This is the transcript of an episode of our podcast, That Cancer Conversation. You can listen to the episode here

Sophie  

Hi and welcome to That Cancer Conversation, the podcast by Cancer Research UK that brings together the science and the stories behind cancer, with me, Sophie Wedekind.  

September is Childhood Cancer Awareness Month, when we highlight the stories of those who have been diagnosed with cancer at young age. But before we get into this episode, just a warning that it may contain some upsetting content for listeners, and if that’s not for you feel free to listen to one of our other episodes and subscribe to be notified when the next one drops. 

Every day in the UK, 12 children and young people will receive the devastating news that they have cancer. And that’s not just impacting 12 individuals, it’s impacting 12 families.  

Austin was first diagnosed with a type of blood cancer called acute lymphoblastic leukaemia on 15th June 2011, when he was two years old. Austin is now 14 and I sat down with his parents, Lou and Scott, who spoke to me about his incredible story. 

Lou 

It’s amazing the things that he’s been through for such a young age. That’s just very, it’s very rare for children to have to go through such awful treatments that he has. And when he was about nearly two, he was ill for a very long time, like a month or so. And we had to keep taking him to the hospital and they just kept sending him away.  

They just never did a blood test. And they kept saying it was tonsillitis. So sort of a month down the line of him getting more and more ill we this time demanded that he has blood checks. And there was a really great doctor on that day. And he said, right we’ll do a lumbar puncture. And like from that moment, a month of him being ill they like blue lighted us to the hospital and said that we think he’s either got meningitis or cancer or something and then they were brilliant at the RVI in Newcastle, and they said, Yep, it’s leukaemia. And that was obviously just a big shock.  

Sophie 

Blood cancers like leukaemia can cause an abnormal amount of white blood cells to be produced. Too many white blood cells can overcrowd the bone marrow. So there isn’t enough space to make other types of blood cells, like neutrophils, which are important for fighting infections. 

Lou 

But because he had these viruses before leukaemia his neutrophils were already so low, that he got an infection in his bottom. And this is within a week of them telling us he had cancer. And, he just, he was so ill. Basically, the skin was just disappearing and turning black. And he was rushed into intensive care. 

So he was in intensive care for a good few weeks. They were absolutely amazing. And it was very much touch and go there. And he did actually come through that. 

So then after that, we had to give him physio to get him to walk again and he had to have a colostomy bag. So that was like a month or so. They had to stop his chemo for that. Because of that delay, they then had to put him onto the most intensive regimen. It was awful. It came with all the usual side effects of leukaemia treatment. It was awful sickness and diarrhoea and everything. But unfortunately, after that he was okay for a short time, but he relapsed. 

Sophie 

After his relapse Austin was put onto another treatment, called R3. 

R3 was a combination of chemotherapy drugs given to children and young people with relapsed acute lymphoblastic leukaemia at this time, but was quite toxic. 

Lou 

I lost Austin mentally during that time. He just couldn’t even communicate he was just staring, and for a boy that always used to laugh and sing every day, I just didn’t get anything from him. And that for me that was one of the hardest things. 

I mean, we were living in hospital, we hardly ever left. That was months. So after that we actually did get a couple of years, he got through it. And it was lovely to get life back for a short time. And then he got another relapse. So this is actually relapse number two. 

He obviously had to have a bone marrow transplant now. And, and that came with full body irradiation that included cranial radiotherapy. And we had to live on ward three, which is the isolation ward. So we were there for a couple of months. And there can only be like, one parent in at a time. That was hard. And you actually had a German donor for this one. An amazing German guy who actually donated twice for Austin. It did actually work. And we again, we got a couple of years back again, it was lovely, and not to have that pit of worry in your tummy, just living with it constantly. 

Sophie 

But when Austin was seven he relapsed again for the third time.  

Lou 

And this time I didn’t really think there was much they could do because the cancer sort of had gone mostly around his body and into his CNS system. So it was in his sort of brain fluid. And his little body couldn’t really take much more. And I rememeber the machines in the hospital really beeping ,they never stopped beeping, because he was on so much, so many drugs.  

