CRYSTAL'S STORY
Crystal was diagnosed with cancer on the 20th of December 2015.
After suffering with knee pain for 12 months and visiting the doctor many times in that year, it was decided that Crystal had growing pains. On the 19th of December 2015 Crystal's pain had increased and the pain was travelling to her abdomen.
On arrival at the hospital the medical team thought that it was ovarian cysts and nothing to be too concerned about, this was 7pm. By midnight we were told that Crystal had cancer and would be transported to the Royal Children’s Hospital.
There our journey began, on the 11th of January 2016, as Crystal underwent an enormous complex operation. She had a 16cm tumour removed from her abdomen and her lower spine.
The operation took 18 hours followed by a very long road to recovery. Initially before surgery the oncology team thought that it was a very low-grade malignant tumour.
Once the tumour was removed further biopsies were undertaken. We were then told that Crystal's tumour had been ramped up and we were now dealing with a very high grade aggressive cancer known as a malignant Peripheral Nerve Sheath Tumour.
Predominately, an adult cancer and not seen too often in children. Our doctor informed us that it was very rare affecting one in one million people.
Following the operation, we were referred to the palliative care team for support, and radiation therapy commenced. Chemotherapy followed 12 months later. This was very gruelling on Crystal's body. In December of 2017 we were told that the treatment was not working and that this cancer would claim our daughter’s life. 2018 had many ups and downs and Crystal was becoming weaker and fatigue was ever increasing, her tumour was growing rapidly.
Crystal spent many, many weeks in hospital and her major life goal was to achieve her Year 12 graduation in November of 2018.
She sure made it and had a wonderful night, she was so proud and looked so beautiful.
We were also very proud of her but also heartbroken that Crystal was not going on to have the future that the other young people were about to embark on.
By December of 2018 Crystal was growing weaker and weaker, and even on Christmas Day she struggled to open her gifts. By early January of 2019 we could see that she was slipping away.
Crystal died on the 14th of January with us by her side and our very special support person, Catherine Haldane, from Very Special Kids, was also there to see Crystal spread her angel wings.
It has been the most devastating experience and the loss of a beautiful vivacious young girl is just not right.
Crystal was kind, selfless, caring, and ever so brave and courageous. It has left a gaping hole in our lives that will never be mended, we miss her every second of every day, and would give anything for her to still be here.
This Foundation was a dream that I promised Crystal I would fulfil in her memory. Crystal was excited about it.
We experienced cancer in an adult world, which just did not work for Crystal as she was still a very young girl and her needs were very different to that of an adult facing the same fate.
We have big dreams and aspirations. We want to see children and young adults living in South West Victoria, facing an end of life diagnosis, have age appropriate end of life care with medical professionals trained in paediatrics and providing for the needs of young adults .
The needs of a child and young adult are different to that of any other age group.
We want to be able to offer acts of kindness to our families, filling some of the needs that were once small, which become overwhelming when facing the end of your child’s life.
We can’t move mountains or change the outcome, but we can meet the needs of the little things that really matter.
Jo Sinclair
Crystal’s Mum and Founding Director
