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Bethany's Story

When a family has to cope with the illness of a mother and daughter, it is heartbreaking. Bethany was born with a hereditary genetic medical condition called Neurofibromatosis Type 1 (NF1), which she inherited from her mother, Jennifer. She was diagnosed at birth and paediatric testing indicated that her NF1 had little to no visible impact on her ongoing health, but it would be continually monitored for any visible symptoms. This changed in April 2014.

Jennifer (Bethany's mother) was part of a lifetime study of people with NF1 and in July 2009, after some routine NF1-checkup based tests, received the phone call which rocked our world. She had been diagnosed with a brain tumour and a few short weeks later we were having consultations with a Neurosurgeon. A partial excision was conducted, and a biopsy confirmed the tumour to be a Juvenile Pilocytic Astrocytoma - in the Glioma family of tumours. Over the next 4 years she underwent several surgical procedures and treatments - including another partial excision and both radiotherapy and 12 months of chemotherapy.

Christmas Day 2012 she was admitted to hospital after having some apparent epileptic seizures, however this was a symptom of new tumours. Surgery confirmed that the tumour had metastasised [or use the non-medical word 'mutated'?] into an Anaplastic Astrocytoma, a much more aggressive tumour in the Glioma family, and was spreading through her cerebral-spinal fluid. New tumours had formed the length of her spine. These tumours put pressure on her spinal cord and caused seizures, progressive paralysis, and just over 5 months after being diagnosed with the new tumours, in May 2013, she finally lost the battle and left her tattered earthly body behind.

Almost 12 months after losing Bethany's mother, the observation was made that Bethany's eyesight wasn't as good as it should have been, so her paediatrician sent her for a routine MRI. The MRI showed a brain tumour growing in her Optic chiasm, and was wrapped around her optic nerve. The doctors advised that any operation to remove the tumour would render her permanently and completely blind, so the 'wait and see' approach was employed.

In September 2014 specialist eye tests were conducted at the Sydney Eye Hospital, and after extensive testing it was discovered that the signal from her eyes was reaching her brain at different rates, and that she was actually colour-blind in one eye. Every few months Bethany underwent an MRI, and in July 2014 there was an indication that there may have been negligible growth.

Although Michael’s employer had been very supportive whilst his wife was in hospital, and during Bethany's diagnosis, he was made redundant in the second half of 2014. As a single father of two girls, and a full time carer to Bethany, he has been unable to find new employment. This has placed enormous financial stress on the family and continues to do so.

In October 2014 Bethany's tumour growth was no longer negligible - there were clear and significant indicators that the tumour was growing. Bethany's doctors referred her to a Neurosurgeon for a biopsy to determine the type of tumour and identify the best chemotherapy drugs to use. In November 2014, Bethany and her father were sitting in a neurosurgeon's office, not just any neurosurgeon's office - the same neurosurgeon who conducted several operations on Bethany's mother. When the neurosurgeon walked into the office, the look of surprise, and then shock, on his face was very apparent. Bethany’s scan showed a tumour similar in size to the one initially reviewed 5 years prior.

Bethany commenced chemotherapy in October 2014, and will be undergoing at least 8 rounds of treatment - each round consisting of a combination of two drugs administered weekly over a period of 6 weeks. The current plan is for chemo to occur over 12-18 month period.

Due to weekly hospital visits to admister chemotherapy, administering the after-care required, regularly missing days or half days of school due to feeling unwell, and routine trips to both Westmead Children's Hospital and the Sydney Eye Hospital, Michael (Bethany's father) is not able to work full time.

Both the Olivia Lambert Foundation and the Snow Foundation, have stepped in to provide financial support to allow Bethany and her family a reasonable quality of life without having to move out of the family home. Their assistance to date has been a massive godsend.

To help the Olivia Lambert Foundation help other families living with childhood cancer, you can become a sponsor or make a donation.

Bethany & Michael on Mix 106.3 Canberra

Here are the links to the interview by Kristen & Rod from Mix 106.3 Canberra on Wednesday 18th February 2015.

Bethany & Michael - Mix 106.3 Intro

Bethany & Michael - Mix 106.3 Interview