Additional Episode: How Isla Stones Raised Awareness Of Childhood Cancer – The Isla Tansey Story

In 2017 when 7-year-old Isla Tansey was diagnosed with terminal cancer she began a campaign to decorate 'Isla Stones’ which she gave to her friends and family to hide. 
  
Isla lost her battle to childhood cancer DIPG in 2018 and her legacy in the form of ‘Isla Stones’ made their way all over the world.  

The Islastones Foundation is now a registered charity raising money for research into Childhood Cancer, as well as awarding grants to affected families.  

This episode released on International Childhood Cancer Day 2023, featuring Isla’s parents Katherine & Simon, serves to raise awareness of childhood cancers, the Islastone campaign and provide support to any other families experiencing the loss of a child. 

Islastones Foundation: www.islastones.com 
Islastones Instagram: www.instagram.com/islastones 

If you have any questions, here’s how to get in touch:
Instagram – @liftingthelidfuneralpodcast
Email – Liftingthelid@gseller.co.uk
Website – www.gseller.co.uk/podcast
Watch the episode on YouTube: Lifting The Lid - YouTube

Transcript

0:06

Hi. My name is Andy Eeley. I'm a Senior Funeral Director with G Seller Independent Funeral Directors and we've been serving bereaved families since 1910. Now, I'm sure you are well aware there's lots and lots of different myths, taboos and misconceptions around what happens within the funeral profession. So we've decided to put this series of podcasts together to try and answer some of those questions and dispel some of those myths. So if you do have any questions, please, like, share and subscribe email the questions to liftingthelid@gseller.co.uk and we will do our absolute best to answer them for you. It genuinely is Our Family Caring For Your Family. Now, this episode is a difficult episode. We're going to be raising awareness of childhood cancer. Now, in 2018, my co-host Joe actually had the privilege of looking after the funeral service for the late Isla Tansey. Now, you may be familiar with Isla and her legacy in the form of Islastones. So we felt it was natural for Joe to take the lead and reconnect with Isla's family and carry on with this next episode for you. Hi there. My name is Joe Clarke-Ferridge and I'm joined today with proud parents of Harrison and also Isla Tansey, Katherine and Simon. We're here to talk about Isla and also the legacy that she's left, of course, on the local community here, but actually around the world as well, because I know that there's been a lot of stones found in all sorts of places. First, what we'll do first, though, if you don't mind, have a bit of a chat, if you could just let us know a bit about Isla, her story from when she started. Yeah, so Isla was born on the 1 May 2011. I've lost my voice already. That's not very good, is it? She was trouble from the moment she was born, so she got sepsis on the first day she was born and was really poorly overnight. We thought we were going to lose her because she had to be ventilated and they were having to give her loads of different types of medication. But she managed to survive that first night and then three weeks later, she was diagnosed with a heart murmur that she had three holes in her heart, but all those things, it never stopped her did it? She lived a happy, independent life, She was kind, she was beautiful, she was always smiling, she loved going to school and basically, her and her brother and I and Simon just went out and lived for each day, really, didn't we? Because it was really important to us that she just kept going and did the best that she could do, even though she sort of had a difficult start in life. You would never have told the order that she got, would you? She was like, fiercely independent and so clever. So, yeah, lived every day to the full. Yeah, definitely. Absolutely. I mean, when, sort of how old was she, when did you sort of had a diagnosis as to as you know, what happened to her. So it was a weekend. August August 2017. Yeah, August 12th. August 12th. So we'd taken her brother to scout camp. He was going camping for the weekend and then we bought her home, didn't we? And just normal weekend, really. But on the Saturday morning, I got it up and I went into her bedroom and she was crying. She'd got one of those weird cabin beds with steps, and she was at the bottom, and I was like, what's the matter? and she was like, she says I can't walk, properly and I was like, oh, come here. Get up. So I stood her up, took her into bed, and then she's like, my legs aren't working. And I was like, what? And then I called down to you didn't I? and I went, Si I think I think we better go to the doctors because Isla's legs aren't working properly. So we went to the minor injuries unit at Sunnyside. Sunnyside Hospital, I can't remember what it's called now. Hinckley Hospital. Yeah, everyone calls it Sunnyside. Yeah, it will always be Sunnyside. Took her there, saw a doctor there, & he was like, not really sure, you need to go to A&E. So we took her straight over to A&E. At this point, she couldn't walk at all. She started off looking like a little bit like she was drunk, almost, didn't she? It was really weird. And then just gradually, as we went into A&E, it was really bad. She couldn't walk at all. It just escalated from there Within the space of a few hours