Jill's Charity Night Success
What a whopper of a night - Friday 20th May, our ambassador Isla's mum Jill and family hosted...Read More
James is 15 years old and was diagnosed with ALL (acute lymphoblastic lymphoma) in June 2021. After a course of chemo on Ward 84 of the Royal Manchester Children’s Hospital he is currently continuing his treatment as an outpatient there.
We spoke to James’ Dad, Gareth, about James and what happened:
“He’s a typical 15-year-old, he likes being on his Xbox, being with his friends. He”ll meet up with friends at the weekends, his friends and family mean a lot to him. He keeps himself to himself to a certain extent and it’s all about Xbox and YouTube, typical teenager. He’s a good lad never any trouble, we need to give him a bit of a push to study and things like that, but I think he’s all about his friends. That’s probably one of the biggest things that affects him at the moment, that we can’t see anybody during treatment.
He’s the older brother, the other two kids [a brother and sister] are very close to him, they wind each other up but they look out for each other. The other two have been really good about it but have taken it quite badly at times, which is natural, I suppose. Before his diagnosis James didn’t feel poorly, but his parents noticed things weren’t right:
It wasn’t a case of him feeling unwell really, I meant he doesn’t look after himself, he’s a typical 15-year-old in that respect, you’ve got to remind him every day to have a shower! His complexion wasn’t great in the run up to the diagnosis, but we noticed it was getting worse when he had this quite large lump on his neck. We thought it was just a skin problem and we were going to keep an eye on it.
But then more of these lumps kept appearing, so we started to get more concerned and then he came down one morning. He’d just had a shower and forgotten to get his trousers so came down with just a towel around him and his chest was just littered with these marks all over. We just knew then that there was some something wrong.
We tried to get into the doctors but Covid was still an issue, so they weren’t overly keen on seeing him and sent him for some blood tests. We were told he was low on vitamins, but not what was causing it. We knew something wasn’t right with him, so we kept pushing and eventually he had more tests. It was really bad for four days because every day the outlook got worse until we got the diagnosis and they said he had leukaemia.
So, with hindsight, in regard to symptoms, he had skin and ‘raised nodules’ for 3 to 4 weeks around the face, abdomen and back. These all progressively increased in size. He also had a cough for 2 to 3 weeks and had complained about some pains in his legs and joints. We just assumed it was growing pains really. But he himself, he felt well, he would still meet friends for a couple of hours on a Saturday or Sunday, in himself he was fine. Maybe a bit more tired but he wasn’t ill or anything like that. We wouldn’t have known if it wasn’t for these marks on his body.
He eventually had a bone marrow aspiration, trephine, lumbar puncture and skin biopsy which confirmed the diagnosis.”Gareth and his wife Laura didn’t expect the diagnosis when it came and took the decision to break the news to James themselves:
“We were shocked, it was so heart breaking. It sounds a terrible thing to say but you never think it’s going to happen to you, or not to one of your kids anyway.
He’d been in the hospital in Preston on the Friday to Saturday and they said he can come out whilst we wait for blood test results. He felt well in himself, so he met his friend on Sunday afternoon to just hang out, it was outdoors because of COVID at the time. But the Dr called us to say, could you get him back in immediately and the following day we got the diagnosis.
We didn’t want the doctors to tell him. Laura and I, we sat him down and told him. We’re not sure what is really going through his mind a lot of the time because he doesn’t talk about his feelings, so we told him, and he was very quiet about it. He just took it on the chin, he accepted it and asked a few more questions. You could tell it hit him hard because he went very quiet, stayed like that for a while trying to absorb the information.
It’s devastating when you have to tell your child that and, obviously, kids these days, they start to Google and its always the worst thing thats going to come up. So, you have to answer all those questions too, that was difficult. And then I came home and spoke to the other two to explain the situation to them. My youngest one didn’t really understand it, although I think he does understand now. They were both upset, I think we all can’t understand why it’s happened to him, that’s still a long process even now with those two. They see he’s back in hospital now, and when it happens unexpectedly, the other two get quite worked up about it. My nine-year-old Matthew, he was asking, is he going to be okay, is he going to die? Those sorts of questions are just horrible. So it’s been really difficult to get through that. But the first week or 10 days, that is the terrible bit because you don’t know how to deal with it. You don’t know what’s coming, every day is different. I think the bit that really hit home was when he had to go into theatre and he was shaking, that was the only time he really got worked up and that was horrible.”
James’ treatment began with intensive chemotherapy in hospital:
He initially had 81% blast and by day 8 (rapid early response) he was at 20% blasts on BM.
James was allocated Schedule B treatment of UKALL 2019 which consists of remission induction with Vincristine, Daunorubicin, Asparaginase and Dexamethasone.
