'After 19 rounds of chemotherapy our consultant said he didn’t think he could cure Ben' - Mother’s plea to help save superhero son’s life
During many of his 19 chemotherapy treatments, five-year-old Ben Farrell jumped up onto the bed "like Spiderman" and sang his way through the process.
“Do you know what you’re doing?” Ben asked a consultant at Crumlin Hospital who didn’t stick to his regular routine of first “sleepy medication” and then anti-sickness tablets.
“Ben is facing a battle no five-year-old should ever have to face and he does it while remaining happy and singing and cracking up the nurses," his proud mum Valerie told Independent.ie.
“He is full of life and full of character. He’s a really happy little boy and we want to do everything we can to keep him that way."
Ben was diagnosed with a rare form of Wilms tumour on Christmas Eve 2015. He had a stage IV tumour.
“We are in the devastating position where our options are limited and all but run out in Ireland. His treatment in Ireland is not working and we need to raise a lot of money in a short time for a clinical trial in America,” said Valerie.
Ben has a rare form of cancer where cells in his body are making his tumour hard to treat.
“None of the consultants in Ireland have seen these cells before. They’ve contacted America and Europe for treatments but nothing so far has been proven to work,” said Valerie.
“There are clinical trials for Ben’s cancer in the US that have shown promising results in the labs. They’ll do testing on Ben’s tumour and they’ll see what’s unusual about it and see if a particular treatment will work.
“It’s a trial so the results haven’t been proven but we’ve few options left.”
The treatment in the Children’s Hospital in Washington is an estimated €260,000 and the family have launched a Go Fund Me page to help raise the life-saving funds.
“We’ll have extra expenses too to get to Washington but if we can fund the treatment we’ll find a way to cover the other costs,” said Valerie.
The family's struggle began at Christmas time last year when Ben began complaining of a sore tummy.
“We thought he just had a bug or it was an excuse for him to sleep in our bed. His pain wasn’t excruciating and it would come and go.”
Valerie brought Ben to a doctor who told her he had acid reflux.
“Being a mother I knew it wasn’t acid reflux. My mammy instincts kicked in and I brought him straight to the hospital.”
The day before Christmas Eve, Valerie was told a parent’s nightmare. Ben had a tumour and it was likely to be cancerous.
“Never in a million years could I have imagined they would say that. It was the most devastating news.
“We were in shock. It couldn’t be real. It didn’t make sense.
“The next day on Christmas Eve we met our consultant and he told us there was a spot free in the theatre if we wanted to operate on Ben to confirm his tumour was cancerous or we could go home and enjoy Christmas and come back afterwards.
“I asked the consultant was he a father and when he said he was I asked what he would do if he was in our situation. He told us he would hit the ground running and so we did and Ben went into surgery and started chemotherapy on Christmas day.
“There was no Christmas in our house that year. We’re blessed that Ben’s two-year-old brother Jack is so young so he doesn’t understand what’s happening but he cries every time Ben leaves to go to the hospital.”
On March 4 2016 a lump was removed from Ben’s kidney. It was the largest cancerous lump in his body but the cancer has spread to other places.
“After 19 rounds of chemotherapy our consultant looked at us and said he didn’t think he could cure Ben.”
Valerie said that her family will fight as hard as they can for Ben and will try every option available.
“Going over to the US, I knew the costs were going to be through the roof but we know what we need to do.
“We need to go as soon as possible because the trial will close. It mightn’t stay open much longer.
The Children’s Hospital need to have the money upfront before Ben can start treatment.
“Faced with many uncertainties one thing is clear to us. We must fight. We must give Ben every chance no matter how far or what the cost. We know treatment in America runs into hundreds of thousands and we need help to give us more options.”
Valerie praised Ben’s school, St. Margaret’s National School in Dublin and his teacher Ms Keegan for being so “encouraging, inclusive and for making him feel so special” on the days he’s well enough to attend school.
“The whole community have come out in force. I never realised the support and kindness people are capable of giving. I’ve been overwhelmed by their support. People have even brought over food and these small gestures have blown me away.”
Valerie said that Ben is annoyed he’s missing Ireland play France today in the Euros 2016 as he has chemotherapy treatment in Crumlin.
“We’re hoping to get him home in time to watch the end of it. He gets so excited at the National Anthem and at the shouting when people score. He loves the Ireland team.”
You can donate money to help Ben’s treatment in the US at https://www.gofundme.com/batmanben