In late December 2019 our world was turned upside down. A week after my mother had a mastectomy for her second time fighting breast cancer, I received a phone call during the night and was told that my 31 year old brother, Jack, had scan results that showed he had lesions on his liver.

Around November and December he had been complaining of stomach pain, bloating and acid reflux... as you can imagine these results were totally unexpected.

He had started his new life in NYC with an amazing job, beautiful flat in the Upper East Side and started his loving relationship with his girlfriend Dani, but receiving news like this is never easy, especially without family. I decided to fly out immediately, and upon my arrival jacks pain sky rocketed causing Dani and I to rush him to hospital.

It was there that he had further test results done, concluding it was cancer. We first heard it was diagnosed as Epithelioid Hemangioendohelioma (EHE) a very rare sarcoma that can lie dormant for long periods of time and then grow rapidly. Although we were devastated by this news, it was comforting to know that it isn’t always aggressive, and that common treatment is liver transplantation.

Upon this news my Husband (also called Jack) put himself forward to be Jacks live liver donor, without any hesitation or doubt. Finding a live liver donor is much harder than you would expect, there is only a 1-5 chance of anatomically ‘fitting’, let alone all the other rigorous tests to determine you are a match... but of course, Jack was a match for Jack. We all had a massive sense of relief that a suitable donor was found, and that transplant surgery was scheduled for a week's time.

Not 24 hours had passed before we received news that we couldn’t believe. Jack had been misdiagnosed. His cancer wasn’t EHE, it was Angio Sarcoma (often referred to as a beast of a cancer) - an aggressive systemic cancer with a poor prognosis accounting for only 2% of liver cancers, and one of which transplantation wasn’t an option.

With it being so rare, most cases of angio sarcoma are misdiagnosed. Being part of the angio sarcoma awareness group this is very evident and a familiar story. By the time of his new diagnosis, Jacks liver was already under burden, with rising bilirubin levels and declining liver function, treatment was limited.

It’s this unpredictability of this cancer and the symptoms that come with it that make it so cruel. With its rarity comes lack of knowledge, and with lack of knowledge comes lack of treatment.

Jack's research for his bachelor's degree, master's degree and PHD was cancer research. It is what he was so dedicated towards; trying to find answers and solve the puzzle that is cancer. The last thing I feel I can do for my brother is to help push for more research. I feel that is what he would have wanted, and hopefully help those who have to suffer this disease in the future.

With the uncertainty that COVID brings, we understand the difficulties surrounding money. Any contribution, no matter how much, would be greatly appreciated.

May we all remember Jack for his gentle kind nature, his quick wit and that beautiful smile he had.

Lots of love from your little sis,

Em x

For more information on Angiosarcoma please visit: https://www.cureasc.org/