And he got a nasty virus in his lungs. This is all because he had no neutrophils and its body couldn’t. It just couldn’t fight it anymore. The X rays of his lungs that were just full of virus and they had an oxygen tank on and he was breathing very in a laboured way. And they said, right, there’s nothing more we can do you take him home. And the strange thing was, I couldn’t wait to take him home. And I loved taking him away from the hospital and not having any more beeping machines. And we put him in the lounge. And we decided that we had to try and keep everything as upbeat as possible. So we had little Lottie around and visitors, I mean he was just lying on the settee. 

One night, we were camped out next to his bed and I held his hand. And his breathing was…you couldn’t even really hear the second breath. And I said “you can go now”, but I sort of fell asleep when we woke up in the morning he was still alive, which was really incredible. Unbelievably his body, it just decided to fight back.  

And honestly, no one could believe he’d come back from that. No one. When we walked in back into the hospital, like two weeks later, he got a standing ovation. It was really amazing.  

Sophie 

Austin was put on a gentler course of chemotherapy to stop his cancer symptoms getting worse again. Then, Lou and Scott found a new trial taking place at Great Ormond Street Hospital, led by Professor Persis Amrolia. This trial was a type of immunotherapy, called CAR T cell therapy, which uses donated T cells that would be modified and trained to protect against cancer. Austin was given these immune cells from the same German donor who previously provided bone marrow. 

Lou 

And it’s the very, very first time that we’d been offered a slightly different pathway that wasn’t just like bomb his whole system, but to actually target the cancerous cells. So, like we were, over the moon, to be able to be offered something when all treatment options have been exhausted. So we were actually really excited about that. And within a year unfortunately he did relapse. I’ll never forget that. 

Me and Scott were about to go out to a big party, we’re all dressed up. And Persis called me and said ‘I’m so sorry, but he’s relapsed, again, on that T cell trial, but we have another one that’s a little bit more advanced. And this second trial is using actually his own T cells, not a donor this time.’ And that is our saviour. And that technology and improvements, just over quite a short time, saved Austin’s life. 

Sophie 

This T cell trial, called the CARPALL trial, was led by researchers at Great Ormond Street Hospital, including Dr. Sara Ghorashian, a consultant haematologist and honorary senior clinical lecturer at UCL Great Ormond Street Institute of Child Health. 

Sara 

So I was involved in the clinical study that treated Austin and since which he’s not needed any further treatment. And at the time, I was a postdoctoral researcher at the Institute of Child Health, and as such, I was the lead scientist on the study and so I actually made his CAR T-cells in the laboratory. 

So we take the cells that look after viral infections in the body and help protect against  infections. These cells are called T cells and we take them from the body and then we take them to the laboratory and then we genetically manipulate them so that they can recognise leukaemia and then infuse them back into the patient. 

They expand and make an army. So we infuse them, and then there a relatively low numbers, and they start dividing and expanding as they start recognising the molecule that they can now see on the surface of the leukaemia cells. And then, having expanded, they can recognise leukaemic cells. They’ll lock onto target and then it’s like a kiss of death. And then basically through the point of contact between the two cells, they deliver these granules that are toxic, so they fire these granules into the target cell and then the target cell dies. There are a number of different mechanisms, but that’s what we see under the microscope when we set our CAR T-cells, these special T cells up against leukaemic cells. 

The T cells don’t normally see cancerous cells or leukaemia cells because they’re too similar to the body. But through the process of this gene engineering that we do, it’s like putting glasses onto the T-cells, so that now they can see the leukaemia. And for as long as the CAR T-cells hang around in the body, then they’ll keep on seeing the leukaemia, potentially and can help then recognise and kill those cells. 

Sophie 

Scott, Austin’s dad, remembers the moment his son was given his own engineered T-cells. 

Scott 

To the patient, and to the family, it looks simple. They look like platelets. And if you’re a leukaemia sufferer, you’re getting platelets all the time, it’s just another yellow bag of platelets going up in a warm water bath. So it looks it’s quite unusual to see them when they came through when they had them presented. And they’re, you know, bringing them into the room and we were joking with the trumpets playing and stuff it was a ‘you’ll never forget the day’ it was great but yes goes in in a very humble way in a non-threatening way which is great to see actually but I suppose in some ways you kind of wanted to go in a bit more sci-fi because what’s in the bag is so you know, so life changing it’s kind of unusual that it was quite a simple and mellow process.  