He was four weeks in hospital receiving chemotherapy then he’s been released as an outpatient and, in theory, he goes back in once or twice a week, but he’s had severe headaches when he goes in for a week. He had to go back in yesterday and he won’t get out probably till tomorrow. His blood levels have dropped, so they couldn’t treat him properly, he’s receiving the chemo again and his body struggled a little bit so over the weekend, he was up being sick. So, he’s back in there on fluids again now. The hospital is concerned with his weight as he isn’t eating too well, he appears to be losing weight on a daily basis. As a result, James may need to go onto a NG tube so he can receive the nutrients he needs.
That’s the biggest challenge for him, in his mind. He thinks ‘I can deal with it if I know I’m going in on Thursday, I know I’m going to have this done. That’s fine, I know what’s coming’. But it’s when he goes in on a Sunday morning, and unexpectedly doesn’t come out until Tuesday evening, that’s what he struggles with. I think he can process it in his mind if he knows what’s going on and what’s coming. It’s when these other things happen. He’s dealt with the treatment really well, he’s been amazing. He’ll let them do whatever they want to him, and he doesn’t flinch, whether that’s injections, lines put in for taking fluids, he doesn’t complain he just takes it. It’s only this last couple of days when he’s been sick, he’s been struggling with that. He’s on all sorts of medication but he’s been excellent with that, puts his earphones in and just does it.
James has had inpatient treatment at Ward 84 at The Royal Manchester Children’s Hospital. Gareth says they’ve found it a supportive place; from staff to other patients and their parents:
The ward has been amazing, there are lots of different people in there; the Macmillan nurse, play therapy people, all have been helping but particularly the staff when you don’t know really what’s going on. I think what’s difficult as well, is that James is 15 years old going on 16, so he’s one of the older ones in there. Once he got a bed, he didn’t want to move and stayed around some of the smaller kids, that helped him a little bit, just to get to know other people and talk to them. From a support point of view, it’s been excellent, couldn’t really ask for more.
That’s something I’ve noticed with James; normally when you meet James he won’t say anything to you, he’s very quiet, he won’t take to you. He’ll say hello but he won’t really engage, particularly with adults if he can help it, because he’s a bit shy. But he’s just asking the questions. Whilst he’s quite happy to take all his medication, he wants to know what they’re doing to him, what they’re giving him, ‘what’s that for?’ I was sat next to him, about to ask a question, and he beats me to it. I think because he’s a bit older, he probably is more inquisitive as to what’s going on and he’s not stupid, he knows how serious the illness is, it’s a difficult one. He knows. But he won’t ever accept… his approach is ‘I’m going to get over it’ type of thing.
I didn’t expect that from him, to be honest with you. You’d expect as a parent that you’d be asking all the questions but he’s quite open, quite relaxed asking what’s going on. Now he’s been there for a while he’s quite comfortable in that regard. Obviously, now when they do things, he knows what’s going on. But at the start, he was quite inquisitive about what everything’s for and asking ‘will this make me ill?’
Gareth says that prior to James’ diagnosis, their knowledge of childhood cancer was just the overarching premise of it, nothing in detail:
It shocked me spending time on the ward, getting to know other parents, naturally when you’re in a place like that you do lean on each other, they’ve all got different types of cancer, but you’re still going through a difficult time. When you’re talking to other parents, and you’ve seen their children, it does bring home to you the different types [of childrens cancer] there are and the impact that can have on people. Plus catching it late, and the impact of that. I think we probably go through life a little naive around these sorts of things, until you’re living and breathing it.
I think in your mind it doesn’t happen a great deal, you think it’s rare to a certain extent. It’s only when you see the number of children in there and how ill they are. But also, how they are taking it head on, what amazes me about the ward is the positivity in the kids. I must admit, I was very naive about it and the different types of cancer children can have. In hindsight, I didn’t really know much and its a real eye opener, particularly that first week, as you start to understand it a bit more.
James and his parents found out about the work that Kidscan do and decided to lend their support by becoming ambassadors:
It was Alison [Kidscan’s Community Fundraising Manager] that got in contact with me. I was in the hospital one weekend; I spoke to my wife and we said we wanted to do something for the ward because the whole situation had a big impact on us. Not just with James but also with the other kids as well. The severity of it, the whole impact it has on people, not just the kids themselves, but also the families. I posted on LinkedIn saying I was trying to raise some money for the ward and Alison got in touch via that and just explained a little bit about Kidscan. From that I looked at what they did, and Allison told me about this Ambassador role, so it went from there really. James is keen to do something as well if he can do, so if we can do something we’d love to.
We are incredibly grateful for James and his family’s support and from the whole Kidscan team, we wish you well on your treatment journey.
If you’d like to know how you can support Kidscan as we raise awareness and funds for research into gentler and more effective treatments for children’s cancer, read more here: https://kidscan.org.uk/support-us/
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