didn't it Yeah. All sorts of things had to be done in order to make her comfortable. And then she was admitted straight away. That first night was terrible. She was in so much pain, we didn't know what was going on. Someone did mention that it might be a spinal tumour, didn't they? But it was just a nurse on the ward. She didn't know. But Isla had loads and loads of different tests, and they thought she'd got a diagnosis of transverse myelitis, which is I can't remember exactly how it works, but it was something that grows in the spine and can cause damage. Puts pressure on the spinal cord. You can recover from that, can't you, with certain treatments? So we were like, oh, that's all right. We can deal with that. But obviously, she'd got, overnight, she'd got a spinal cord compression. So the next day, she couldn't walk, she couldn't move her legs, she couldn't... it affected her breathing, affected her bowels, bladder, bladder, everything. But she still had the use of this she could do the things that she wanted to do. She didn't have the pain she had on the first night, so that was an improvement. So they gave her loads of different treatments. We went to different hospitals. We went to Queens in Nottingham. And she had a thing called plasma therapy, which basically where they insert tubes into her neck, bless her and take out the plasma out of her body and then pump, clean it up and then pump it back into She hated it, didn't she? It was really invasive. Yeah. So she had all that treatment and then she had some other treatment as well, didn't she? Wasn't immunotherapy, but it was something similar to that. That didn't, she wasn't improving. They were expecting her to be improving with all the treatments that she was having if she had transverse myelitis. So our neurologist, who was a really great man, was like, because she's not improving, we need to send these scans to other doctors. So they sent them over to Children's Birmingham, Birmingham Children's Hospital, and the neurosurgeons there took a look at the scans and said, we need to operate. So they basically called you in the next... Yeah, we went in straight overnight, pretty much. So what sort of time scale is this from that first.. I think we're talking about three weeks, wasn't it? I mean, she was having MRIs, it seemed like every other day, wasn't she? She was having lumber punctures. It was just everything that they could think of doing, they were doing. But her consultant just kept sending different MRIs over to Nottingham, all around the world. Yeah, just talking to different colleagues. Birmingham came back and they just said, like, we need her in and we need her in tomorrow. And the surgeon came in, performed, I think, spine electomy. So they basically removed Isla's spine The bits she could feel as well, so it was really cruel. Took out the tumour, he said he took it all out and the tumour went off for testing. Obviously, Isla was, she was on the neuro ward at the time. Massive, massive operation. And then we were hoping for some good news, weren't we? Yeah. The surgeons gave us, I think surgeons are more positive, maybe than they need, overly positive. So they were like, we've got the tumour, we've got it all out, we think it's going to be all right. But then about a couple of days later, they got some results back, didn't they? And they had to call us into the horrible side room in Birmingham Children's Hospital. And I knew it wasn't good because there was a student nurse on placement. She was a lovely nurse, but she cried all morning. She couldn't even look at us. She was just, like, ignoring us and this isn't going to be good. And they took us into the room and they told us, didn't they, that Isla had, what do they call it? They called it a glioblastoma multiforme initially, which is the tumour that they removed. They confirmed it had crushed her spinal cord and she'd never walk again. And she would be paraplegic, but the initial tests showed that it was malignant. And then they had to wait for further tests to find out the grading of the tumour, which seemed to happen quite quickly. So we kept saying that we've got to keep optimistic. You've got to, kind of like, you've got to find hope in something. But every time we had hope, the news, it was turning the corner and being faced with even more bad news, wasn't it? And it just became just this kind of spiral down, really, with the kind of options and what might happen with her. And then we found out it was stage four, then we found out that it had a mutation of DIPG, which usually grows in the brain. Yeah, it doesn't normally grow in the spine. No, it had this kind of genetic mutation and they said they'd treat her with radiotherapy in order to try and kill off any residual cells, but there was a possibility that was going to kind of cross the brain-blood barrier and then start to develop in the brain, which is what happened, really. The consultant, she did say that she might be the one, she might prove them wrong. So we never gave up hope that she might have more time, didn't we? But she started her radiotherapy in December. No, it was in October, because we had a big party, so my friends had a massive party, Halloween party, and they did a bed of nails event and Isla went, she lay on a bed of nails, all of her friends were there and they just all dressed up as witches. It