Episode 46 - (TW) 'Your child has a brain tumour'

(Trigger Warning)  In this episode - Benj talks us through every parent's worst nightmare, from the moment he and his wife Sarah were told their 4 year old daughter Ivy had a mass in her brain to where they are now as a family 18 months later. 

This episode contains conversations that some people may find distressing such as the effects of the tumour and treatment.

It's important to remember that everyone's experience is different, this is Benj's experience, your experience may differ from what is discussed in this episode.

If you are affected by any of the subjects raised in the episode please do contact our support team on 0808 800 004 or email the team at support@thebraintumourcharity.org.

You can email our Children and Families Team - childrenandfamilies@thebraintumourcharity.org

You can find out more information about Craniopharyngioma here.

You can find out more about our Children and Families Service here.

If you or someone you know needs a listening ear, you can contact our Support Team by calling 0808 800 0004 or by emailing support@thebraintumourcharity.org

For general information about the podcast, you can email podcast@thebraintumourcharity.org

Transcript

Sarah: 0:10

Welcome to Let's Talk about brain tumours the podcast where we'll be talking to people who have been affected by brain tumour diagnosis, either their own diagnosis or the diagnosis of a loved one. We'll also be sharing news and updates from brain tumour charity about what we're doing to halve the harm and double survival. Before we get started on this episode, we do want to make people aware that this episode is talking about childhood brain tumours, and the impacts of treatment surgery, and the actual brain tumour itself on both the child and also on their families. So please do be aware before you start listening, and if there is anything in the episode that you find upsetting, please do contact our support team. Details will be in the show notes and at the end of the episode. And with that said, we're not going to continue with the episode. Welcome to the podcast, joining us today is Benj, who's going to be sharing his experience of his four year old daughter Ivy's diagnosis with us. Thank you for coming Benj.

Benj: 1:07

Thank you very much for having me.

Andy: 1:08

Hello.

Sarah: 1:10

Like I said in the introduction, your daughter Ivy was diagnosed when she was four, and that was 18 months or so ago.

Benj: 1:17

Yeah, so I mean, exactly, it was September 2021, so, yeah, I mean, kind of a little bit more than than 18 months ago now. But yes, it felt felt like a lot longer than that, put it that way.

Sarah: 1:34

And what happened? What was the first starting point that you thought something might be not quite right?

Benj: 1:41

I mean, the first, the first symptoms, if you like, that we experienced, were, were a change in mood, I would say it was the it was her character that started to alter, I mean, Ivy, Ivy has always been a sort of bubbly little character and, you know, my, my, I have four children, and Ivy's number three, and the first two, it was it's so distinct, Ivy's character is so distinct from the other two and it was like, you know, we were just blessed with this bubbly character that just had this infectious laugh that would just make you laugh so much and so, you know, we used to, we used to overhear the kids chatting, and laughing together and it just, like, warmed our hearts, because we could hear that laugh from it, that iconic laugh. And so, you know, you you just, you just felt like you were the luckiest parent in the world, you know, you had you had this, this ray of sunshine, not that the other kids weren't, they were all we were blessed to have four beautiful children. But there was just something distinctive about Ivy that just was was truly heartwarming, and, and all of a sudden, what started to happen in the spring of 2021, was we started to see that she was just becoming, yeah, that ray of sunshine was starting to dim, and it was starting to dim in a strange way she would we have a fairly sizable garden, and yeah, the kids are very outdoorsy and sort of go out and play in the garden a lot. And suddenly, Ivy would just take yourself off, to sit down by herrself and she sort of put her head in one of her hands and sort of lean her head on one of her hands and, and sort of sigh deeply. And the sort of regularity of that started to started to increase and we, you know, we started to notice it and it was it was it was strange. So that was that was the sort of first symptom that we were starting to think something not right, but you know, by no means as a parently are you thinking, you know, there's something serious here, not by any stretch of the imagination, you're just thinking, Well, you know, kids go through periods of time where they their characters change, or they go to nursery, something's going on, you know,

Andy: 3:55

Were your other two kids boys are with a boy girl was in the first

Benj: 3:58

Yeah, so I've got a, my eldest is a boy and then and then my other two are girls, so I've got three girls and a boy.

Andy: 4:06

Okay, yeah.

Benj: 4:07

So, so yeah, and then, but then coupled with that, sort of shortly after that, that withdrawing or withdrawn sort of character, traits that we started to experience. We started to see that Ivy was there was something else was happening sort of physiological, and that was waking. She started to wake up in the middle of the night and that this was very, it was intermittent at first, it was very intermittent. She woke up one night, this was spring again. 2021. It was this distinctive cry, it was it was almost like that feeling where you feel quite sick and queasy and you feel like you're going to be sick and so there's this kind of sort of really deep moan and but cry at the same time. She said I've got such a bad headache, this was like I don't know probably 11 o'clock at nigh, she'd been asleep for a few hours and she was waking up and complaining of this really frontal headache this this headache right at the front of like her forehead just here and and then that pain would sort of increase in the moment and then she'd vomit and

Andy: 5:09

Presumably neither of your the two previous children have that.

Benj: 5:12

So yeah, nothing nothing.

Andy: 5:14

She knew something was maybe wrong.

