"Time is critical": Midlands man seeks US treatment amid battle with rare and aggressive cancer

By Rebekah O'Reilly

Midlands man Daniel Mooney is fighting for his life against a rare and aggressive form of cancer.

The 37-year-old was diagnosed with stage four Desmoplastic Small Round Cell Tumours (DSRCT) in May of last year, a rare form of sarcoma cancer with only about 30 cases reported worldwide. This form of cancer is most commonly found in children.

“It's a very fast-spreading cancer,” Daniel said. “It primarily pops up in your abdomen, and it spreads throughout the body.

“Because of how aggressive it is, and how few symptoms people get – in almost all cases patients are diagnosed at stage four. It really is a serious battle from there.”

Daniel's only symptom before diagnosis was a small area of sensitivity in the area of his belt buckle.

However, after going for a CT scan, doctors discovered a 25cm tumour behind his bowel, as well as signs of cancer throughout his body.

Daniel subsequently spent six weeks in hospital, before eventually being diagnosed in Crumlin Children's Hospital.

“We had done tests in three different hospitals. They knew I has cancer, but they just couldn't figure out what type of cancer I had,” Daniel said.

Over the past ten months, he has received nine rounds of chemotherapy from Tallaght Hospital, and has since transferred his treatment to St Vincent's Hopspital, where he received a major surgery to remove the cancer on Monday, February 17.

The next step to his treatment would be Abdominal Radiation – a treatment that some Irish medical professionals have called out of date and toxic for the body.

“The doctors are saying 'you have a cancer that's going to kill you, but if you do this treatment – it could help you, or it could also kill you',” was Daniel’s asssessment.

It was before Christmas that Daniel decided he had to take his treatment into his own hands – as he was told that he couldn't receive any further chemotherapy.

He received a business card for The Cleveland Clinic in the US, where he learned of a treatment with the potential to extend his life expectancy.

Daniel consulted with Dr Peter Anderson from the Cleveland Clinic.

“He eased my fears and my concerns – he said that while I do have stage four cancer, I'm actually in the 'good care' category because it's only in my abdomen.”

The father-of-two is hoping to make the journey to The Cleveland Clinic for a MRNA vaccine treatment that doctors hope will teach his body to recognise and fight the cancer.

He is hoping to travel to the US just three weeks after his surgery, as one of just 12 patients selected to undergo a six-week trial for the MRNA vaccine.

“There's a couple of factors that need to line up. I need to have the common variant of SRCT that about 65% of people have, my immune system has to have a strong uptake with the vaccine, and I need to be NED – which is no evidence of disease.

“I need to have so little cancer in my body that they can't detect it – even though they know it's there – which is a big ask. That's why the surgery is so important, and then also the follow-up radiation therapy.”

When asked about what kind of impact his diagnosis has had on himself and his family over the past ten months – Daniel said it has been insurmountable.

“I think it has affected my wife more than it has affected me,” he said.

“That fear of being left behind with two young children under the age of three. I know I have to go through this battle, and I'm fighting for my life, but she has to watch me going through it.”

The effect that his battle with cancer has had on his young boys, aged just one and three, has been something Daniel says no child should have to deal with.

“My three year old said to me last week 'I love when you don't have to go into hospital'. Children aren't supposed to worry about their parents, we're supposed to worry about them.

“Throughout the chemotherapy I've been too weak to mind them or to play with them, and we have had to put them into childcare.

“How am I supposed to tell them I have to go back to the hospital again?

“It's gotten to the point where I'm thinking – should I be going to seek this treatment to try to get more time with them, or should I be staying at home to make sure I don't miss out on these precious days with my family.”

The cost of treatment is another challenge for the family, as they have been surviving on a single part-time salary over the past year due to Daniel's illness.

A GoFundMe page set up to raise money towards the costs of treatment, including medical care, travel, related expenses, and essential diagnostic procedures like DNA sequencing, has garnered a huge response from the public - reaching over half of its total target in the first 24 hours.

To date, the fundraiser has amassed €160,450 of its €211,600 goal from some 2.9K donations - reaching just over 70% of Daniel's target.

"Thank you to everybody for their support. Whether you have shared the page, or donated, it all makes a difference.

“Over the last ten months, it's even the smallest gestures from people that have made a difference, there's been a lot of kindness shown by people," Daniel said.

To donate, go to: https://www.gofundme.com/f/give-dan-a-chance