'We are terrified when we see the hospital bills that money will run out'- Batman Ben (5) arrives in the US to take on the fight of his life
'Batman' Ben Farrell has jetted off to America in search of potentially life-saving treatment in Washington.
Five-year-old Ben, from Finglas in north Dublin, was diagnosed with a rare form of cancer on Christmas Eve 2015. He has a stage IV Wilms tumour, which doctors here are struggling to treat, despite 19 rounds of radiotherapy.
Vigorous fundraising campaigns are helping Ben and his family pay for a clinical trial at the Children's Hospital in Washington, costing an estimated €260,000.
The family arrived in Michigan four weeks ago, knowing Ben had progressive tumours and hoping American doctors could provide life-saving treatment.
Ben’s mum Valerie told Independent.ie that all their “hopes and fears” for their young son lie in the treatment.
“Finally the drugs we have been wanting for so long, researching endlessly, fighting so hard for are being administered by our nurse who has come into the room dressed like someone ready to address an atomic bomb.
“The protection she wears is to protect herself from the toxic chemo she is administering to my baby,” she told Independent.ie.
To begin this trial Ben needed to have a biopsy of his right lung to remove the live tumour.
What the doctors do next pushes the boundaries of modern science.
Based on Ben’s genetics and what’s driving his tumour, the doctors will make an innovative decision on how to fight the cancer.
“Ben has been through so much and I just feel like crying, the relief, the fear, the what ifs set in and we feel as well this immense pride.”
Valerie said she’s proud of her young son for going through the treatment for the past year, going through things that would “make most grown-ups want to faint”.
Read More: 'Batman Ben' and the fight of his life
She said she was amazed by the strangers in America who have helped the Farrell family during their stay.
“When people ask where we are from while here, I'm very proud to tell them 'Ireland' and we see a look of shock as it sinks in that we came all this way for our boy to join a trial.
“People have been very kind and welcomed us with great warmth. Everyone we meet has an Irish Granny. Even thousands of miles from home that Irish scenes of warmth and community is helping us. Words cannot describe how grateful we are to have that support.”
Valerie said she lives in the present and tries to fill her days with “normal stuff” and brought Ben and his younger brother Jack to Lake Michigan.
“Ben had a moment where he asked 'mammy when I grow up will I be able to swim like all those big boys or will I still have Freddy?' (Freddy is his Hickman line which is used to give him chemo and other medicines, draw bloods, give transfusions.) Freddy is an amazing asset but it is a big drawback to a five year old boy who wants to play in water.
“Sitting watching these boys swim almost broke me. But, of course my answer was 'yes of course you will Ben'. As much as we try our very best to keep everything 'normal' for Ben and Jack, it is not always possible. But, it is our normal now.”
Keeping busy allows Valerie to take her mind of what is actually happening to her family.
“Getting to this point makes me reflect and that is tough. Some days when I do allow myself to think I am more than shocked that we are here, that this is our life. Most days I don't think at all.”
A huge amount of fundraising has been done to help the family with their treatment in the US, with communities rallying together to support the family.
“I'm proud of our family, friends and communities who have got us this far, as well as the many strangers who have shown so much compassion.
“We are terrified when we see the hospital bills that money will run out.
“Every unexpected stay in hospital costs thousands and with cancer treatment comes a lot of unexpected hospital stays. On this first trip we have already had an unexpected stay which will add thousands of dollars onto our expected costs.”
The family miss their home, family and friends who rallied around them and supported them during this tough time.
“We miss the distractions of visitors at home, the endless stream of family and friends that hold us up. Ben tells me he misses our dog Belle the most and his best friend Jake. We all crave home.
“However, we are willing to stay as long as it takes because while being here we know Ben is getting the best care possible and that is a fantastic feeling. But, it comes with fear. “
You can donate to Ben’s cancer treatment here at: https://www.gofundme.com/batmanben