Benj: 5:16

Exactly. So it wasn't it wasn't a thing that we had we thought was particularly alarming. We hadn't seen it, but there were other kids, but at the same time, your child's sick and has a headache, you don't immediately go brain tumour, not by any stretch of imagination. You You just think, okay, my, my child's got a headache and maybe she's dehydrated, maybe she's, she's in a sickening or something, she's got a bug or whatever it might be. But that symptom came back again, and it came back. I don't know exactly the time period, but it came back shortly after maybe six week period or something like that. And so my wife the second time my wife, Sarah took took Ivy to the local gp and gp gave Sarah this this medicine that was for migraines. My wife said, Okay, well, you know the GP said, well, you know, it is strange. It's strange for her to have sort of these migraines, but you know, it can happen on very occasionally it can happen to toddlers, but let's just refer to a, a paediatric consultant, and just just to make sure that there's nothing going on. But in the meantime, I'll give you this. And so Sarah, Sarah, being Sarah, you know, doesn't doesn't take anything for granted and does her own research and took this medicine away and was really, you know, fastidious about it and checked out the ingredients and went no not not doing that, no chance. I'm giving her that. And so, you know, we got got rid of that, and then and then the the appointment for the for the paediatric consultant came through. But it wasn't till September. I think this is this is probably I don't know, maybe, maybe May time, April, May time. But you know, at that time, again, you don't think anything seriously, you think, Okay, well, we've got an appointment for the for the consultant in September, fine. But throughout that summer, you know the summer, before, Ivy was just that, again, that ray of sunshine. And then this summer is September sorry, the summer of 2021, you could just tell that there was there was actually an escalation of the symptoms. That was there was the frequency that Ivy was waking up at night, and being sick was starting to get, you know, starting to increase. Her character, her mood swings, were starting to deepen, we just got more and more concerned to the point where we're literally starting to think something is happening. Something is built, this is building up to something and I think that that's the thing that comes to mind more than anything else and lead up to a diagnosis was there is something happening, we don't know what and it's absolutely terrifying to be quite honest. And that really leads up to the period of time, when when we rushed her into hospital, I was away with work at the beginning of September, leading up to that period of time Ivy again, was kind of intermittently still ill and then suddenly recovering, so she'd have this headache throw up and then she'd be absolutely fine again. And it was literally like a flick of a flick of a switch and Ivy was was was better again and so that led us to think well this isn't illnes, this isn't this isn't a bug,this isn't sick, this is something

Andy: 8:23

Different, isn't it? Yeah.

Benj: 8:24

So you know, I went away with work. When I came back from from work, you know my wife was ringing me whilst I was away and

Sarah: 8:31

And how did that feel when you're in that situation, Sarah saying to me,you know, I really think something's not right. I really don't, you don't naturally in your head, you still thinking to yourself? Well, you know, it'll probably just be a period of time, which you know, and and it's such a scary feeling that as a parent, like you think to yourself, you don't want to panic, but at the same time you also don't want to overlook something that could be very serious. So I get back from work and and you know, for for two week periods, these intermittent symptoms start to become much more consistent to the point where it was every other night. And then the week before she was fully diagnosed, it was every night. But that period of time during that two week period our appointment with the consultant cropped up so it was like this is perfect, this is, actually turns out to be the perfect time to actually you know, get to see somebody so this was probably a few days before she was actually rushed into hospital, we see the consultant in Calderdale in Halifax, the consultant, you know Ivy's, like got sick bowl before she goes into the appointment. She goes in, she's yawning and you know, really ashen in her face and so tired and and then the consultant sort of says, Yeah, I mean, she doesn't seem too bad to me, she's got a headache, you know, it's yeah she gets sick, she's looking a bit tired. Okay, but all all of her signs, her vital signs were absolutely fine. Everything else to seem like a well kid, which is true, you had these massive extremes of these, you know, headache and sickness and then absolutely fine. when you clearly know something is not right, it was my child, but then you've got a professional person saying, yeah no I think she's seems fine. I thinks she seems alright and you're kind of like, No, I know my child and something is not right here.

Benj: 10:24

Yeah, I think I think that that you are feeling lost, and the feeling of being lost because you are constantly questioning, questioning yourself and you're also questioning the person who's telling you that everything's fine. So who do you believe? Do you believe your gut instinct? Or do you believe the person who's the professional who should know. What I've since learned is that trust yourself, you know, trust the fact that you know your child better than anybody and you know, and that's not just my opinion, that is the opinion of Ivy's team, now, you know, they are telling me now, we tell all consultants, you know, junior doctors, doctors who are going through the process of becoming consultants, you know, listen to the parent, the parent knows the child better than you do.

Sarah: 11:23

You spend your time with them, they just get like a five minute like snapshot meeting, don't they?

