2X2xn2Rjx274Ykf33WJybWUXdOs1UPIsqrGZYb40K-IxWpOY" target="_blank" rel="noreferrer noopener"><strong>registry (click here</strong></a><strong>).</strong> It would mean a great deal to Liv, her partner John, and myself if you did this. Donations are painless for the donor, only take 4 hours for the donation itself (a process that is similar to donating plasma), and will genuinely make the biggest impact you could think of in life.

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<li><strong>Donating Blood</strong>: Liv has undergone countless transfusions to date and will soon be transfusion dependent (i.e. needing transfusions regularly to keep her alive). <strong>If you are able to donate blood, please do so as it continues to keep people like Liv alive. <em>For more information on donating blood, click </em></strong><a href="https://www.lifeblood.com.au/blood" target="_blank" rel="noreferrer noopener"><strong><em>here</em></strong></a><strong><em>.</em></strong>

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<div>Thank you for reading and keeping Liv in your thoughts and prayers. ❤️

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