Lou 

A bit of an anticlimax but we tried to make it more, exciting. 

Scott 

Yeah, I remember that but it was good because you know that what’s in the bag is really special. 

Sara 

So it was quite scary when the cells were going in, in case he was to get any toxicity, but ultimately, it’s been the thing that’s protected him from relapse of his leukaemia. And so, you know, that’s a really strong thing to have been part of. It’s a big achievement – not just to be the scientist who delivers the treatment, and that was in the setting of lots of support, of course, both from my mentor Persis Amrolia, who was the chief investigator on the study, and also, you know, the Institute which has helped deliver this research, and UCL of course. But just then to have also been looking after him medically at timepoints after the CAR T-cell infusion and then to have been the person who actually helped make the cells in the laboratory. It’s a pretty sort of end to end job if you like.  

Sophie 

But medicine is only one part of this story. There’s much more to care than things like chemo or even CAR-T cell therapy – because children with cancer are still children. And for Austin, Lou and Scott were surprised to find how important toys and play were to his recovery. 

Lou 

I never thought it would play that important [of] a role. But when we were stuck in ward three, and you’ve really for months, and there’s not much to do, he just loved the Lego. And he built a superstar destroyer practically himself on that ward. His room is still, still, full of his Lego, we’re trying to sell it now. And yeah, just a little packet, like at lunchtime is running out to get a little pack of Moshi monsters and you don’t know what’s inside the pack till you open it. And his eyes would just become alert. And he would. That’s what got him through that little bit of excitement every day. And music and dancing and singing. And the play nurses were amazing. All of that. We feel very strongly that you have to keep it very positive and be mentally happy as much as you can, which obviously is really hard when you’re not really feeling it. But he actually remembers all the fun things. The irony of that – he just remembers hospital as fun and we obviously we still have to go now as well. So he enjoys going, its always been enjoyment. 

Scott 

Oh without a doubt, I’d definitely second that, for sure. You could see it in him actually. And I’m actually I guess so to add on top of that a little bit. I’d say the time. When kids are in hospital, people want to bring them things. So therefore gifts become a little bit of a part of a norm if you like. So in terms of advice, and from what I’ve seen what’s good was the fact that these little gifts were small and not expensive. But there was lots of them. And that means if a kid’s in hospital for a long time, it gives them the goal. It’s like kids collecting football stickers or whatever the hell they’re saying, you know, it’s the same stuff now Match Attacks, whatever. But it’s a psychological thing that made a huge difference to Austin. There were days where if it wasn’t for a plastic Moshi monster, he wouldn’t have got off the bed. But the notion of going to go and find one and find in shops like driving all the way to go to Gateshead to go to an Argos because we’ve heard wthey’ve got them. It’s kind of mad. But that was good to see us see that Austin was engaging his brain and moving his body and getting up and getting out the chair and fighting to get in the chair. And we were doing it for a 50 pence Moshi monster. But it was a big deal that we were seeing the kind of inadvertent mental awakening, if you like, or the physiotherapy side of it, that he was getting out of the chair and moving and not given up the fight yet, because he was so weak with it, you know, taking oxygen bottles, just to go and walk through a LEGO Shop. 

Sophie 

Toys have an incredible ability to motivate and engage people. And that’s why Sara is working with a company called Echo Games to develop computer games for the people participating in her team’s research. They’re helping families with children who have gone through CAR-T cell therapy understand just how these unique cells in their bodies work. And it turns out it’s a lot like Pac Man. 

Sara 

[gaming noises in the background] 

The Pac Man game was the first game that we played and that gave us lots of rounds of engagement and conversations. You could direct your CAR T-cells around the bone marrow, and then you could hit leukaemic cells to kill them. We wanted to represent the research that we were about to do, which is the research funded by CRUK. So here, we were trying to represent our investigation into what makes CAR T-cells effective. So, the children would play the game first and see what the limitations are for their character. And then they’d get a score, and then they would be able to choose a superpower to give to their CAR T-cell. So they can either try a longer life or the ability to reach cells that are further away with a death ray, or they could divide and then the two cells will then go around in cooperation. And so then they can replay the game and see if their selected superpower was effective in terms of their score improving. And that was basically what we were then going to be doing in our research – trying to understand which characteristics was more important for CAR T-cell therapy.  