Benj: 11:29

And they've also seen 10 to 15 other kids that day,

Andy: 11:33

And kids of that age can't fake it, and they don't fake it so that's where trusting your instinct comes in because when, when the kids are bit older, from my experience, maybe they can, you know, push it a bit or up the symptoms, but when they're sort of four or five years old, what you see is what you get, isn't it? Absolutely, and I think that on top of that, we very much raised our children, you know, not not to make a meal out of things and not to overdramatize situations and so they weren't in any way. She was never the type of kid to be, you know, overly overly feeling sorry for herself in any way. So it wasn't it wasn't as though we were thinking to ourselves, you know, oh Ivy's been feeling a bit sorry for herself. You know what, what we were looking at was it was a kid in serious distress. We just didn't know what to what extent that stress was being caused by something serious and so what was really happening was we were talking to a consultant who was who's being fairly dismissive of Ivy's symptoms. And so he reluctantly said, Okay, I'll, you know, I'll MRI scan her and my wife, Sarah said, well, yeah but I need you to MRI scan now, like today, there's something happening, you know, that these symptoms are getting closer and closer together and they're getting more and more frequent you know, you have to do something now. Yeah, well, I'll put it down as urgent or high priority. Well, over the next four days, we heard absolutely nothing from them, like literally nothing. And my wife rang every single day, to the point where this his secretary said to Sarah, yes, we're very aware Mrs. Hemingway of your daughter. Yeah. Thank you very much. Yes. Can you please stop calling now? When I think about actually had we not done what we did, which was to geographically where we where we live, we are closer to Barnsley hospitals. 15 minutes away. Halifax is 40 minutes away, but because of our catchment area of where we actually geographically live, that's that's our hospital. A few nights later, you know, Ivy woke up in the middle of night again. And Sarah said, Right I'm I'm calling an ambulance, so she called an ambulance. 15 minutes later, we get a call back from from paramedic who says, Why have you called an ambulance? Your child's got a headache, just give us some Calpol and put it back to bed. I said to her, I'm taking it to A&E. I'm not having it on. I'm taking her to A&E. The next day I was talking to my boss and he said, Benji, don't take her to A&E, mate like you'll be sat there for five hours though you'll get the same responses what you had with both hospitals or with the with the ambulance service. And all he was doing his thinking of us, he was thinking that the best for us and and so I said yeah, you're probably right. And that evening, so this is the day after the ambulance decided not to come. Sarah said no, I'm I'm taking her, that's it, I've had enough. I'm taking her. She took her with my mum. I think my dad and my mom took her to because my wife can't drive so my mum took Sarah with Ivy to A&E in Barnsley. 15 minutes away, I stayed with my other kids. She said look, just go to bed. I'll call you if there's anything serious don't just don't worry about it, you know, I'll call you. My mum and dad live in the property next to us which is actually connected as a walkway through to our house. So she my mom walked through woke me up at 1am and said look you need you need to call Sarah it's something serious. I called Sarah and she said, they've scanned her and she's got a mass on her brain, you know that the next thing you do is you try to, for the moment, just focus on what you've got to do, which is get dressed, get your car keys, walk downstairs, my mom stayed with my other kids, you get in the car, and you drive to the hospital and I don't remember any of that. I don't remember anything. I don't remember driving, this is 1am. So the the feeling of of that, the worst, the worst news, or certainly within a category if you like the worst news any parent wants to hear is that it's like stepping into a into another world. It's like stepping into a different kind of reality. Was there any relief in in the fact that you did have a diagnosis so that at least you kind of knew that your instinct was right, that there was something wrong, or did that not enter your mind at the time?

Benj: 15:58

I think that's a really good question, Andy because I know that for some of my family members, when they responded, they definitely had some relief. Because they knew as well, you know, they everyone knew to a certain degree, something was happening, something was seriously wrong. And so my brother and his wife are like ah Ben, that's such good news, because we've at least found what the cause was and I can see where they were coming from. But but as a parent, your first response isn't relief. You because what you're hoping for the whole time is that this actually isn't what you think it is because deep down, you kind of know, you know that something's not right, you know that something is something is happening and you don't know what it is, but you know that it's something serious. And so the first, the first feeling wasn't wasn't relief, for us, the first feeling was just terror, your suddenly living a nightmare that you thought, I don't know, you know, you're this you ever see these series, like 24 hours in A&E or whatever it might be and you look at these families that are going through their child's got cancer or their child's terminal, and you just think, how, how did they deal with that? Well, guess what? You're going to find out and that was essentially what we stepped into immediately and so the first thought for us was, we're going to lose our little girl. That was that's my first thought my first thought was my little girl is gonna die. Because you you immediately think brain tumour cancer, cancer in the brain, if it spread, but for that period of time get into the hospital, it wasn't that it wasn't that it was just I need to now be with my wife, I need to be with Ivy, that is the first thing that I have to handle. I remember walking to them even trembling now as I'm saying it but as I was walking I park, parked the car, and as I was walking to the A&E, waiting room, I could feel myself starting to shake, sort of uncontrollably and my breathing started to become really sort of, you're almost like you're having a panic attack really, you know, you're having some sort of, you know, physiological, psychosomatic response to the realisation that one of your children is seriously seriously ill. And so I got into the waiting room, they buzzed me through I walked through the waiting room, my breathing starting to get heavier and heavier and more and more shaky. And then I see Sarah, in the waiting room and just sort of stood there, walked up to her, grabbed hold of her, and you know, just just broke down the two of us. That feeling I'll never forget, because you just feel like you feel like everything's falling apart. We were then taken from there into into a quiet room by a nurse, there was another doctor and the doctor, the doctor, I'll never forget what what that was like, you know, what's it like when somebody tells you your child has a brain tumour? Well, this is what it's like. You sit down, and he sits next to you. This is what happened for me anyway and he whispers in a really, really quiet voice, there's a mass on Ivy's scan. And the first thing that I said was, is a cancer. His response was it's very, very likely to be you then into a state of just Yeah, I mean, I don't I wasn't hysterical. I wasn't like falling all over the place. I wasn't, I was just, I was just distraught. I was just broken completely. And there's no right or wrong way to react to this, I wouldn't say that you know that there is there is your way and that that way is fine. You know your way of responding to the new the you know, the most horrific news is your way. It there is no prescribed way of handling that kind of news. You know, we were told in that room Ivy needs to be transferred now to Sheffield Children's Hospital because they had scanned her, they had CT scanned her. They had dealt with the circumstances and the symptoms, exactly how we wanted Calderdale to deal with it. These symptoms are serious, we need to escalate it, the nurse escalated up to a doctor who escalated up to another doctor who then got a group of doctors involved. They scanned her, they realised that the tumour was causing intracranial pressure fluid on the brain and there's only so long that the brain can actually handle that kind of pressure. It's a little bit like, if you've got a blocked sink, there's a blockage in the pipe a nd you don't know where that blockage is, but you know, it's there, because you can see the symptoms of it. So you can see the water, you're backing up, and you've sink overflowing. But what was essentially happening with Ivy was the tumour was blocking one of the major pathways that fluid releases from that, what was happening is that fluid was building back up again, just like the sink is building up, but obviously, the skull is there, so it doesn't have anywhere to go. It was it was then creating pressure down on the brain and so as it created that pressure, Ivy would have these horrendous headaches, but during the period of time where she would throw up and then be fine again, the tumour was small enough so that the fluid pressure would build up, but the fluid eventually would drain out, almost like a big gush of just kind of like so much pressure, eventually it released. But as the tumour was growing, that pressure just kept getting worse and worse and that's what we were building up to, that's what we knew was something was something was building up. We were told, yeah, you're going to be transferred to Sheffield children's, we need to relieve the pressure on Ivy's brain and it was strange, I just suddenly, you know, like a switch flicked and I was like, right, I have to be there for Ivy now I have to be there for for Sarah, I have to just put these tears in this, this experience or this, this terror that I'm feeling to one side. We went straight into the waiting room where a couple of nurses were looking after Ivy and tried to cheer her up and, and they said we're gonna get you know, we said to her we're gonna go in a cool bus with a really flashy blue light, you're gonna absolutely love it. So she went with her mum in the ambulance, and I got in the van and drove to the Sheffield children's and this is by now this is like, two in the morning or something or two, three in the morning and

