In February 2020, Geraldine Hilmi’s son Shaun complained of a pain in his leg. Shaun, who was 16 at the time, was a talented athlete who ran six times a week and played senior tennis. He saw a physiotherapist who suspected that his leg pain was due to a running injury.

 

 

Physio helped initially and Shaun, from Co Tipperary, improved a little before the pain started again two weeks later. At this stage, Covid restrictions were in place so the secondary school student began to have physiotherapy over Zoom. “Shaun wasn’t getting any better and the physio said to me, ‘Shaun may have something wrong with his hip. I think we need to do an MRI scan’,” Geraldine recalls. After his MRI scan in Limerick, Shaun was called back for another scan and that same afternoon, the family’s GP received an urgent email to say that a mass had been found on Shaun’s sciatic nerve. Shaun had further scans and a biopsy and on May 28, the family were told that it was Ewing sarcoma, a rare type of cancer that affects bones or the tissues around bones. The next day, Shaun was admitted to St Vincent’s Hospital Dublin to start chemotherapy.

“They had hoped to do chemo and then radiotherapy and surgery, and in the worse scenario he’d be left with a limp, but he never got to have the surgery,” says Geraldine. “He started the chemotherapy at the end of May, which he had right up until September 15 when he was supposed to have a month off before he started the next round because the chemo was so severe. In the meantime, the pain started to come back in his leg and his buttock. We were in and out of the hospital from nearly the end of September to the beginning of October and they redid all the scans. It was then that they said that the cancer had metastasised and there wasn’t anything that they could do. They gave him four to six months.”

 

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“It was too late for us and Shaun but, if you’re thrown in at the deep end, reach out to groups and people who have been through this." 

Shaun Hilmi

The family were devastated. Shaun received palliative radiotherapy in hospital before returning home in December. Shaun sadly passed away in January 2021 and he is missed very much by Geraldine, his father Lee, sister Laura and brother Craig. Geraldine is sharing his story because she would like to raise greater awareness of sarcoma cancer. “I had never heard of sarcoma until Shaun was diagnosed,” she says. “People don’t know what it is or that there are more than 50 different sub-types of sarcoma.”

Her advice for anyone who receives a sarcoma diagnosis is to get support. “There’s so much lack of knowledge about sarcoma and it’s very difficult to try and guide yourself through that journey when you don’t know anything,” she says. “It was too late for us and Shaun but, if you’re thrown in at the deep end, reach out to groups and people who have been through this and who know, and they can give you so much guidance on various aspects.”

 

 

 

Contact the Irish Cancer Society Support Line

If you have worries or concerns about cancer, you can speak confidentially to an Irish Cancer Society Cancer Nurse through the Freephone Support Line on 1800 200 700.

Monday to Friday, 9.00am - 5.00pm

Roz, Cancer Nurseline

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