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Changing the lives of children with cancer

Following the announcement of Rory McIlroy’s €1.2m donation to the Cancer Fund For Children for a new centre, Una Brankin speaks to two parents deeply grateful for the charity’s ongoing support and facilities.

Rory McIlroy and The Rory Foundation recently donated €1.2m to the Cancer Fund for Children to help in the building of a new therapeutic short break facility in Co Mayo, modelled upon, and named after, its counterpart Daisy Lodge in Newcastle, Co Down.

Highly successful since it opened its doors in 2014, Daisy Lodge is now operating at full capacity and has a waiting list, with 50 families from across Ireland waiting to use the service at any given time. The new facility in Co Mayo will help to relieve pressure on that waiting list and will provide Cancer Fund for Children with the necessary base to roll out its specialist services, which they have been developing for more than 40 years in Northern Ireland.

‘The support is amazing, they know what you go through’

Henry Thompson was only three when he was diagnosed with Acute Lymphoblastic Leukaemia (ALL) in December 2015. He is the eldest child of Newtownabbey maths teachers Ian and Helen Thompson, who have two younger boys, two-year-old Oliver and one-year-old Charlie. The family has since benefited from a range of support from Cancer Fund for Children, including community support at home, therapeutic short breaks at Daisy Lodge in Newcastle and the charity’s self-catering cottages in Coleraine. Ian says:

I was at the Irish Open last week and I felt like shouting over to Rory: ‘Thanks for all the money’. I know people say that when you’ve so much money you might as well give it to charity, but Rory does so much for the Cancer Fund for Children and the services really have been amazing for us.

Our son Harry started getting tired and saying he had a sore tummy at about three-and-a-half. He was also getting a lot of bruises on his legs, which we put down to the rough and tumble of nursery school. But we became concerned and took him for blood tests. The A&E doctor examined him and found that his spleen and liver were swollen. He had turned a yellowy colour and had a rash, too.

The doctor just turned and looked at us, and we knew it was something bad. My uncle had leukaemia 20 years ago, so I’d a fair idea of what was happening, but we were still shocked when we got the diagnosis. You just think: ‘How on Earth can this be happening?’

My uncle is fine now, but he had a different type of leukaemia and Henry’s isn’t hereditary. The exact cause is unknown. Henry was admitted to the Royal Victoria Hospital right away for five weeks of intensive chemotherapy in December 2015. We were so numb — that got us through. We just went into survival mode.

We had a five-week old baby and Helen had to wean him off breast-feeding, because siblings weren’t allowed into the haematology ward. She was all over the place emotionally.

I took time off work (Ballyclare Secondary School) and stayed in the hospital, and Helen stayed with her mother, who lives near the Royal. Our minister, from the Trinity Reformed Presbyterian Church in Newtownabbey, brought us a packed lunch every day. Our faith helped us in a big way; we believe God is in control of things.

We got Henry home for Christmas Day and he was doing okay, but at one stage he went to the loo and collapsed. The treatment was rough on him. He’d retch and vomit, and he had mouth ulcers. He would still try and eat for us, even if he was physically sick.

His skin got rough and peeled a bit; it wasn’t very nice for him. He was always a sensitive wee thing, but chatty, so we were concerned when he went quiet. He’d sit in the hospital bed, very pale, with only his eyes moving, and his heart rate dropped pretty low, to 45 beats a minute, because of the steroids.

Other times, he’d do jigsaws and colour-in with us. He’d go quiet when the nurses came in but, God love him, he trusted that we were doing the right thing for him.

The first phase of chemo was intense — they were pushing it to the edge to try to get rid of 99.9% of the leukaemia. The second and third phases were a week in and a week out of the haematology ward, and the fourth was more intensive chemo, which was difficult for him again, but not as bad as the first time, when his body was filled with leukaemia.

We give him a liquid form of medication at home now. His immune system is suppressed, so he can’t go to the Boys Brigade or the Scouts, and he can’t attend school if anyone is sick, due to the risk of infection.

His hair has grown back and we took him for his first proper haircut recently. He told the hairdresser he wanted it ‘the way Francine did it’ — Francine being the therapist who shaved his head during the chemo. He has a good sense of humour.