Sarah: 22:22

Did you know, she was gonna have surgery at that point?

Benj: 22:25

Well, not really, because I mean, you know, you've been told well, she's going to have the pressure released from a brain but you don't know what that really involves you assume it's surgery, but you're not really told in that moment. And you know, this is this is obviously during during the back end of COVID as well so at that point, they really only allow you one parent on the ward at one given time. But I was at least able to be there during the night with Sarah and then we left first thing in the morning, I left I had to leave first thing in the morning. But this was like 3am I remember I remember like, Ivy was fast asleep in her bed when I got there so they transferred her into a bed and she was asleep and Sarah and I were just sat next to her bed and I was just looking up at the clock and I was looking at it as like, I don't have three and I just remember looking at just thinking, I don't feel I feel like I'm in I'm in some sort of movie. I feel like I'm in some sort of documentary, this isn't happening. But you know, it is happening. It's this strange sort of you feel so alive because of the state of what is happening but at the same time you feel like it's it's something that something else has taken over in some strange sort of way. Yeah, and then, you know, 8 am, they took her down to theatre. Before I left I was called in to speak to a doctor and they show me the scans, they showed me the tumour and they said, you know it's very likely to be cancer and and you just terrified, you just think your child's gonna die, that's all you think off you're just thinking I'm gonna lose my little girl.

Andy: 23:57

Did you say anything to Ivy before showing down for surgery?

Benj: 24:01

Yeah, so, Sarah, Sarah being Sarah just has this, she's just phenomenal mother and phenomenal woman and she, she had this creative way of being able to put it in, in terms so that Ivt could understand and she said you're gonna go for a magic sleep, and this magic sleep is gonna take you off to a really nice dreamy land and you're just gonna have such a nice time there and it just settled Ivy down. Ivy has this little cuddly toy called Moley from Wind in the Willows and she snuggled Moley all the way down to the theatre and Sarah took her in and I went home and I got picked up by my dad and and obviously I hadn't slept that night and so was sleeping during the day whilst Ivy was in surgery and in and out of sleep and in and out of reality, trying to work out what's actually happening or what's happened. And you know, the first surgery was really just to try and relieve that pressure and they syphoned, 600 mil of brain fluid of her brain, half over half a litre.

Andy: 25:05

Pint, isn't it? Pretty much?

Benj: 25:07

Yeah, pretty much, yeah, that's right, exactly, so over a pint of fluid of her.

Andy: 25:12

She's only tiny as well. So

Benj: 25:13

Yeah, exactly, she was only 4. So that was the first surgery really?

Sarah: 25:18

Did you know what type of tumour she had at that point?