was really lovely. Interesting. And then the next event, and then the next day, she went in to start her radiotherapy and we had to stay at Birmingham Children's Hospital for the entire time she was having radiotherapy because the house wasn't obviously set up for her because we're in a little terraced house. So we lived on the ward. We'd already been living in hospital from the August, and she travelled basically from Birmingham Children's Hospital to Queen Elizabeth Hospital in an ambulance and they blue lighted her over, which she absolutely loved. Every day. Every day, Mnday-Friday she had to be sedated every single day. And it became increasingly more difficult, didn't it, really? Because it was just like such a horrible kind of experience for her. But in order for them to deliver the radiotherapy, you had to be, like, perfectly still, so they could target the correct areas. But every day she did it. Lots of teddy bears, lots of bribery. Anything to get her through. And the team were amazing. But she because she was going into an adult hospital, it was just in the radiology department, there was like, lots of older people and they just were so sweet with her as well, because they were all going through the same thing. But to see a child going through that as well, they were just so kind weren't they? Because, you obviously talked to Isla about it. How did she take it? Because I know, of course, out of it came the positivity of her and eventually the Islastones Campaign. So how did you talk to her about her diagnosis? Yeah, well, when we found out that she'd got it, we didn't kind of tell her about the degree that it was. She was six years old. I remember her consultant at Birmingham Children's, she said to her, are you going to tell her? And I went, what do you think? I said, don't you think it's taken enough? How do you tell a six year old that they're going to die? You can't do it. It's taken enough away. She needs something to hang on to, doesn't she? And we made that decision quite early, didn't we, really? We were always open and honest with her about what treatment she was going to have. And she knew she got a tumour in her spine, a naughty tumour. The biggest thing for her was, like, being able to do dancing, because she loved dancing, so she was like, I'm never going to be able to dance again. I was like, look at this. And we used to get videos up of people in wheelchairs dancing and people doing different things in wheelchairs, just to kind of make her realise that she, it wouldn't stop her from doing anything. That really helped. But we couldn't, during that time, her guinea pig passed away and it was like the most horrible thing I had to go and see her in hospital and tell her because I couldn't lie, because she was going to be coming home. So she would have, the first thing she would have wanted to see was her guinea pig. And just telling her that was hard enough. So to tell her that she was going to die herself at six years old, she just couldn't comprehend it. So we didn't tell her about fully about the diagnosis and that she was going to die. Of course. I know you said a lot of events and things happened, didn't they? I mean, how did the Islastones sort of come about? Was that her idea? Well, we had so many good friends, so after the radiotherapy, she went home, then she became very poorly, went back into hospital, and then she came back home in the February, didn't she? And everyone, basically, the local community, our friends and family all came around us and supported us. So I have this really good friend, Sally, through school, and she used to bring different things for Isla to do, because Isla was stuck in bed, we couldn't touch her, we couldn't really move her about, she was in so much pain. So Sally one day was like, I've been really busy today and I've managed to get some stones from B&Q She'd really appreciate that impression. So she turned up with these stones and she was like, well, we're going to decorate them and then we're going to hide them. And then my sisters, who are an amazing support as well, Auntie Jackie, Aunty Laura and Aunty Di, they were sitting with Isla at the time and it would give us time to have a little bit of a break. So they decorated these stones and I've still got one of them with a unicorn on. And my sisters, naughty Aunties then hid the stones around and set up a Facebook group. And they're like, we'll set this Facebook group up and we'll see where these stones go. My goodness. The group, like, grew within, I think it was like about 30,000 within the space of a week. It just exploded. We thought there would be a few people around, like Hinkley around town. And there was people all around the world hiding stones for Isla. Even Isla's, consultant at the Royal, one of the doctors in America, spoke to her and said, oh, have you heard about this girl Isla? And she was like, yeah, she's my patient, and she was like, she couldn't believe this consultant, couldn't believe that this American consultant had heard about Isla. So it was just phenomenal. We had to get friends to help us through because we were caring for Isla 24/7, so we had to get friends and family to help us run the group. It just exploded. And she loved knowing where they'd come from. Oh, yeah, it's like start of the day, wasn't it? And then be going through, like, Facebook for her and