But it just became clear in your mind that having a cold is different from having the flu?

It is, and I do know that before but it was important that they told us that it was, that they made clear that it was more than a cold. Yeah. And they, and by calling it Influenza B’ it made us realise that it was, it’s a, it is a, it’s something in and of itself which is different from it just being a common cold. And, and there’s something you don’t, I mean, you don’t get told at school, you don’t, or maybe you do it’s so long ago, you don’t remember, you don’t’ know these kinds of things unless you’ve got a background in medicine perhaps and I mean I knew as a joke that they’re different but I didn’t actually really know, you know, Oh, they’ve got a cold, or, They think they’ve got flu. You know, I understood that flu’s more serious but not, I still probably don’t really know why or how. And so although I know that it can develop into things that are much more, much nastier for children on treatment. So yeah, it was important they, they gave it that name and because it made us realise I suppose that it’s not something, it’s not just an everyday cold.

Yes I think that, I think that particularly perhaps when I was a child and my generation more I think antibiotics were perhaps given more freely. I think I often remember being on antibiotics all the time when I was little and I was so frail so I wonder if, if sort of standard practice for giving out antibiotics has probably changed over the years since I was a child anyway but I, we do worry about Alfie’s long term health and whether antibiotic resistance is going to affect him later in life. But it’s the worry that’s outweighed by keeping him alive, you know, he’s getting him through this treatment safely and so we don’t have a choice.

And also we don’t, in the winter months particularly, but just generally, we don’t take Alfie to for example, children’s play centres. We don’t take him swimming, to public swimming pools. We don’t go on aeroplanes. Anywhere, any sort of very busy public place, particularly that’s enclosed, which is why in winter it’s harder. Particularly that’s got lots of children in it. We’re very careful. We were more careful at the beginning. You know, we’d go into a café or into [supermarket] or something and sit, sort of thing, ahh, I, and you have to make a call on it, is this too busy to be in here, you know. What’s the risk? And you see someone coughing, Ohh, get him out, get him out. Whereas now, we’re, we’re much more used to it now and you kind of sense whether you’re OK to be somewhere or not. And if I’m at swings and Alfie’s sat beside some kid that’s got a rotten cold and just looks awful, we leave, kind of thing. It’s the same with chicken, the risk of chicken pox and that kind of thing with, where we just have to be very careful.

So, yeah, it was really tough, yeah, it was difficult time. Yeah, it really was but as I said, we were lucky to have the support we did. I’ve, I really don’t know how we would have done it without the support of our friends and family. It was, just logistically even let alone emotionally, [laughs] it would have been really, really hard. And being, you know, if Alfie became ill which he often was, like his immune system was much more suppressed than it is now in the drop of a hat we would get a temperature and it would just be like, Right I’ve got to go hospital immediately, call my husband. He’s in a meeting at work and, you know, all these things. You know, packing your bag, having a new born baby and, yeah, it was, it was a difficult time.

It was really hard. And, I mean, from a practical side of things it was hard because I was trying to breastfeed my younger child but then I was in hospital and so, you know, even just thinking about that became a major problem. You know, how am I going to get to my child to do this kind of thing. So I gave up on breastfeeding earlier than I would have liked to and, yeah, it was really stressful. I felt like I didn’t have a chance with my younger child to do any of the things I did with Alfie so, which actually seemed indulgent when I had Alfie ill. Like, you know, going to baby massage classes or going for a walk around the park with some friends, you know. Didn’t do any of that when [youngest son] a new born baby. I mean we were just in hospital all the time. And I was exhausted [youngest son] was a really colicky baby. I think he picked up on the stress of it all definitely and in hindsight it was, and he cried literally, from the moment he woke up in the morning until the moment he went to sleep, he just cried all day long [laughs]. And so, yeah, it was, it was really, it was hard.

So we’ve gone through the motions as per normal. In the hospital we’re in our own room and having these various IV antibiotics. And I remember a nurse came in with a, a mask and half of me was completely alarmed. What’s going on? And she said it’s too late now, but I’ve got it anyway but he’s, we’re wearing these because he’s got influenza B. And we sort of said, Gosh, because influenza sounds so much more scary than the flu for some reason. It’s some psychological thing. I’m not, particularly influenza B, you know, something as a, as a layman you don’t understand what on earth that means or I didn’t even know there were different types of flu that you could get. I’d no idea the implications or whatever.

Was it explained to you?

No, not at the time because it was no, not right then. And we, but we said Is this something like really serious? And I remember our nurse saying, No. You know, it happens sometimes, kids on treatment and you, you know, it’s something that you’ll work through you know. It’s good that we know what it is and we will look, you know, that’ll be a, a path that we go down now. It’s good that we’ve got a diagnosis of something.

Do you have a view as to when the antibiotics should be prescribed? In general, we’re talking about a flu type situation?