Benj: 25:21

So no, I mean, at that point, we had absolutely no idea, we just we just were told it's very likely to be cancer. But the first focus wasn't wasn't on finding out what the tumour was, or even dealing with the tumour. It was dealing with what the tumour was causing, it was dealing with the fluid, which was killing her, at the time we didn't know, but it was killing her. We were in hospital for a two week period and each day, you being told something else you've been told, you know, because they're discovering as you're discovering in many ways, you know that they're trying to find out exactly what is what is happening. So she then went in for a second surgery to actually find out what's you know, once the fluid had been been taken off, she was she had something called an EVD, which is a external ventricular drain, and it syphons fluid off the brain to create a bypass. So there's a hole in her head, there's sort of coil that sat against the head, a pipe, and then that's, you know, linked back to a bag to try and get rid of the fluid. But then they had to deal with the tumour and find out exactly what was, you know, what the tumour actually was and this is all through keyhole. They went back into actually take a sample of the tumour, and they did that successfully. I remember taking her down to the theatre, and she was really in deep distress when she went down for the second time, because by that time, she didn't she realise that this wasn't a magic sleep as much as you know, she thought it was going to be and so how do you try and convey that she's gonna go for this a second time. But she did. She was amazingly brave and, you know, I watched the anaesthetics sort of takeover and put her to sleep and saw the eyes roll into the back of her head and I had an absolutely massive sob and, you know, you just feel like your child's been taken away from you, but you've got to let it happen. You know, doctors are saying to you, we'll look after her I promise and but there's never any guarantees of anything, when, when you're dealing with a kid that's got something as serious as Ivy had. Thankfully, the surgery was successful, and they they took a sample. From the sample what they started to realise was that actually, this wasn't a cancerous tumour. Before we found out that it was wasn't a cancerous tumour, a consultant, so one morning I woke up, this is after a second surgery, her consultant who is her neurosurgeon now. I woke up one morning at 7am and this guy stood at the bottom of my bed, and he's wearing jeans and a hoodie. And I'm like, Who's this guy? I didn't think he was a surgeon just thought it was random guy just stood at the bottom of my bed and he said, Hi. So my name's Saurabh Sinha andI'll be looking after Ivy for the rest of her childhood. I was like, what? Like, okay, and he said, basically Ivy's tumours isn't cancerous, and I said, well, we don't know yet, we haven't had the results from from the second surgery yet and he said, Oh, no, no, no, I know and I was like, Who is this guy? Like, you know, and it just so happened that actually, this person was the best person in the country when it came to the specific type of tumour that Ivy had and but in the moment as a parent you just like this, this guy is like the sort of bringing all of this confidence and yet he hasn't seen the results, he hasn't done the surgery even. But what we realised later on actually, he was in constant contact with those who were operating. He knew as soon as she came into the hospital, this child has this this specific tumour really rare tumour that he knew everything about. He had perfected the surgical process to remove these sorts of tumours and he was just he was just very straight and honest with me in the moment and he just said, you know, this is what we need to do. This tumour is non cancerous and so immediately in my head, I was like, well, that's great, now she's gonna survive like anybody does anybody who hears that, a tumour is non cancer, it's obviously better than a cancerous tumour because a cancerous tumour spreads and and kill somebody. Immediately. I was like, Well, this is good news. But then he said to me, so the type of tumour she has is called a Craniopharyngioma. Rght, I hadn't gpt a clue what that meant, obviously and he said, they're non cancerous but they're a bastard treat. At that point, I thought well then why are they so difficult?

Andy: 29:19

A medical term, isn't it?

Benj: 29:20

Exactly, yeah, exactly. It's a layman's term for those that mean, yeah, telling me that that essentially, this is going to be really tough. It's going to be an immensely difficult journey. But at that point, we didn't really know what we were getting ourselves into there taking a sample low and behold, a day or so later, the results came back, guess what he was bang on right It was what he said it was. The last thing we needed to do because Ivy was recovering now because essentially, the tumour was sat there. It was growing in size because it was made up of a hard component at the bottom and then these cysts that were growing off it and when the cysts fill, they grow really fast, so the tumour needed to be dealt with, but it couldn't be dealt with in that moment. So we had a final surgery to take the EVD, that coil that was on her head and actually internalise that, so put in a shunt, which went through her skull and sat inside her brain to continually sort of syphon that fluid off and then the pipe ran down under a skin, down a neck and into a tummy and then the fluid would just release. If any fluid builds up, it would just release. So that was the final surgery we had so two weeks in, in Sheffield, children's, and then home. We got home and now you know, you're just trying to piece everything back together. You know, I remember having the conversation with my two eldest kids and sitting down with them. I pulled them out of school one day, this was while Ivy was still in hospital, and I pulled them out of school and I remember sitting down with them in the garden and thinking, How do I do this? How do I tell? How do I tell my

Andy: 30:52

Yeah, again, there's no rulebook, for this, or no guide book. is there?

Benj: 30:56

And the truth of the matter is, is they both needed a different approach because they're two different people. But you don't know, you don't you don't think about that, you just think well, I've got to tell my kids that their sister seriously ill.

Sarah: 31:08

And your going through all of this stuff is in as well, so you're trying to process your own emotions and all the trauma that you've just experienced

Benj: 31:16

Absolutely.

Sarah: 31:17

Now you've got to be dad, the strong

Benj: 31:19

Yeah, yeah, absolutely

Sarah: 31:20

Container for your children to make them feel safe with whatever's going on.

Benj: 31:24

Yeah, that's right. And so you're just trying your very best to try and be the best dad you can possibly be whilst also trying to look after your own emotional responses and, and the truth of the matter is, is that you're actually in something what I would call survival mode. You're not, you're not thinking about yourself, you thought I didn't think about myself, I promised myself that the start of this year 2023, that this would be the start of me thinking a little bit more about me again. Because for the past best part of 14 months, I didn't think about myself all like not for a second. I was just getting to the end of each day. I was just trying to be there for my other two, my other three kids and my wife, and you are just in pure survival mode and so I sat down with my kids, and I told them about what's happening. But I didn't really go into the det because your trying to work out right, well, do they need the details? Do they not need the details to the need to exactly what's happening? Do they just need a broad picture? You have no idea?

Andy: 32:27

So roughly how old they were at the time. Just yeah.

Benj: 32:29

So at the time, Isaac would have been 10 and Evelyn would have been eight.

Andy: 32:35

That's a pretty young still, yeah,

Benj: 32:37

yeah. so still very young. But you know,

Sarah: 32:39

old enough to understand that something's going on, but not old enough to maybe understand exactly what that is.

