Early Career Researchers

Nicole Croft’s son, Freddie, was diagnosed with Ewing Sarcoma aged six

“He had small signs, chest pain that the GP put down to growing pains.”

Freddie was misdiagnosed with an ear infection. After a course of antibiotics, he didn’t get better. She took him to an optometrist, then a dentist, who spotted a raised temple, and advised she took him to A&E.

“It wasn’t obvious, like a broken arm. His pain was intermittent over a long period, with lots of health professionals in the middle. You put your trust in doctors but looking back, I wish I’d done more,” Nicole said.

“At A&E, they wanted him to see a facial specialist but couldn’t see him that evening, so sent him home, so I thought if they were that worried, they wouldn’t have sent him home.”

He was worse in the night, and she took him back the next day. “By that point, he was in so much pain.”

A biopsy led to a diagnosis of Ewing Sarcoma. Freddie began chemotherapy.

“Chemotherapy is horrific. He had 14 cycles with a two-week gap between each cycle, but his body took so long to recover that in total it took around ten months, with his final round in July 2020. Just when we thought it was over, he got Mucositis badly and ended up in hospital for a week on a morphine drip.”

During Covid, it got to a point only one parent at a time was allowed at his bedside.

“I had three children then, now four, and it was hard for our other two not to lose their parents completely. We took it in turns each night, as we didn’t have child care.”

Over four years on, Freddie has regular scans, and manages multiple side-effects.

Damage to his eye led to a cataract operation. He has thyroid and growth hormone problems, with low cortisone levels.

“Cortisone helps you recover from shock after say, a broken bone, so we carry an emergency injection everywhere. It terrifies me, as paramedics don’t carry it, and without it, it could kill him.”

Now 11, Freddie is still too young to understand the scale of his illness.

Nicole is keen to raise awareness of the impact of conditions like Freddie’s and is involved with various charities. She fully supports research into improved treatments for children like him.

“I’d never wish this on anyone. The treatment is heartbreaking, brutal - horrific. A year of your life is gone to it, and then most children end up with side effects they carry forever, not to mention the absolute terror of relapse, which sadly is really high.”

She says: “As a family who has gone through it, I wish there was a treatment because of the terror of it coming back. Every brick wall you can hit, you hit. You’ve got this cancer that’s particular bad, and the big cancer charities don’t do anything about it because it’s so rare.

“But a high chance of it coming back with no research is not okay, which is why we do our charity work. We have to do something. If we can pull some good out of everything we went through, for other people, or if there’s a relapse, it’s why we do it.”

Nicole believes all research into cancer can benefit all.

“You never know. What if people like me pushing for Ewing Sarcoma research has a positive impact on all cancer research? I like to think, I’m fighting for people with different cancers too.”

She adds: "I think for a rare cancer as well, as there’s not many to advocate for research, this is important as there are few of us to fight it. So, keep fighting for us.”

Photo credit: The Croft Family