Norah Hayes knew something was wrong with her nine-year-old daughter Alice. Her bubbly, energetic, active, little girl just wasn’t herself. “I started having major concerns back in January,” Norah explains, but getting her concerns to be taken seriously was an uphill battle.
After a bout of Covid in January, Alice’s symptoms were put down to long Covid, her mother explains. “It didn’t sit right with us, to be honest.”
Getting blood tests for her daughter proved enormously difficult. A trip to A&E saw Alice diagnosed with a urinary tract infection and sent on her way. But still her parents felt there was something else going on.
Finally, in April this year, following yet another trip to A&E, Norah was told the worst news imaginable. “I was in the room with Alice when three men arrived to the room and asked to speak to me. I think at that point I just died inside. At that point you just remember walking down a corridor trying to prop yourself against the walls, with somebody trying to find a private room, just those words... your child has cancer.
“Quite quickly, the seriousness of Alice’s situation, and I guess because of the hugely delayed diagnosis, Alice was immediately classified as high risk. Given the absolute seriousness we were told that Alice needed to be told and her sister needed to be told.”
She was diagnosed with stage 4, high risk, neuroblastoma. “Alice is MYCN amplified – she has a genetic switch turned on which brings it from the ordinary horrible, disastrous neuroblastoma to a hugely aggressive, amplified version,” Norah explains.
The financial costs of caring for a child with cancer are huge, says Norah. “I obviously had to give up my job to become a full-time carer, so that’s one income down. Family and friends were funding things here in Barcelona.” Alice is currently in Spain awaiting surgery. “We flew over here on Wednesday. A team of Aer Lingus staff came and met us at the airport at 4:30 on their day off, to try to escort us through, because obviously Alice was travelling with medications and everything else, to try to smooth our way through the airport to get us on to the Aer Lingus flight,” Norah says, underlining the kindness and support the family have experienced.
Alice has had 10 rounds of chemotherapy in Ireland. The family - from Blackrock, Co Dublin - are trying to fundraise (support the gofundme here) to take Alice to Memorial Sloan Kettering in America to undergo further treatment, but the costs are enormous. “It’s a proven path,” Nora says. “Given the huge relapse rates of neuroblastoma, to give your child every chance, you need to get your child enrolled on to a clinical trial.
“If we cannot come up with funding to get her on the Memorial Sloan Kettering trial... then the chances of her relapsing are [certain]. You cannot keep this disease away.
“All the steps have to be taken, but the end goal is there is such certainty that she will relapse if she does not get the last step in the treatment, which is the trial.”