Benj: 32:45

Yeah, and I think I think you know, the other, the other part of this is the fact that they knew who Ivy was. There was no reason to think that Ivy was changing or going anywhere. Ivy was always going to be Ivy in their minds in all of our minds. At that time when I was telling them, I still thought the same thing. I didn't know what I know now. But we told the other kids about the fact that Ivy was ill there's something in her head that we need to try and take out and they said, Well, what is it? And I said, well, it's something that's grown there that shouldn't be there, you know, I didn't know whether they'd heard the word tumour anywhere and if I said the word tumour, would that actually create a reaction that got them panicked or got them terrified? And it was already heavy enough for them to understand anyway and so one of their questions was, is she going to be okay? And how do you answer that question? Because you don't actually know. But you answer it by saying, you know, we've got the best people that Ivy needs, so we're going to make sure Ivy's okay. Anyway, you know, she comes out of hospital, and she's got a big bandage around her head, and we get home and she sleeps and sleeps and sleeps for days and days and then we have a four month period, really from September through to December of, of trying to, you know, help Ivy recover. And during that four month period, you know, the consultant said, you know, we need to make a decision on what we do next, because we haven't actually dealt with the tumour itself. We haven't removed the tumour, we've still got to deal with the cause, you know, we went in and we talked to the consultants and they gave us three options and these three options were the most uncertain options you could ever have in front of you because it's like somebody like somebody coming up to you and saying to you, you know, one of these one of these cars is is is not fit to drive which one is and you have no idea which one it is because you have know nothing about cars. Well guess what I know nothing about brains tumours so how am I supposed to know which decision to make about what what treatment my child should have? So they lay before you these three options and one of the options is we do nothing for a period of time, so we wait until Ivy is around about seven years old. We surgically go in through her nose because the tumour is behind the nasal cavity and almost sat up underneath the brain, you know in a four year olds head all that is very tight, very, not a lot of space in there. So we wait till she's seven, we go in through a nose, and we remove it that way. The second option is she goes to Manchester for acute radiotherapy called proton beam therapy, six week period under a general anaesthetic every day, you know it's acute treatment that she needs. Or the third option is we surgically tried to remove it. And then the silence. And your response is, I don't know how to choose like, I don't know, what do I do?

Andy: 35:37

You tell me as is what I would say as well

Benj: 35:38

So that was the response like you tell me. So the question that I had was well okay, let's say Ivy is your child, what do you do? And the answer was very, very clear. operate, we would operate. Okay, tell me why? Well, because there's a very strong chance that we can get this out if we go in. Whereas we don't know whether or not we can wait yet because we don't know how fast the rate of growth is and we also don't know how whether or not proton beam, you know, some people say proton was amazing and some people have had bad experiences with it so we would operate. They sent Ivy's scans to a man called Connor Mallucci, who is another neurosurgeon at the top of the field in Liverpool, Alderhey. He looked at it at Alderhey and he said, I agree, there's good opportunity for surgery here. So we said, okay, let's, let's, let's, let's do it. And we said, you know, what we'll tell us what it actually involves specifically? The answer was, Well, if I start at 9am and I finish at 9pm at night I'll be happy, that was the surgeons response. We were, we were then contemplating the notion of the longest day of our lives and so we booked it in, we booked into the fifth of January 2022 and that Christmas was just like, so odd so strange, because you're like you're trying to recover from the news only four months ago, three, four months ago that your child has a brain tumour, but you now building up to the period where they're actually going to try and take it out. They went in on the fifth of January, Ivy had a scar from just the bottom of her ear here and it ran 42 stitches, all the way up to the top of the head, they cut a big hole in a skull, took a piece of a piece of skull out. They separated the lobes of a brain. They went in and they systematically painstakingly removed each piece, piece by piece. They finished at quarter to nine in the evening they

Sarah: 37:41

Do think at that point, right they've done the surgery.

Benj: 37:44

Yeah,

Sarah: 37:45

Did you think, you know, this is gonna be she's gonna be fine now.

Benj: 37:48

I think yeah. I mean, I think I think in the moment, in that moment, you're just thinking, I remember I was we were thinking we were thinking, I just hope that they've got everything. That was what they said was, there's chance that actually we won't get everything and have to send her for proton beam as well. And it's like, well, the last thing you want is to go through both of those things, you want her to go through one, they came to us at quarter to nine and said, she's awake, do you want to come and see her and, you know, went over to him and said right how's everything gone? And he said, we've got everything, we've got everything. So the best news, like the best news, you just, you just, you know, holding yourself with this anxiety for just for hours and hours and hours. And then you just think, right, they've got everything, this is the best news ever. And

Andy: 38:31

She survived the surgery

Benj: 38:32

And she survived the surgery, there was a one in 100 chance she wouldn't come out of the surgery alive. So, you know, we she survived the surgery, and they've got everything. But what we didn't realise in that moment when, when she come out of surgery is that not literally but Ivy died that day, that's that's a that's a fact. So the person who Ivy was died that day and the reason why I say that is because they they think that the not any instrument that touched an area of her brain, but the tumour itself or the liquid that comes out of the tumour. And there's no concrete evidence for this, I have to say that and so I'm not getting this on factual terms, but they're still in such an early stage of doing research on her type of tumour. But then that fluid actually it damaged portion of her brain called the hypothalamus. It also irrevocably damaged a portion of her brain called the pituitary gland, which controls all hormone release. So when you think about it, those two things are parts of the brain that actually control the person that you are. They control the balance of your personality, your character traits, your temperament all of that had been completely wrecked.

Andy: 40:00

Did you know that the time or was that something you've learned since?

Benj: 40:03

Yeah, so we didn't know at the time Andy I mean, we knew we knew that there was her pituitary gland had been damaged and but the good news about that was they were saying to us, you know, the pituitary gland has been damaged, but we can replace all of the hormones that she'll lose so, okay, great,

Sarah: 40:20

not the end of the world, you know, it's not great, but it's not the end of the world.

