Sunday 15 December 2019

'Until my baby was diagnosed I never thought kids got cancer'

With 200 people treated for cancer in Ireland each year, parents of patients are not only fighting the disease, but fighting for awareness of these rare illnesses.

Alice Turner, aged two, who has nuroblastoma, at home in Drogheda with parents Paul and Lyndsey, who are hoping to get her into an American medical trial
Alice Turner, aged two, who has nuroblastoma, at home in Drogheda with parents Paul and Lyndsey, who are hoping to get her into an American medical trial
Danny D'Arcy with his mother Aine on his first day at school
Leslie Ann Horgan

Leslie Ann Horgan

August 28 marked a momentous day in the life of four-year-old Danny D'Arcy - his first day as a junior infant. "He was delighted with himself," mum Aine says proudly.

"There wasn't a single tear, he just waved us off and didn't look back." While starting school is no doubt a big day for any child, for Danny, from Clonee in Dublin, it was all the more so. For, just two months previously he was confirmed as being in remission from brain cancer after his second bout of treatment in as many years. 

Danny D'Arcy with his mother Aine on his first day at school
Danny D'Arcy with his mother Aine on his first day at school
Alice Turner, aged two, who has nuroblastoma, at home in Drogheda with parents Paul and Lyndsey, who are hoping to get her into an American medical trial

"The school know but I didn't say anything about his cancer to the other parents," says Aine. "It's probably obvious because he doesn't have any hair, but I wanted his first day to just be about school."

Aine's silence on the subject was something of a one-day rule, however, as she is usually determined to spread the word about children's cancer, and especially this month's Light It Up Gold awareness campaign. Beginning with candle-lit walks in Dublin, Cork and Galway on September 6, the campaign will see 100 prominent buildings across the country, including the Mansion House in Dublin and Galway's Eyre Square, lit in gold to mark international childhood cancer awareness month. The primary aim of the event is to raise awareness about the 200 children who are diagnosed with cancer in Ireland each year.

"We want people to know that children do get cancer," Aine says. "As with adults, early detection and diagnosis is key in treating any type of cancer so we want to get the symptoms out there. Children can't always tell you there's something wrong, so parents need to know what to look out for."

There is a shocking lack of awareness about children's cancers in Ireland says Lyndsey Turner, whose two-year-old daughter Alice is being treated for neuroblastoma.

"Before it landed on my doorstep, it never occurred to me that kids get cancer," Lyndsey says. "The rarer a cancer is, the less you hear about it, but when you are in St John's Ward in Crumlin Children's Hospital it doesn't feel that rare. The ward is always busy with babies right up to teenagers. There's a lack of public awareness about these diseases - it makes no sense when our children are the future."

Danny was two years and nine months when, in June 2012, he was diagnosed with medulloblastoma, a form of brain cancer which mainly affects the under 10s. "For three to four weeks before that he'd been vomiting and lethargic," says mum Aine. "One day, his co-ordination went and he couldn't walk. I took him to A&E expecting just a severe ear infection. The staff in Temple Street knew straight away."

Two days later, the toddler underwent surgery to remove a brain tumour the size of an orange. The operation took 10 hours and left Danny unable to walk properly and with damage to his speech and hearing.

"He began chemotherapy eight weeks later at Crumlin," says Aine. "There were six rounds and three rounds of stem cell transplant. It's a long walk from the front door of Crumlin to St John's oncology ward. You have to try to pull yourself together. I couldn't be upset for Danny's sake. Once you are OK with what's happening your child will be OK too. They are so resilient."

In February of this year, Danny was six days off being a year in remission when routine tests showed his cancer had returned. "It was a shock to be told that the cancer was back, I had to get the oncologist to ring my husband Brian [who had begun the family move to Australia] and ask him to come home," Aine says. "There were four more small tumors and Danny had to have another 10 hours of surgery to remove them. It wasn't as successful, so he went back into theatre. They got it all the second time." Danny went into remission again on June 26.

For Alice Turner's family, the prospect of a relapse doesn't bear thinking about. The Drogheda girl was just 15-months-old when, in December 2013, she was diagnosed with high-risk neuroblastoma - the same cancer as Tiny Dancer Lily-Mae Morrison.

"She'd had a few colds and chest infections but it was never anything that worried me - kids get sick," says mum Lyndsey.

When she was diagnosed the same month, "she had surgery to remove the tumour on the Friday before Christmas. It was a six-hour operation - the tumour was the size of a grapefruit. On Christmas Eve they told us that it was neuroblastoma. The surgeon was confident that he'd gotten it all out but there were more tests to make sure it hadn't spread. We went home that day not knowing what we were facing into - it was the worst Christmas, just waiting."

Alice Turner, aged two, who has nuroblastoma, at home in Drogheda with parents Paul and Lyndsey, who are hoping to get her into an American medical trial
Alice Turner, aged two, who has nuroblastoma, at home in Drogheda with parents Paul and Lyndsey, who are hoping to get her into an American medical trial
Danny D'Arcy with his mother Aine on his first day at school

Though Alice's cancer was caught at an early stage, she tested positive for a rare condition called MYCN amplification which made the disease more aggressive. That meant that she needed a full 18 months of treatment, including chemotherapy and a bone marrow transplant.

"At the moment she is having radiotherapy in St Luke's," Lyndsey says. "She needed 14 sessions, each under general anaesthetic. The next step is of immunotherapy. It's a relatively new treatment but seems to be making a real difference."

Neuroblastoma has a 70pc relapse rate, and if it does recur the treatment options are very limited. The Turners will try to get Alice accepted into the same American medical trial as Lily-Mae Morrison in the hopes it will help prevent her relapse. In the meantime, Lyndsey has turned her attention to raising awareness, adding some buildings in Drogheda to the Light It Up Gold list.

The campaign, which now runs in 15 countries, was originally begun in America by Tony Stoddard, who lost his five-year-old son Cole to cancer in 2012. The initiative was taken up in Ireland last year by a group of parents of cancer patients, some of whom went on to launch the Childhood Cancer Foundation in February of this year.

Aine D'Arcy is one of the directors of the new charity. "There are nine parents involved in running the Foundation. Our primary aim is to create awareness. Ultimately we want the gold ribbon to be as recognised as the pink ribbon.

"The second aspect is to fundraise and lobby for services that are not available in Ireland. In terms of medical care, Crumlin is truly a centre of excellence. What differs is access to complementary services such as play therapy. There are some supports in Ireland but some are missing."

Lyndsey Turner says that the charity also provides vital supports for parents such as herself. "I heard about the Childhood Cancer Foundation from other parents whose children have cancer. It's great to be able to talk to people who understand exactly what you are going through and who can help you understand what questions you should be asking when you are bombarded with information. We're all a great support to each other."

For information, see www.lightitupgold.ie or www.childhoodcancer.ie.

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