We felt but we wanted to be able to reach the children not to explain the treatment before they have it, but more afterwards to help explain a little bit about what we have done and what they’ve received. And then through that start conversations potentially, either with the children or their parents, and that’s helped us start conversations in turn then about what are the their thoughts on research and what we’ve done so far and what would their priorities be for our research in the future, and it’s difficult to do that in the context where you’ve been a doctor in you have been, you know, administering a treatment that sets the patient and family doctor relationship up in a very sort of one way fashion where, you know, I’m, I’m dominant in the interaction, but by through this process of having this computer game and codesigning it with the children, we’ve been able to reset that balance. And that means that suddenly all this information starts flowing in the opposite direction. 

And through things like this, we also engage with our families, and then we had lots of other conversations around not just the research, but also how we deliver CAR T-cell therapy and what more we can do to help families coming through CAR T-cell therapy. And then that has spun off some additional activities. So we, through our conversations identified that families felt that there was good technical information and medical information, but that just how to cope and how to support one another in hospital or afterwards, was tricky. And so they suggested that sort of peer to peer support, help would be good to inform other families of how to just manage. And so through that, because this was at the time of COVID and the pandemic, and we organised videos to provide that content and that was sort of curated and again, it was sort of it was curated with the families so that they would agree the content of those videos to help support other families going through CAR T cell therapy. 

Sophie 

Cancer is incredibly complex and it can be easy to get lost from all the jargon being used, especially when you’re not used to it. But having things like games, that can help visualise and break down these concepts are important and include the people affected by cancer in the conversation  

I spoke to Caroline Leek, founder and director of the Fruit Fly Collective, a group that supports children, adults and families affected by cancer. She focuses on how we can explain the complexity of cancer and break the taboo behind the conversation. 

Caroline  

Well, I’m a scientist by background, and then I had my kids. And I realised, actually how they learn is very different. I came up with this idea of just creating a family tool where there was understanding what cancer was and how you get it all those questions kids ask, but also how’s it treated. We added on all the tools around communicating how you can support better communication within the family, because that’s a critical thing, really. And then also providing tools where they can, the children and effectively you know, the parents get emotional support around sort of coping tools. 

Actually, to understand complex things that happen in families, for example, health problems, or whatever, then to be able to sort of bring in that creativity, and that sort of using different ways of learning together as a family, I just thought was already kind of critical thing. 

And we packaged that up together and then you know, it was kind of lapped up by all the healthcare professionals and saying this is what’s needed and then we sort of grew from there really. 

Sophie 

Mm – Did you find there was a difference in having these conversations with children compared to ones you were having with adults? 

Caroline 

Yes, there is a quite a significant difference in my experience. So for example, we did a whole school education programmes where we went in and we taught primary school children, over 1000 of them. And so obviously, statistically, quite a few of them had been affected by cancer in their family or community. And the difference between going into a staff room for example, so we taught the teachers beforehand, was palpable. So like, you get an assembly hall full of kids, and it’s just, you know, a real buzz they are very, very curious. They’re really like engaging, whereas you walk into the staff room full of teachers, and there’s just sort of a sense of fear. So the adults are just generally more fearful because they’ve had, they have a better understanding of what the impact of cancer can do. And so they’ve grown up in a society that cancer is a taboo subject still, whereas kids don’t so kids come to a conversation about cancer in a completely different way. They didn’t have preconceptions or the impact of cancer. And they genuinely are very curious. 

Sophie 

Yeah and there can be quite a lot of science jargon in cancer as well – and that can be complex even for an adult to understand. And sometimes when we’re writing articles for our website Cancer News we try to use metaphors or analogies to help people visualise things like how treatments work or how cancer cells behave. So, when it comes to talking to a child about cancer, do you use similar tools or are there any different tools that you use to communicate to them about this topic? 