Benj: 40:23

Exactly, so you know, she can still function, she still, you can one day she wants to be a mom, she can be a mom, you know, she's gonna go through puberty, she's, she's still gonna have the things that other kids have. That's what you think in your mind, and you have no reason to think otherwise. But the first the first symptoms after she woke up from surgery where she was blind temporarily. So her eyes were completely swollen, swollen up, she couldn't see anything. But as as she started to recover, she started to hallucinate. And she was hallucinations, like, you know, she thought the cat was in the corner, and she was calling the cat to come and sit on her lap. She was she was suddenly terrified that she can see crabs crawling towards the to come an nip her and you know, and she was talking to Peppa Pig in the corner of the room. And, and my wife and I were just utterly, you know, beside ourselves, because we, you know, again, this, this, this, this nightmare, it just kind of continued or really started back up again. And so just being told

Andy: 41:25

Had you been told that might be that might happen just out of interest,

Benj: 41:29

so that they were never told, because they never seen it and so we were saying your why, what is happening? Why is this happening? And they said, they kept saying oh, it might be to do with might be to do with this hormone or that hormone. And then one day one of the surgeons came in, and he just said, du you know what Benj, we don't know we don't know why this is happening. And I thought well, thank you for telling me that you don't know because I'd rather you tell him that you don't know rather than this person told me this thing, this person told me that thing and then I'm completely confused. So

Sarah: 41:59

So Ivy comes so she recovers from the surgery, you know, you take her home? Is it that the point where you realise things have really changed? Is that when the kind of...,

Benj: 42:11

Yeah I think that as we you know, the hallucinations get less accute while she's at hospital in hospital and then as we get home, what was a what was a real trait that had suddenly changed is Ivy was saying I am hungry 50 times a day, 60 - 70 times a day. It didn't matter what she ate she wanted more and she would not stop and she would become hysterical if she didn't get food. Now I know that, you know, some parents will go we'll just just didn't give her anything. It's not as simple as that. The other thing that we thought was okay, well, maybe what we give her is we give her you know, food that actually is healthy. But that's not easy either because what started to happen is er irrelevant of what food we gave her it could have been a McDonald's or it could have been, you know, a piece of lean chicken with broccoli, Ivy was gaining weight and gaining weight rapidly. Within the first six months from January to June Ivy doubled her weight. So she went from 22 kilos to 44 - 45 kilos, within that period of time, she became clinically obese. So now you've got a five year old at the time, who's clinically obese, and the rate of weight gain was like a kilo week. So all of a sudden now you've got a child who physically is unrecognisable. Well we also then started to experiences that she was majorly changed in her personality. She was volatile. She was she was angry. She was violent. She you know if I tried to put it to bed, she'd hit me slap me scratched me kick me do anything that she could to try and stop me from just trying to get me get ready for bed. So that's why I say you know, we lost out little girl, you know, she was she was

Andy: 44:11

Yeah the old Ivy was gone

Benj: 44:12

The old Ivy was gone, this was a new child. You just imagine if you have a child and suddenly somebody takes that child away and brings another child in, looks completely different, is completely different in her personality and they've got the same name, you now have to say goodbye. And that first period of time was like grief, but also trying to accept that you still have other kids to look after you still have a job a full time job to do. Ivy at that time, those first six to eight months wasn't sleeping. She would literally wake up 2 in the morning. She'd be sat in a bed or she'll have got out out of bed. So you'd be woken up by by noise and Ivy was pottering around stealing food at two in the morning.

Andy: 44:57

Was that affecting your other kids just out of interest?

Benj: 44:59

Massively because they were like, you know, what's what's going on? Why is this happening? Because in their head and in our head, it was like, well, the surgery's taking care of it all. So we'll get back to being who we are as a family. But, but we couldn't do that it was impossible. We, for six months, seven, seven months, we were just we were in hell. We were just absolutely.

Sarah: 45:18

Did you know, at that point, what was causing it? Because obviously, you've had the surgery, and you were told that she had this particular type of tumour, did they say this is common with this kind of tumour? This is something that is known, a known, because when that surgeon said to you, I will be Ivy's consultant for the rest of her life, did you realise that this was what he was talking about?

Benj: 45:40

So, I think so when we first heard of hypothalamic obesity, which is what Ivy has now, we first heard about that during the first two weeks of a diagnosis. And they said, you know that there is a chance that that could happen. And we were like, that sounds like hell, that sounds like horrendous, that is the worst possible outcome, that that could occur, that Ivy would suddenly just start eating uncontrollably, and put on all of this weight, like, How How could that that, you know, please God, no, that could not happen. We were told there was a chance but we, we, there's such a spectrum of how kids respond to this, you can have some a child who just comes around from surgery just like that and they're sat up in bed. And we were told that that that could happen. And we were also told that something else could happen. But they didn't know they had no idea because

Andy: 46:35

Every child's unique aren't they?

Benj: 46:36

Every every child's unique. You know, we weren't prepared at all we weren't prepared at all, if I'm being completely honest with you, Sarah, we weren't prepared at all. We we genuinely thought we'll get our old Ivy back. You know, we'll we'll we'll, you know, we're strong family we'll crack on and we'll you know, we'll we'll be ourselves again, we'll move past this. And so for that first year, we would basically try to bring it back. And then in July of 2022, the weight gain was so, so heavy. I emailed her her endocrinologist who's in charge of all of the medication for hormone replacement. Yeah, I remember that right in the email and I said, to him Ivy's gonna die and she's gonna die because she's gaining that much weight, that eventually her organs are just going to fail. I can't stop her gaining weight, it doesn't matter what I do, I can stop feeding her, that will be hell, I can keep feeding her that will be hell, there is no actual solution to this, you have to help me. He didn't reply and he told me later on that he didn't reply, because he didn't know what to say. Because the truth is, he felt the same. And so he reached out internationally to two specialists in Germany and the Netherlands and he said, have you ever experienced this? They said, yeah, very rarely, but we've experienced it once before, because he had never experienced it. And so they, they, they said, you know, try this drug. And this drug was an amphetamine, I thought, putting my child on an amphetamine, what on earth is this. Lo and behold, there was no licence for it in the UK. So they, the hospital had to apply for a licence to get the drug. It's in a safe and it has to be signed out by the hospital and you know, all sorts of checks done. So we start her on this drug, and lo and behold, all of a sudden, this drug starts to work and it works from the point of view of Ivy's hunger. So it's suppressed her hunger. It hasn't brought a weight down her weight, still exactly the same. She's now nearer 50 kilos than she is anything else. But having said that she is growing. So you know, there is some some proportion of that that's height. It took the unbearable nature of what we were going through and it felt like the weight, the weight that you were carrying, was going down from 100 kilos to 60 kilos and 60 kilos ain't light believe me but you were just at least carrying a weight that was a touch more manageable than what