seeing where someone had found one, someone had hidden one and messages that were left for her. And it just meant so much to her didn't it? Because we always joked that she'd be famous one day and that was a real comfort to her, wasn't it? I think she loved it And of course, regrettably the day comes, of course, when Isla passes away and she passed away at home, of course, didn't she? I quite vividly remember, actually, because it was myself came to your house. It was a very hot day, wasn't it? And we were, at the time, we were having an extension, like a bathroom built for Isla I think, we'd had a really nice weekend, hadn't we? We'd been to the theatre to watch a David Walliams play and then we'd been to our friend's house for a barbecue across the road, didn't we? And then we came home. But she wasn't right. She obviously hadn't been right for a while. She slowly declined, but you don't see it at the time. You just think, they're just going to keep going. No, that's it. I mean, her consultant over at Leicester, or the oncologist at Leicester, came and saw, I think, the week previous, and she says, I think you'll have a really good summer. I think you can have a really good summer with her. I don't think there's any major concerns at the moment. But that day she wasn't right. She was sleeping more and more and although she would wake up and shout, she did shout at us, I think on the day, she'd tell me off sometimes. Probably, the day before, I don't know. I still remember the day that we lost her she woke up twice and she told me that she loved me and she told you that she loved you and that was the last time that she spoke. Yeah, I think she spoke to Andy as well because he came in to see her, but her brother had gone away. He'd gone to a farm to do some horse riding because we tried to keep things as normal as possible for Harrison and then all of a sudden she just deteriorated and she and she started having seizures. And the nurses, the Diana nurses, they came out. We called them, didn't we? But we did panic a bit but you can't prepare for stuff, you can't prepare for that sort of thing at all and she waited for Harrison and then she passed away, didn't she? I still didn't expect it though. It's all very surreal isn't it really? The whole kind of experience over the course of eleven months really. Yes, but we hadn't really, we hadn't really thought about what we were going to do at that point. We didn't know who we were going to contact or what we were going to do, and then I wanted her to be close. That's why I chose you guys, because we were quite close to where we live. So I remember coming into the house there and, you know, it was all you tried to obviously be as positive as you could. You know, there was a bit of laughter in there and you're obviously discussing, you know, things about her and then, of course, looked after and then from there, of course, we sort of recommended the next course of stages from there, but for yourselves, did you deal with the passing differently between the two of you? Did you cope different coping mechanisms between the two? Yeah and you threw yourself into organising the celebration, didn't you? Yeah and in the initial, you needed to go and see her more than me, didn't you? Yeah I only went to see her once and I couldn't do it any more than that but Simon went you went quite often, didn't you, before which was fine and you respected that I didn't want to go. WE've got tissues here, please feel free... How did other members of the family sort of react to things? You're very close knit, aren't you? I know everyone sort of pulled together, didn't you? We had so many people came around didn't they? Our close family. All our family were there. Yeah, it was friends. It was very busy. There wasn't time to kind of be alone, really. And that was probably a good thing initially. But I'm quite different to you, quite private, aren't I? and I do need time to kind of, like, reflect and kind of process what's gone on more. But it was I think that's an important point, isn't it, about different people reacting differently and coping differently? Yeah, definitely. Which is, I think, why, I probably went to see Isla more because I just needed that quiet time with her, really, if that makes sense. We sat here, actually, prior to starting to record this, trying to piece together the day of the funeral, didn't we? Yeah, I remember having, I remember my friends came round, didn't they? All our friends, and they helped us organise it. And you came round as well? A few times, Yeah, I came to see as many times we need to, to get things sorted, of course. Gave us advice about how things would work and everything like that. But then you were saying about how it came to be in the Mead and I was like, yeah..? We were saying because of course, we had the funeral service in Argent's Mead because the band stand was important to you. And when Isla passed away, the local community of Hinckley they put Islastones down in the band stand and basically we just went there, didn't we? Every day for two weeks we went. It was almost like a focal point, like the initial mourning period, wasn't it? Yeah, really, when we go down late at night, it all be lit up, but yeah, I think it was the outpouring of love from the community that kind of helped to that extent, didn't it, then with regards to the