Caroline 

Absolutely so we often also like for having as exactly what you said about visualising what it is because cancer is really – for kids that don’t understand cells and bodies and organs,  it’s just like an odd, weird thing. So to actually give them something to hook on to something so they can visualise, so we often use the flowerbed analogy. So that’s like, you know, you’ve got a beautiful flower bed: the cells are like the flowers that are growing healthily, and then you have weeds. And so the weeds are the cancer cells that actually if you don’t get rid of them, they’re gonna kind of ruin the flowers or healthy cells. So just like the gardener pulls up the weeds, the doctor [is] going to be pulling out the cancer and so that they can understand they can draw, they can go and look out and look out in the gardens or whatever and that can really help them with their understanding of what’s going to be happening. And then of course, you can use that analogy if the cancer spreads so you can talk about weeds growing underground and popping up in different parts of the flowerbed, so it’s quite a useful analogy. And sometimes we use Lego, so for kids that love Lego so building a LEGO wall you know they can be like the healthy cells, and if you get some kind of mashed up Lego piece or one that’s got like a pea or something stuck in the middle and it won’t kind of fit on you could say you know that’s like the tumour or the cancer cells and so what we’re going to be doing is getting rid of that and so the wall or the Lego can be built into a lovely wall again. 

Sophie 

That sounds like a lot of fun, and also a really great way to get them engaged with the information. Did you find that perhaps the adults also wanted to get involved with that? 

Caroline 

Oh, definitely. Absolutely. So with the teachers, they loved it. And at the end, it was such a massive q&a, we were there for ages in the  staff room, because they suddenly had all these questions that they actually they’ve been, it sort of feels like they’ve been storing up. And playing with all the stuff that we had. So we had like, 3D printed hands that had glowing tumours in and they were, like, elbowing each other out the way to try and get there and to, to blast the tumour. And we had a massive fabric doll that you open, zipped open, and it had a little fluffy tumour and stuff, and they had to take a biopsy. And they just loved it, because it was just like, play again. And it was just like, you might you’re learning about stuff, you know, but it’s actually still in a very sort of quite fun and creative way. And then also the same way, when we do family workshops, you can see often the adults will sort of step back and allow the kids to do all the things like dress up as, you know, doctors or pathologists or whatever, and come and, you know, and take out the tumour from the doll. But slowly, you can see them coming forward and actually really wanting to be involved. And by the end, they are you know, they’re putting on, you know, kind of boxing mittens in order to try and do their shoe laces up to represent neuropathy and things like that.You know, they’re just totally into it, because they can see actually, their kids  don’t have the fear, they want to be involved. And so it sort of encourages the adults, so it’s sort of in a sort of different Yeah, it’s from a sort of bottom up really, if you get the kids involved and suddenly the adults go oh, this is safe. This is okay, this is not as painful as I thought it was gonna be and actually it’s quite fun. 

Sophie 

Every day there’s progress being made to help beat cancer and take the fear away from a diagnosis. Since his treatment, Austin has continued to participate in CAR-T cell therapy studies. His cells have taught Sara and her team a lot about what’s needed to make the treatment work better for more people. It shows the importance of the partnership between researchers and the people that take part in groundbreaking trials like this. It’s not always known whether a study is going to be a success, but the commitment of research families, like Austin’s, means that we are able to move forward to designing the next generation of approaches and providing better options for children in the future. 

Sara 

We have learned that families are prepared to go to great lengths to try and achieve a cure when none seems possible, and that that means building up an element of trust – that even if it isn’t successful on that occasion that you can build the trust so that they’re happy to go on another journey with you in a different trial and continue to innovate as you need to. And that the patients are often very strong advocates – even if you feel like the progress didn’t go in the direction that you wanted, they’re often the strongest voice to say, ‘No, get back out there because you need to adapt that therapy so it can reach more people’. 

It’s obviously great to have a one hit wonder that meets all the criteria and achieves all the needs. But the reality is, with the newer treatments, particularly the immune therapies, that isn’t the case – it’s a question of making observations, taking those observations back to the laboratory and doing the full cycle again and again, through iterative designs that incrementally get better, that break new ground, that take you in a new direction. And I think, once you’ve had an almost serendipitous success in one area, it then becomes a responsibility to try and expand that to other areas so that other patients can have access and other patients can have the hope that these new treatments can provide new ways forward where other therapeutic options have not helped or are limited. 

