Can you tell me about when Aiden was first diagnosed?
He had been poorly for about a month and a half prior to Christmas. His legs were hurting a lot, and the doctors initially thought he’d broken one of them. By late October, he was getting paler and paler and his nursery were telling me that he was just falling asleep as soon as he got there. We took him back to the doctors and, three times, they said it was a viral infection. On the final time, they said to bring him back in seven days if he wasn’t any better, so we took him back after that week. When we took him back, a different doctor took one look at him and told us to sit down. He didn’t say anything else and phoned the LGI and said down the phone: “I need you to see this boy. He doesn’t look like he’s got a red blood cell in his body”. We got to the general ward in LGI and the nurse looked at him, whipped him out of my arms and rushed him round to a ward bed. The doctor came round and said: “we’re going to take blood tests, we’re not sure what’s wrong. It’s either a bone marrow infection or something more serious”. We thought: “oh, it can’t be anything more serious. He’s only five, and he’s still running around”. It was a long day, and by the time it came to 2 o clock in the morning, they said they were going to put us on a ward- but they didn’t say which one. We woke up the next morning to find ourselves on the cancer ward, surrounded by all these other children around us- we really didn’t have a clue what was going on.
What date was this?
That morning was the fourth of December. We just plodded along for the next two days, having tests. Then it came to the sixth of December and we got taken to the little room outside the ward. Dr Bob looked at us and said: “it’s a form of cancer, it’s leukaemia”. The whole room- we had Aiden with us- went deadly silent. The only thing I said to Dr Bob was: “are we going to lose him?”. He said: “there is a very rare chance, but yes, you could”. And from then on, that was it. We just had to fight for him.
So that was December 2014?
Yes, so we stayed on the ward for four weeks with Aiden, who was on a high dosage of steroids. We got out the day before Christmas Eve, thank goodness!
What has happened over the last two years?
Aiden started school in September 2015. He missed all of the rest of nursery because of consistent infections. From October 2015, we were in the hospital every ten days with infections so we had a really bad Christmas of that year. It didn’t really get better until March 2016. The doctors think he’s sensitive to the chemo, so I’m expecting us to be in hospital again a lot this winter. As for school, he has been in quite a lot. I think he got 65%. The school have been brilliant, and Candlelighters have done so much to help.
What did Candlelighters do to help support your family throughout the diagnosis in December 2014?
If you go on the ward, you can see that they do so much for both the children and the families. I don’t think we would have survived without the laptop and DVD player especially, because it was how Aiden communicated with his siblings at home. We didn’t want to Amy and Jake to come in as we knew it would be upsetting for them, so that technology was how we communicated with them- I don’t know what we would have done without it! We also got a Christmas grant from Candlelighters to help cover Christmas costs, and went to their big children’s Christmas Party in December at the Royal Armouries. They have also taken my daughter under her wing by bringing her to the siblings group. She went to Scarborough the other week and came back covered in sand!
How do you expect this Christmas to be?
If it goes like last year, we’re going to be in and out of hospital with infections but, touch wood, we’ll have a quiet Christmas at home. To keep us going, we’ve planned a few trips and the one thing that keeps Aiden going through everything, including the needles, is the fact that we’re going to Disneyland when he finishes treatment. That’s our end point there. We finish in February 2018 and we’re going to Disneyland in October. As long as he’s alright, he’ll stop being spoilt at that point! And we’ll try to get back to normal life after that.
Can you fundraise this Christmas to help us support families like Nicky and Aiden’s? From Christmas grants and the children’s Christmas Party to siblings groups and investing in equipment for the ward, there are so many ways we can help. But to do this, we need your help. Get your fundraising pack here. We’d love to hear about your ideas so please do get in touch with the Fundraising Team on 0113 322 9283.