celebration in the Mead I think it was just a natural progression. Natural progression to actually share Isla with everybody, which we'd shared in life we had to kind of share the moment that we said goodbye, really. So I think it's really important. It was a day of celebration, wasn't it, of a life far more than a funeral service down there. And of course, we had the horses how did the horse drawn come about? Was that a request from Isla? We just wanted something special. She was obsessed with the unicorns, as most girls her age were. And it just seemed like the most fitting and most appropriate thing to do, didn't it, really? And I think that's just an image that's kind of burnt into my mind, just seeing the horses come down our road initially and yeah, I think it was very fitting. Yeah, no, it was a lovely service and I recall in the Mead, very sort of personal to yourselves and it just showed that funeal services can be anything you want them to as well. They don't have to be just at I know you went to crematorium eventually but you don't have to be just at a crematorium. We did the crematorium, it was a closed ceremony, but there was still a lot of, there were still a lot of people there. I don't think we could have had everyone there. We wanted to make sure it was a proper celebration, because her life was so special. So many people had become involved so quickly, I think. And like you say, it's just that way of giving back to the community in a way that you wouldn't think possible through a kind of funeral kind of thing, wasn't it? We couldn't have got all those people at the crematorium. With regards to her school, of course, it makes you think, actually, about how our friends coped, the school and how they did help. Did they have they come and see you? What impact did they have? Yeah, because school was a massive thing for Isla. She was on the council, she'd starting on the council, but she and Mr Harding, the head teacher, he came around to see her quite often. Hh hadn't been enrolled long, had he? No. And obviously with me working at the school, and I wasn't actually working at the time, I think it was just a question of he wanted to just be there for Isla, just to meet her and just to engage her with the school, although she couldn't go at the time. And obviously Harrison was there at school as well. And we knew it was really important that we were honest with them and honest with Harrison about what was going to happen to his sister. So the school were amazing and they actually arranged for a counsellor to work with Harrison to prepare him for what was going to happen. And she met with me. I don't think she met with you. No, she didn't. Did she meet with both of us separately and almost gave us our own bit of counselling, talk us through what she's going to talk to Harrison about? But it helped me a lot as well. Yeah, definitely. And then school, like Isla's friends, like Isla went into school a couple of times. Once or twice, didn't she? Yeah. We managed to get her in get her in her school uniform and just wheel her in, in a wheelchair, just so she could spend some time in the class. She just popped with life, didn't she? Her friends, didn't treat her any differently at all. She went to the choir and then when Isla passed away, they they all kept in touch, didn't they? Yeah, the school had a ceremony where they released, I think, 100 balloons. The whole school turned out for it. And Mr Harding and the headteacher gave a really beautiful speech about Isla. He's bought a unicorn and it's in reception. Called Isla. Right. And they also had the stone as well. They've got a stone there as well for her, as well. We just keep in touch with them, don't we? Yeah. And they've helped us out with fundraising events we've used the school as a venue and things, and they always say, like, keep in touch, and they try and keep her legacy alive. And we've asked them to introduce an award an Isla, an Isla Tansey award last year, didn't we, for kindness and bravery. Yeah. So it's a values schools, values based education, and then they just give it to the child that's showing the most, like, resilience. Doesn't have to be, like the most academically, kind of greatest achievement. It's just all the children are on their own journeys as well, within the school. That's really a lovely thing. Famous again, like you said. Yeah, she would love it. Because, of course, you say about fundraising. I know, of course, there's various fundraising events you do, isn't there? I've seen you down the Mead of course, when we've had, there's been food things there, isn't there? Got me band, tell us about those. You've got fundraising events coming up. How do you go about sort of following those? How can we get information, is it via Facebook? Yeah. Initially, when Isla first passed, we did a lot, I kind of threw myself into fundraising and obviously working as well. But over the last kind of two years, since sort of the last year. It's been difficult because we set up as, our own registered charity and COVID hit, didn't it? And so that kind of restricted what we could do. We did a lot of online kind of like things, didn't we? Auctions, afternoon teas to celebrate Isla's birthday. And I think, thankfully, in a way that you kind of pulled back from throwing yourself headlong into it. I could potentially have killed myself, if