Sarah: 49:10

and is that medication? Can she be on that for a long term? Is that a solution to the problem, or is this going to be?

Benj: 49:18

Yeah, I don't I don't necessarily think it's a solution necessarily. I think it's more I think it's more a, it's like stabilisers on a bike and eventually what you want to be able to do is take those stabilisers off but we're not going to be able to. So Ivy is now on a cocktail of drugs. She's on in four or five different drugs to replace hormones as well as the the amphetamine and the amphetamine has helped her sleep better. She sleeps fairly consistently through the night, and the rest of the drugs look after her hormone balance. Last year, she broke her leg, we were out walking together and she broke her leg. I had to carry her about a mile and a half from where we were back to our car and get her to there and inject her with an emergency injection of cortisol into her leg rushed into hospital because if you don't get cortisol into her when she's having a, you know, when she has an accident, or if she has an accident, then she can slip into a coma. If she doesn't take the drugs that for her fluid balance, she can again, if she drops, she can go into a coma, you know,

Sarah: 50:24

What's Ivy's this quality of life, like in that respects because what you've just said, then it's quite a lot for a six year old.

Benj: 50:31

No, I mean, I mean, you know, none of this is normal. I mean, none of this is normal for any of us, but certainly isn't normal for Ivy and she's very aware that she's a different kid. You know, she's, she's aware that she's so much bigger than other kids. You know, when you when you think about it, she she has an uncontrollable obesity and that is as a result of this, this damage to her brain which is just completely dropped her energy consumption, her system that burns energy at resting, it's just completely been destroyed, so actually, any energy she takes in doesn't get burned, it just gets stored and there's nothing that you can do to affect that. So she's looking at herself and at times, I'm getting her dressed and she says, I'm sorry, I'm so big. There are times when she loses it, she says I hate myself and they're the they're the words that you absolutely cripple you as a parent, it's the last thing you want to hear is your child saying things like that. But but it's it's what she feels and so her life isn't in it by any means normal. But all I would say on the back of that, though, is that she is a little local hero, you know, so many people, kids, parents, in our, in our village are inspired by her and and what people have endeavoured to do more than anything is to try and make her feel special and feel normal and feel like she belongs not feel like she's, she's marginalised in any way. And people that say hello to her on a morning, I've got a clue who they are, you know?

Sarah: 52:05

Because obviously, she's six now, do you worry about her long term health?

Benj: 52:09

Absolutely. I mean, you worry. I mean, so I mean, obviously, in January, we got it, we have intermittent scans, and in January, you know, her scan showed that her tumour come back. I mean, it's come back, it's very small, it was three millimetres her originals tumour was 45 mil so it's very small, but it's in a very difficult place, it's sat against her optic nerve, and it's very slow growing to begin with, you know, that's got to be treated, we don't know when, because the treatment that she'll need can be damaging for little kids. So we have to wait make sure that we balanced the rate of growth with the rate of her development so that we get the timing just right for removing that. But you know, all sorts of things come into your mind you try not to think of them because you're just trying to do your best right now and being a parent for a now, neurologically disabled child and three other kids that have been through so much. But yeah, of course, think things coming to your mind like, simple things, you know, is she, how is she going to handle puberty? How is she going to handle body image? How she's going to handle social media that you know, the fact that every kid now is being pressurised into taking pictures of themselves and being pigeon holed into having to look a certain way? And, and you know, how is she going to handle that, all of that and you just hope that as a parent, you can be the best dad that you can be for her and get the balance right and get her the help and support that she needs. And, and then you know, you think, will she get married one day, will she have kids, you know if that's what she wants, you know, and you just want her to have every opportunity that every other child has. And but there are moments that get you that that that brings such a smile to your face such that heartwarming, make you very feel very emotional, like the other day in the garden. I was holding her hand and we're walking around, she loves to pick flowers and look at wildlife. And she just suddenly started running. She just took off, started running. No, no, you know, introduction dad I'm going for a run. Just off she went, she let go my hand and off she went and it's hard not to hold, it's hard to hold back the tears when you see something like that because as a parent, any parent would would just think that's normal. But for Ivy that's not an Ivy hasn't run for over a year. So when you see that happening, you just feel very proud. You feel very thankful. And and you just hope that you know, Ivy won't let anything stand in her way as she grows up, but that actually she'll face her immense challenges and her immense obstacles with bravery just as she has an be the inspiration that she is to so many others.

Sarah: 55:03

Yeah, absolutely. I think that's a really, really great place to wrap this episode up because we are going to do another episode with you which people will be able to listen to after this one, but that Ivy is finding her way through this, it's been a long journey, but she's finding her way through it.

Benj: 55:24

Yeah, absolutely, thank you.

Sarah: 55:26

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