Why funding is integral to a child’s care

Irish parents are supporting Light It Up Gold, to raise funds for improved cancer facilities

Tue, Aug 27, 2013, 01:00

Almost 200 Irish children are diagnosed with cancer each year and while their parents are undoubtedly devastated by both the diagnosis and the reality of caring for a sick child, some families have the added burden of raising funds to help improve hospital facilities.

September is Childhood Cancer Awareness month with gold its official colour. Last year, an American father, Tony Stoddard, lost his son to cancer and despite his grief launched the Light It Up Gold campaign which sees landmark buildings across the world being lit up in a bid to raise awareness of the plight suffered by children with cancer. During the first week of September, many recognisable buildings in Ireland will be following suit and lighting up gold.

Gillian Smyth is one of the parents responsible for organising the Irish involvement. Her son, Dylan, was diagnosed with a brain tumour last year and while the care he received in Ireland was second to none, she believes the facilities are severely lacking. “Last summer Dylan and I went to visit his dad in the US,” recalls the Kildare woman. “He had been complaining of headaches and nausea in the weeks leading up to the trip but the doctor thought it was a tummy bug.

“We flew out as planned to Chicago last July but he was really sick on the flight and as soon as we arrived, we made an appointment to see a paediatrician. She gave him a good look over and said if he didn’t feel better in a few days, she would order a CT scan.

“But he continued throwing up so we brought him to the local emergency room and they did a scan which revealed he had a 4 cm tumour on his brain.”

Shocked and devastated by this news, Smyth went with her son as he was rushed to Lurie Children’s hospital where he underwent an MRI scan a few hours later.

“It was all so shocking but everything happened so fast,” she recalls. “After the scans, we were told that he would have to have surgery the following day to remove the tumour. This took eight hours and afterwards, he was in an awful lot of pain.

“But he was monitored constantly and started on physiotherapy and occupational therapy the next day. It took a month for the pressure to subside on his brain and he also had to undergo further surgery. Tests were done on the tumour and it was confirmed that it was cancerous so he had to have chemotherapy and radiotherapy.”

Difference in hospitals
In October they returned to Ireland and Dylan started chemotherapy in Our Lady’s Children’s Hospital Crumlin (OLCHC) but both of them were appalled at the difference in the two hospitals.

“During the month in Lurie, Dylan had a room to himself and there were only two patients to each nurse so the care was amazing,” she recalls. “But the first thing I noticed in Crumlin was that the paint was peeling off the walls. It seemed really grotty everywhere and although the staff were great and I had full confidence in their professional ability, even Dylan commented on the difference between the Dublin hospital and the one we had just come from in America.

“It struck me that it was very sad that our children, who were suffering enough with cancer, should have to spend so much time in cramped conditions.

“There has been a lot of money raised for the oncology ward already. We went back to Crumlin in June of this year and Dylan was placed in the renovated [St John’s] ward which was really lovely. He actually said to me, ‘This is what a proper hospital should look like.’

“So when I heard about the Light It Up Gold campaign, I thought it would be a great way to raise awareness about childhood cancer and also raise funds to help develop facilities in Crumlin which is where all Irish children with cancer go for treatment.”

Gruelling treatment
Karen Neburagho has two daughters – Kim (20) and Eábha (8). Her youngest was diagnosed with leukaemia in 2009 and underwent two and a half years of gruelling treatment. She is now doing really well but her family want to highlight what she went through and help raise funds for the oncology ward in Crumlin.

“When I was 23 weeks’ pregnant with Eábha, I was admitted to hospital with severe pre-eclampsia and she was born a week later weighing one and a half pounds,” recalls Neburagho. “Having come through that ordeal, my husband, Toju, and I thought our nightmare had ended but on Kim’s birthday in September 2009, Eábha spent the night coughing. I took her to the GP the following day who diagnosed a viral infection. But over the following two months we were back and forth several times as she remained very pale, had lost a lot of weight and was always tired.

“Then one night, she woke at 4am screaming in agony and holding her leg. I gave her a painkiller and we held her until she fell asleep. The following day I took her again to my GP who still thought it was something viral but we went to Crumlin and after bloods were done and the orthopaedic surgeon reviewed her, they diagnosed fluid on the hip and operated that night to reduce it.”

A week later, she was limping again, was very constipated and extremely pale so we went back to the hospital and they diagnosed severe constipation as a result of the general anaesthetic she had received the previous week. They were about to do some bloods and Eábha got upset so they didn’t bother; in hindsight they should have insisted.”

Two months later, Neburagho was beginning to suspect that something more sinister was the reason behind Eábha’s illness.

“On the 19th November, I took Eábha to my GP again and insisted on blood tests as I had started to Google severe anaemia, constipation and any other symptoms she had, and leukaemia kept flashing back at me,” she reveals. “She was referred to hospital for bloods and we were eventually told that they suspected Eábha had leukaemia.

“I was not shocked as I had suspected it, but all my family sobbed as they held Eábha. I was very practical and the following morning we were met by a team of new faces who were very reassuring when telling us the success rates they had of curing Eábha.

“In February of last year, she finished two and a half years of treatment and is now doing great. Eábha spent most of her time in the old hospital and although the treatment was high standard, the facilities were poor.

Best facilities possible
“Our hope for the campaign is that newly diagnosed parents do not feel alone; that they know other children have and still are going through treatment and surviving. And we want to highlight the fact that our children who are fighting horrible illnesses deserve the best facilities possible.”

Joe Quinsey, chief executive of The Children’s Medical and Research Foundation, says a lot of work has already been done on the oncology ward but he welcomes the move by parents to raise further funds and awareness.

“Thanks to the public’s generous response [to the Fix Crumlin appeal], desperately sick children will have fit-for-purpose facilities in a bright, modern, healing environment,” he says. “Their families and carers – most of whom have had to spend long periods basically living in the hospital – will also have more comfortable, more practical and relaxing facilities. The hospital’s staff will be better able to deliver the world-class treatment these children deserve. That’s the legacy of the public’s generosity.”

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