I mean our families often have been on a study before and then they come on another study. So they’re often very committed patients and families that are happy to take the leap of faith, to try something new, because they know their options are limited. And, you know, some of them are really brave in taking that on board, either by being the first patient to be treated with that product, or knowing that there may be some toxicities that we’ve seen before that might apply. There’s the leap of faith, there’s trusting us to try and do our best and trusting that this process might lead to better options for children in the future. And then there’s all the generosity of submitting yourself to the clinical study, yes, and the follow up that’s really needed to define the effectiveness and the toxicity of the treatment, then allowing us to go further and ask these other questions, which are still very relevant, but aren’t necessarily defined as the outputs of the study. 

Lou 

Austin and I still go once a month. You can’t have all of this treatment and there still not be side effects. He’s 14 now. It’s not like we can just say, oh, right, we’ve over now, we we’ve got through all this. The history of what has happened to us as a family doesn’t just disappear. It stays with you forever. But it is definitely more in a positive way now that we are out of the bad times. We’re just dealing with side effects. But that’s okay. 

Scott 

The enormity as well of what we’ve done and the emotional intensity means that you cross the bridge between patient and carer – it is closer. I think any families that have long term health issues, you meet really special people in healthcare really, really special people. You have to be hardwired in a very special and caring way to take that kind of job on, so you meet lovely people and they support you when you need it and you can’t, well you shouldn’t, I can’t see how you could – personally we can’t forget that, so that emotional relationship continues and you kind of want to help where you can. So it’s a pleasure to go down and see everyone again and relive some positive times with them, which every year sort of slowly chips away at the enormity of negative times because they’re with you on the really horrific sessions. So it’s lovely to forget about them and just reminisce of little sparks of good little events that happened years ago and see them again on a purely positive visit. Everyone was trying their best. But that’s, that’s where science was as a as a broad spectrum. So if you can do anything to help push data along to move things forward to the next set of families don’t do as much damage because you know, a lot of stuff is set up because the treatment is so damaging, and it takes so long and it turns your life upside down for so long. If you can cut huge amounts of that out and get on to immunotherapy treatment programme, the bad news day doesn’t then make this arc that travels years. The arc could be a much shorter timeframe. And you think actually, in a year’s time, we could be through this, with minimal long-term effects. That’s an amazing goal to reach. And hopefully, with science on your side, you do it. So I feel it’s a really worthwhile endeavour to put the effort into supporting the charities in that way. 

Lou 

Sara and Persis, they have been just absolutely incredible people and they are our heroes. 

Scott 

It’s a team, isn’t it? There was no other option, you know. That’s why when you say how do you make the decision, there was a spark of something. And then when you get that reward, why do you want to help? Because that’s how close we were, yeah that’s how close we were. 

Sara 

I think the impacts of therapy are often not visible in the medical sense of the word. To fully realise the impact on a patient, you need that voice to speak to the low-level toxicity, or the small disappointments or the things that just make things difficult. And that’s very difficult to quantify. We have scientific tools, but sometimes they just don’t, they don’t, they’re not as impactful as the patient voice, and so this is so important. And not only that – that empowers us to go further and to do more.   

Sophie 

At 13, Austin wrote a poem for school, sharing his experience of having cancer. But before we hear it, I want to take this moment to say a huge thank you to all our guests on this episode. We hope you’ve enjoyed this episode and if you like, you can explore our show notes for more information and resources. 

Now we hear from Lottie, Austin’s younger sister, reading his poem.  

Lottie 

I’ve been dealt a different hand in life, that’s moulded who I am  

A hand of wildcards with high stakes  

A gamble for Christ’s sakes 

Exchanging home for hospital  

Discarding friends for nurses 

Trumping toxins for T cells  

Dealing with problems I shouldn’t have to deal with.  

For now I will stick  

I’m happy with my hand  

I hope the deck doesn’t get shuffled again. 

Sophie 

That Cancer Conversation is produced by the digital news team at Cancer Research UK. Thanks for listening and talk to you next time.