He’s now categorised as low-risk. We were delighted with that, but we always have the worry about a relapse, and the infection risk. We bought a batch of hospital hand sanitisers and put them everywhere he frequents, from school to relatives’ houses. Henry knows he was sick and that he had a problem with his blood. He knows he’s a bit different and that he always has to wash his hands before he eats, and that he can’t go to the local park or he’ll get sick.

So, it’s amazing to have the play facilities provided by the Cancer Fund for Children. The first time we went to their wee park in Newcastle, our second son, Oliver, had never been in one before and didn’t know what to do. That itself would have broken your heart.

Then, half an hour later, he’s delighted and having a great time, and he said: ‘Dad, are we in heaven?’

The support is amazing. Meals are made for you; the people understand what you are going through. I’d seen Rory opening the place in the paper before Henry was diagnosed, so I was aware of it. But you never think it’s going to happen to you or your family.

Henry’s doing well now and his brothers are in good health. They have an increased risk — Oliver had a nose-bleed recently and I thought, ‘ah, no’. But he’s okay.

Some people turn against their faith when something like this happens, asking how God could let it happen. But Henry trusts in us — he takes the medicine we give him — and we trust in God.”

'They provided an experience you would not get elsewhere'

Katie Toland was diagnosed with acute lymphoblastic leukaemia (ALL) in 2013, when she was just six years old. Her family, who are from Lurgan, have benefited from a range of specialist support from Cancer Fund for Children. Now 10, Katie particularly enjoys short breaks at the charity's therapeutic centre, Daisy Lodge, with her mother, Caroline, a school supervisor, stepfather, Martin, a store supervisor, and her siblings, Shannen (16), Kevin (13) and six-year-old Charlie. Caroline says:

Katie had a really bad nosebleed and we couldn't get it to stop. She was really pale as well, and I also noticed a large bruise on her arm. I just knew she wasn't herself, so I rang my doctor on the Friday, but he didn't seem concerned, and said to leave her over the weekend and see how she was.

At the weekend, then, I noticed she had come out in a rash, so I was really worried about her and decided to ring the out-of-hours doctors. They immediately sent her to Craigavon Hospital for blood tests.

I knew something was wrong later that night, when there were all these empty beds on the ward and they brought us into the side room.

They took my mother and I out of the room - my husband was working at the time - and that's when they told us Katie had ALL.

It was devastating and of course, we started crying, but when I asked the doctor, 'Can you fix her'?, he said, 'Yes'. So, I decided, 'Right enough is enough; let's fight this and get on with it'.

We got referred to the Royal Victoria Hospital and Katie was in for treatment for three to four weeks. The reality really hit us when we arrived on the children's ward and saw all these kids with no hair. That brought it home.

It was a tough time for all the family, especially Katie's brothers and sister. We decided to be open with them and tell them, because I knew I was going to be up at the hospital with Katie and wouldn't get to see them.

Katie's brother, Kevin, who was 10 at the time, found it quite hard because he was sick with a tummy bug before Katie fell ill, and he felt guilty because he thought he had made Katie sick, too.

The Children's Cancer Fund arranged a short break for us for the first time over Easter. We had lovely weather and stayed for a week. It was a different world at Daisy Lodge, like an escape from everything. We were under so much stress before, but we didn't have to worry about anything there. We unplugged our phones and totally disconnected with the outside world.

When you go to Daisy Lodge, there's nothing to worry about. You can relax, you don't have to worry about cooking dinner, the kids have plenty to do and they can keep themselves entertained and play with other children.

We got to meet other families who were going through the same thing, and it was just nice to sit around the fire and talk to them. We lost a lot of our friends during Katie's treatment, because they didn't really relate to what was happening and perhaps didn't know what to say to us. Thanks to Cancer Fund for Children, we made lots of new friends.

Katie got the all clear in August 2015, and thankfully everything is all good. You do worry from time to time when she gets sick; you think the worst, but I think you learn gradually to get back to normal and to relax a bit.

The Cancer Fund for Children have done so much for us as a family. They've provided us with an experience you would not get anywhere else. We are so thankful for their support."

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