"I was going to do it for 12 years to begin with, one for each year of his life. Then, I thought I’ll do it for 24 years and the years ticked by and I am still supporting Latch.
Latch has become my hobby, as well as a therapy. My sister, Mary, and her husband, Vic, raised £900 for the charity when they went in the sea on Boxing Day in 1995 after Paul died that year on 18 December. It was her idea to set up the West Wales Latch branch following their fundraising dip.
West Wales Latch branch
The branch is a group of people who have either lost children to cancer themselves or known children who have died of it. We don't necessarily talk about what happened to the children, but it connects us, and we all have our own story.
I normally come up with the ideas for raising money. We’ve had raffles, bottle sales and coffee mornings. We have also done sea dips, fun runs, and held concerts and dinner dances.
There was a local band, craft stalls, massage, face painting, egg collecting for the children, and even a bouncy castle. All together, we have raised close to £500,000.
We also give talks about Latch in schools and for other organisations, such as Young Farmers’, Rotary and Lions Clubs. We also pick up cheques on behalf of Latch when people have fundraised for them and explain how the money they have raised is used to support children and their families.
I enjoy the fundraising that our Latch group does. The treatment for the type of cancer that Paul had has improved. Life has been made easier for children like him, and their families, because of all the things that Latch does.
I am a qualified nurse, but I’d never nursed children as part of my career and when Paul was diagnosed, none of us realised what lay ahead for us.
Getting diagnosed
There’s nothing much that would slow Paul down. When his brother and sister had chicken pox, for example, he only had a few spots. He was an amazing character who loved sport, including, swimming, rugby and tennis.
One day, I looked up our cul-de-sac and saw he wasn't playing tennis like he normally did with his friends. He was sitting on the curb, watching everybody else. He said he was tired. The tiredness went on to the next day. I examined him when we had a tickling session and he had tiny pea like nodules under his armpits and in his groin. The GP came out and was concerned it was something nasty. He told us to go to Glangwilli Hospital to have some blood tests.
Paul’s blood count came back deranged. That means the red cells, white cells and platelets are out of proportion. When the consultant of the children’s ward told me he suspected Paul had leukaemia, I was in shock. I rang my brother-on-law who said he’d be there right away to take us to University Hospital Llandough, where Latch used to be based. Then I walked to the intensive care unit, where I was working at the time, and just broke down. I was sobbing and couldn't talk. I don't know how long I was like that for. I got myself under control again and went back to Paul in the day room.
At University Hospital Llandough, they did a bone marrow test which confirmed that he had acute lymphoblastic leukaemia. That's how it started.
Treatment and support from Latch
We stayed in hospital for six weeks while Paul had daily chemotherapy through a port in his chest. He had this device under his skin, rather than a Hickman line, a tube in the chest, because of his swimming and rugby.
Latch were there from the beginning but I didn’t know that they were at the time. My head was so full of what was going on with Paul.
But I remember sitting next to Paul and seeing a plaque on the oxygen saturation monitor saying that it was donated by Latch. The fold up bed I slept on was also paid for by them and the chemotherapy pumps were.
I’d go to the Latch Home from Home Accommodation to have a shower, use the washing machine and have something to eat. It was a nice walk, perhaps 400 yards from the ward, so it meant I got out and had fresh air. It helped to get away from the ward and have a few minutes to myself. When Paul was well enough, he would come to the Latch accommodation too. It was important to be just the two of us. Or if Catherine and Stephen were there, to be a family again, away from the ward.
We had a Latch Social Worker called Kay. She helped me to fill in forms for Carer’s Allowance and, on a Sunday evening, she’d drive Stephen and Catherine home for me. I don't know if she used to do it in her own time. It was an hour and a quarter drive. It helped me, especially as the pressure of Paul’s illness was having an impact on my marriage to his dad, Neil.
Paul was so brave and mature. He’d get so sick from the general anaesthetic he had with his lumber puncture. He’d say: “Mummy, I can’t bear this, I would rather not have anaesthetic.” From then on, his lumbar punctures were carried out under local anaesthetic.
At home, Paul was on oral maintenance chemotherapy. He went into remission and started secondary school. The Latch Community Nurse went in to the school and spoke to his teacher and the class he was going to go into. It helped for her to explain to the children that Paul’s leukaemia wasn’t something they were going to catch. It was something that happened to him and that they must treat him gently and look out for him.
Palliative care and bereavement support from Latch
Paul turned 12 and was doing well, getting back to playing cricket. However, when we went on holiday, he was tired again and after blood tests, we found out that he’d relapsed. He then had more chemotherapy. One day we saw the consultant and he said to Paul: “We're not going to be able to make you better. We want you to go home now and enjoy your life as much as you can.” Paul stood up and said: “I am going to get better, and I'm not going to leave here until you make me better.”
We went back to Llandough Hospital for more chemotherapy. Latch had refurbished the children’s oncology ward. They turned the long Victorian ward into a light and airy 10 bed unit with a conservatory, play room and air conditioning. There was a Latch Play Worker on the ward. Seeing her gave Paul something to look forward to.
Paul, sadly, got weaker and weaker. We brought him home for palliative care. He died in my arms, with Stephen and Catherine and his dad in the room. I didn't cry because it was a relief to not see him suffer anymore. I had to put on a brave face for his brother and sister.
Latch gave me £100 after he died. It contributed to making all the phone calls I needed to make to tell people that he had died. I was very naive at the time, and I didn't know why, but, every month, for a year, Kay would come and visit. She'd say: “Are Catherine and Stephen home from school?” We’d sit and talk for an hour about what we were doing and how things were going. It was easy to talk to her because she'd known Paul and all of us.
I can never forget all the children that we met in the hospital. I knew that not all of them made it, but I just wanted to think they all got better.
Supporting Latch today
I don’t share my personal story when I go into schools to talk about what Latch does, but if someone asks me, I’ll say that my little boy died of leukaemia. I tell them what the money they have raised does for Latch and how it benefits the children undergoing treatment and their families. It feels good to be able to give back knowing that, until they find the reason for the cancers, there will always be children having treatment.
I’ve felt proud to see Latch grow over the years. I’ve taken groups of people to see the oncology ward at the Children’s Hospital in Cardiff, where Latch are based now. We saw the LATCHmosphere which projects wonderful lights and sounds, helping children (especially the younger ones) having MRI scans and x-rays. It’s absolutely amazing. I saw what Paul went through and am glad to see that things like this are made easier for children now.
If children see their parents and siblings struggling, then it’s going to affect their lives. So by making the whole picture a little bit more bearable, Latch makes it easier for children living and being treated for cancer. Thank goodness there is Latch. They listen to relatives, children, nurses, and doctors, and are there, ready to help.
Next, our West Wales Latch branch are hoping to host a dinner dance to raise money for the charity. I hope to see Latch growing and moving with the times, as it does. Through all Latch does, I hope that one day we can find the reason why children like Paul become ill with cancer and can successfully treat them all.”
