Tilly’s 1 in million tough time

Hello, my name is Jess and my sister Tilly who’s only 29 years old, has been been diagnosed with epitheliod hemangioendothelioma (EHE), a rare cancer that grows from the cells that make up the blood vessel. It’s so rare that only 1 in 1 million people are diagnosed with this cancer world wide.

Not only is this cancer rare, but it’s also developing in a highly complex area for Tilly. It has eaten away her C2 vertebrae, and wrapped itself around the major artery that runs from the brain.

Because of this, surgery to remove the tumour is far too risky.

Her only choice being radiation of the tumour and surgery, including a bone graft and plates to stabilise her neck and head.

Tilly has already been in hospital for 3 weeks, bed bound and crippled with pain from this tumour. She’s heavily medicated to get her pain under control.

She’s had a tough road to get to this stage, after multiple emergency departments sent her away assuming the pain was caused by a pinched nerve, without ever doing any scans.

The stabilisation surgery will be done first with 2 weeks recovery time all going well, followed by approximately 6 weeks (minimum) of radiation, 5 days a week. The doctors are hopefully that radiation treatment will be successful.

It’s going to be long road ahead for Tilly.

In order for Tilly to complete her treatment, she’s been advised by her oncology team that she needs to stay close to St Vincent’s Hospital, so they can continue to monitor her closely while she undertakes this outpatient treatment. This will require her to get accommodation for this time.

With these additional expenses, as well as the medical expenses already incurred, plus loss of income for both herself and her partner who is traveling back and forth and staying in Melbourne when he can to be by Tilly’s side, I am asking for your help, the only way I can. For Will her partner to stay by Tilly’s side and for Tilly to stay close to her treatment and the cost of treatment, I ask for a donation of anything you may be able to spare.

Your generosity no matter how big or small, would be greatly appreciated, not just by Tilly and Will, but by myself and our family and friends.

I’ll keep you updated on Tilly’s progress and thank you for taking the time to read her story.