Support Our Beautiful Liv to Fight Blood Cancer

Liv’s Journey to date

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

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.

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.

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.

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.

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.

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.

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

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.

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

Blood Cancer Diagnosis

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.

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.

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

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.

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.

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).

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.

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

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:

How you can help

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