I carried on the way I was going, I wasn't taking care of myself and I recognised that as well. So the pandemic, although it's been really tricky for a lot of people, it did kind of help me to kind of step back to it, slow down. But the things we've got planned, as we always do the local events in Hinckley, we love doing the events and working with the local council and meeting the community. And then we're going to do a walk, aren't we? So we're going to do it's Three Peaks, but it's not the Three Peaks. You don't do Snowdon and all that, it's in Yorkshire. That sounds a lot more manageable. It is a lot more manageable. So we're going to do Three Peaks but our version of the Three Peaks, and then we're just going to keep doing different events coming up. We've got a planning meeting with the trustees on Thursday, but we just need to pace ourselves because we need to look after ourselves as well, and we've got other responsibilities. Yeah, it's difficult, though, isn't it? And I think it's difficult for charities at the moment, because people just haven't got the money, although people are still really generous, aren't they? People are so generous. I think we're trying to shift our focus on to encouraging other people to do events on behalf of Islastones Foundation, rather than it being down to you or us and the volunteers all the time, because it does, it impacts you. But we have helped 30 different families affected by childhood cancer. We've made grants and they've taken holidays and had special equipment and things like that. And then we've just recently done a part fund in a research trial. It's a clinical trial at Great Ormond Street it's the first one in the UK, because normally what would happen is your child would be diagnosed with cancer, especially the type that Isla had, the DIPG, and then there is no treatment other than radiotherapy, which is palliative within the UK. So you have to basically fundraise. So it costs about £250,000 to get your child treated. So people will go abroad, they will sell their houses, they try and fundraise for treatments and things. Because there's no treatment in the UK, we've just helped it's a £1.2 million pound project and we've only been able to support by putting in £50,000. But that still helps significantly, helps a family and pay have treatment. And hopefully there will be better outcomes for children with this kind of cancer, because there isn't any kind of cure at the moment. Like with Isla, the time we had was probably ten months from the day that she woke up not able to walk properly. Some children have less time than that. Some children have literally weeks yeah, with that type of cancer. So, in a way, I always think we're kind, we were kind of lucky, even though we were very unlucky. If there's going to be people that are probably watching, listening to this, that are going through what you went through right now, is there any advice or anything you could say to them, anything that might help them in their journey with someone through this? I think don't ever give up hope. Make the most of every day, definitely. Even on the bad days, you can still find smiles, can't you? Yeah. And just reach out and let other people support you as well. Don't push people away. I was slightly different to you in respect of I found myself almost mourning while Isla was still alive. And I think if you have feelings like that, that's natural, really. But like you say, then you'll have a day when something special has happened and it's focusing on those special moments, isn't it, and not being kind of dragged down by the fact that you're mourning while your child is still alive, but you know that you're going to lose them at some point. And it's almost like it hangs over you, doesn't it? Yeah. You know, you can't let it consume you. So you think that's advice I would give, its natural, but and we did talk about that, didn't we, as well. I think it is. It's about having open discussions, isn't it? Talking about hard facts, what's going to happen, hard facts of it all as well. Communication, really important. Thank you very much for this today. I know, I'm sure it's not been an easy thing necessary to sort of talk about in some of that detail. I'm just going to point these out. These were the Islastones that have been painted lovingly by Lucy in our office. Well done Lucy, much better than what I would have done. Very good. Much better than I would have done too, they would have been just a blodge of burgundy and grey on the stone. But we're going to go and sort of scatter these around. I'm going to take my daughter and we're going to go and hide them around Hinckley in various places. I think I'm going to London at the weekend. I'll probably take one there, I think. Thank you so much for coming in today and just going through this with us. I'm going to go and give my daughter a hug when I get home tonight having spoken to you, so thank you very much and cheerio. Thank you all. Thank you, Joe. I'm sure you all agree that was an incredibly powerful episode and I echo Joe's, comments there. I think me and my children, over the weekend or sometime in the near future, we're going to distribute a few Islastones. If it has raised any questions, please like, share, subscribe, send the questions, send them to liftingthelid@gseller.co.uk and I will see you next time. Thank you.