I’ve always had the opinion that because leukaemia is a serious illness. I’m very open to antibiotics. I think that they should be given as early as possible in my opinion because I know, I know from my rudimentary knowledge of medicine that it, they can something like the flu can lead to something much more serious in a childlike Alfie. And I know of other children that have had things develop into pneumonia and other illnesses which are worse I don’t know if flu directly can be, you know, what I mean, like I think that it’s really important to give, I’d never question them giving antibiotics even though I know that you should limit the amount a person, one has of antibiotics. I know that you shouldn’t just take them willy-nilly but, and I’ve always been very careful about completing courses and giving them the right dosages, the right times and try to be as conscious, conscientious as I can be about take, giving them correctly when I’m giving them from home. But I know other parents that have, that are resistant to giving antibiotics and would rather limit them as much as possible. But I think for Alfie it’s important that he’s given them, if he needs them then we, he should have them like immed, as quickly as possible.

I know, it’s a good point. I mean, it’s just the way you divide your, I guess the way you divide trying to do what’s best for your child and my children doing what’s best for Alfie is not, is the opposite of doing what’s best for [youngest’ son] I suppose. I mean, for [youngest’ son] for, yeah, you’re right, for Alfie we give them I mean, he’s never had a bacterial infection so all the times that we’ve been into hospital with a temperature and going on these two very high, I remember the nurse at the very beginning, very quite irresponsibly describing them as being like bleach. So super hard core antibiotics for Alfie, he’s never actually needed them but he’s never actually had a line infection or some really, really nasty thing going on. But he’s been exposed to tons of these antibiotic, well these antibiotics repeatedly as a cover for just in case he’s had a nasty infection. And they wait for the blood culture to come back which takes forty eight hours and then we know, Whew, OK, that it wasn’t something really serious and he comes straight off them. But we’ve never questioned going on them. Whereas with [youngest’ son] you’re right, I think I weigh up whether he needs them and it’s very unlikely that he does just like Alfie. But we don’t, he’s not at risk in the same way that Alfie is. You do, you have to weigh up the risks and with [youngest’ son] he’s a healthy little boy and if it’s very unlikely he needs antibiotics then of course we’re not going to give them to him just in case there’s a five percent chance and he’ll be fine anyway. Whereas with Alfie if there’s a five percent chance he has got a bacterial infection we’ll almost definitely give them without, unquestioning, you know, we will give them because the implications are so different.

Prior to you taking him to the hospital when he had the, when he was diagnosed with influenza, how was he feeling, what were the symptoms? What did you notice?

A high temperature. So I think his temperature went up to about, at that time it was about 39.5. Really floppy, he, he was, I remember he’d fall asleep and, and he didn’t have a temperature. And we were actually at my father-in-law’s house. He fell asleep and then woke up and seemed quite dopey and then went back to sleep again. And that’s a really, it was a really clear sign that he wasn’t well because normally he’d never do that. He wouldn’t go to sleep, wake up, and then immediately want to go back to sleep again during the day. It’s, I mean, he rarely sleeps during the day anyway, so it was very out of character for him to do that.

And just things which, it was like we mentioned, are instinctive like he smelled different. He does smell a bit different when has a temperature. Parts of his body aren’t hot but other parts are. Like his feet are always very hot when he has a temperature, whereas sometimes I can’t feel it on his head if I touch his head. But his tummy and feet are the giveaway when he has a really high temperature. They’re the bits that you can really feel hot, that are, are weirdly hot

Was he coughing?

Yeah, he was coughing and had a cold I guess they were the main symptoms that, which to be honest, quite often when we go into hospital they’re the symptoms he has because we’ve been fairly fortunate in that he’s never had a very serious infection like a, like a line infection or something. It’s always been something viral rather than bacterial. So, sore throats, coughs, colds, they’re kind of the symptoms he usually has.

They’re amazing. Very communicative, as soon as any new information comes in about Alfie they come and tell you immediately and so the channels of communication was, you always trust that, you know, everything that’s going on. Well, I do feel really lucky that we’ve got this oncology, I think she’s Alfie’s oncology nurse specialist. She’s called [nurse name] and she kind of, she seems to be the person that knows everything. So more, almost more than the doctors and our consultant who we see regularly but isn’t always there. Whereas [nurse name], I’ve got a phone number for her. I can ring her anytime kind of thing and she seems to be the one that kind of who knows all the information that’s coming from all these different places from [hospital], from the doctors, from the nurses. She’s the one that kind of collates everything and, and she’s brilliant and is always on top of it. So that’s been a big source of reassurance for us.

I do think from my experience the medical profession is very transparent. It’s brilliant. I remember saying to our consultant on about day three after Alfie’s diagnosis Is there anything you’re not telling us, you know? Do, you know, things about him in, you know, his condition that you’re withholding or that you’re waiting to tell us until, you know, for sure or. And he said, No, it’s your child and it’s your information. It’s not, it’s not our information, it’s yours and you will always know everything because we don’t have the right to withhold it from you, it’s your child. And I’ve always found that really reassuring because I’ve always felt like, it put us as the people that rather than the doctors and consultant thinking, Oh, we do know that about Alfie and it’s not great but let’s wait and just see. I would have hated to think that could have happened and I’ve, it made us, it made [husband] and I the most important people in Alfie’s life, which we are, and that’s, that’s what was the main para, paramount when he said that, so I found that really reassuring.