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Harriet

Age at interview: 31
Brief Outline: Alfie was diagnosed with acute lymphoblastic leukaemia [ALL] in August 2012 when he was twenty-two months old. Alfie is now aged 4 and is on the final or maintenance stage of his treatment and is due to complete it by early 2016. About a year ago, Alfie had a high temperature and after tests he was diagnosed with influenza B. He was treated with IV antibiotics and recovered well and was sent home after a week. He did not developed secondary infections. Before his diagnosis of influenza B, Alfie was already on two prophylactic antibiotics; nitrofurantoin every day and on septrin twice a week.
Background: Harriet is married with two sons aged 4 and 2. She is self-employed and works part-time. Ethnic background: White British.

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Alfie was diagnosed with acute lymphoblastic leukaemia [ALL] in August 2012 when he was twenty-two months old. He is currently on the final or maintenance stage of his treatment and is due to complete it by early 2016. At this stage his chemotherapy is administered orally and mostly at home and once a month they go to hospital for IV chemotherapy and every three months for an IT methotrexate where they put the chemotherapy into his spine. For five days of every month he is given steroids. Harriet explains that at present one of the biggest side effects comes from the steroids, which make Alfie tearful and agitated and hungry but unable to make decisions. Every Friday, he has methotrexate orally at home which makes him very lethargic. 

Alfie has been fortunate not to have had serious infections during the course of his treatment, such as pneumonia. But early on into his treatment, he developed a urinary tract infection (UTI). He is on two prophylactic antibiotics; nitrofurantoin every day and on septrin twice a week to keep UTI and pneumonia at bay. With regard to antibiotics use, Harriet explains that Alfie needs them. She doesn’t question their use but she would be more reluctant to give them to her younger son if he had a cold or other viral infection because he has no underlying health issue.

Harriet and her husband have explained ALL to Alfie in an age-appropriate way by saying that his blood is not doing what it should and hence the need for all his treatments. The thing that Alfie hates the most is to have his blood taken through his port-a-cath that happens weekly.

Harriet and her husband work together to give Alfie his medications at home. Harriet has found it easier to give medications at night, unless otherwise indicated by the care team. She finds there is less chance of missing something. 

About a year ago, Alfie was diagnosed with influenza B and had a high temperature. His parents took him straight to the hospital like in other occasions when he had also developed a high temperature. Alfie had his blood checked and they started him on IV antibiotics while waiting for the lab results. Like other times when Alfie had been in hospital, he has his own room and his chemotherapy treatment stopped until the infection was sorted. After two days, his temperature went down and within a couple of days he became well again and after seven days he was sent home. Harriet said that the only long-term effect of his influenza was a lingering horrible cough that lasted for about a month afterwards.

Harriet has great trust in the care team that looks after Alfie and has felt much supported by his oncologist nurse and the team in general. This has helped communication between healthcare professionals and the family as well as treatment decisions. 

At the time of Alfie’s diagnosis with ALL Harriet was pregnant with her second son and said that the whole period was very tough. But Harriet and her husband have enjoyed the emotional and practical support of the wider family and of friends. When Alfie was diagnosed, Harriet’s mother took a year off from work to support them. 

Harriet said that early on during treatment she and her husband were advice of the importance of bringing their younger son to hospital appointments and hospital visits for the little one to feel he was part of it. She feels it was very good advice.
 

One of Alfie’s flu-like symptoms was that he slept a lot during the day, which was highly unusual for him.

One of Alfie’s flu-like symptoms was that he slept a lot during the day, which was highly unusual for him.

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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.
 

Harriet says Alfie’s oncology team are ‘amazing’ and seem to ‘know everything’. They keep Harriet and her husband informed and treat them, rightly, as the most important people in Alfie’s life.

Harriet says Alfie’s oncology team are ‘amazing’ and seem to ‘know everything’. They keep Harriet and her husband informed and treat them, rightly, as the most important people in Alfie’s life.

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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.
 

Harriet was worried by the Alfie’s diagnosis of influenza B until the nurse explained what it was. She says “influenza sounds much more scary than flu.”

Harriet was worried by the Alfie’s diagnosis of influenza B until the nurse explained what it was. She says “influenza sounds much more scary than flu.”

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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”. 
 

Harriet has never questioned the need to give Alfie antibiotics. She believes they have been crucial to his well- being and prevent him from developing complications.

Harriet has never questioned the need to give Alfie antibiotics. She believes they have been crucial to his well- being and prevent him from developing complications.

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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.
 

Harriet has a very different approach to Alfie and his younger brother taking antibiotics when they have flu or flu-like illness.

Harriet has a very different approach to Alfie and his younger brother taking antibiotics when they have flu or flu-like illness.

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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. 
 

Although Harriet worries about antibiotic resistance, antibiotics are vital in keeping Alfie well enough to complete his chemotherapy treatment.

Although Harriet worries about antibiotic resistance, antibiotics are vital in keeping Alfie well enough to complete his chemotherapy treatment.

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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.
 

Harriet explains that, particularly during the winter months, she doesn’t take Alfie to busy public places where there are lots of children.

Harriet explains that, particularly during the winter months, she doesn’t take Alfie to busy public places where there are lots of children.

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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.
 

Alfie is immunosuppressed and would frequently get a temperature and need to go to hospital immediately.

Alfie is immunosuppressed and would frequently get a temperature and need to go to hospital immediately.

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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. 
 

Harriet believes Alfie’s newborn baby brother picked up on the stress she was feeling. She had to stop breastfeeding earlier than she would have wanted because she was in hospital with Alfie.

Harriet believes Alfie’s newborn baby brother picked up on the stress she was feeling. She had to stop breastfeeding earlier than she would have wanted because she was in hospital with Alfie.

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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.
 

It was important to Harriet that the doctors told her Alfie had influenza which made her realise it was more serious than a cold.

It was important to Harriet that the doctors told her Alfie had influenza which made her realise it was more serious than a cold.

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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.
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