Episode 52 - Ravi's Dream

In this episode we talk to Bethan and Gbenga Adelekan who's son Ravi was diagnosed with a brain tumour when he was just 6 years old.  Despite this Ravi, now 8 has not let this stop him from using his experience to help others and also to continue to follow his own dreams!

After his diagnosis and surgery, Ravi decided that he want to do something that would help other children like him and one day help find a way to stop any other child going through what he had gone through so with the help of his parents they created Ravi's Dream.

You can find out more about Ravi's Dream here

You can follow Ravi's story on instragram @ravis_dream

You can also find out more about our Children and Families Service on our website here

Better Safe Than Tumour

Money Advice Clinic

If you would like to speak to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org

Transcript

Sarah: 0:38

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 the brain tumour charity about what we're doing to halve the harm and double survival Welcome to the podcast we're joined today by Bethan, Gbenga whose son Ravi was diagnosed with a brain tumour. Some of you may know Ravi and his family from his single a million dreams so welcome to the podcast.

Andy: 1:08

Hello

Gbenga: 1:08

Hey there how you doing?

Sarah: 1:10

So we asked you to come on the podcast because we get a lot of questions from parents whose children have been diagnosed with a brain tumour and they're like rabbits in the headlights, they're what on earth do I say? How do I have this conversation and you've been you've been there and you've been in that situation and we can see how Ravi has blossomed through, you know, his journey, he has it not held him back at all. So we thought it'd be really good to get you on to talk a bit about Ravi and his story and how how you've navigated all of those difficult conversations, because they're ongoing, because of you know, the journey of brain tumours, don't just stop at the point of diagnosis. So do you want to just start by telling us a bit about Ravi and how he came to have a diagnosis how that all started?

Gbenga: 1:58

Sure so for a few months, so when Ravi was he was about six, kind of in the few months leading up to the Autumn of 2021, it would be now. We had felt that there were a few things that were not kind of, we just felt there was something a little bit off, and we particularly noticed that he was not hearing well on his left side, but he'd had lots of issues with buildup of wax in his ears before and he'd been to an ENT about that s we thought maybe it was just that but then he began to get a weakness on the left side of his face and it kind of got more and more pronounced, particularly kind of over the summer and thankfully, with Bethans work, we have private health insurance. So we were referred by the NHS, but we were told basically, we needed to wait and we were kind of waiting and waiting and waiting and so eventually we were we went for a private ENT appointment instead and the ENT kind of took a look at his ears and said, you know, there's nothing kind of crazy happening here. But he also was quite concerned when he saw the weakness in Ravi's face and so he suggested we do an MRI and about a week later or so we were able to do that. They did the MRI in the morning, and that evening, I got a phone call from the ENT saying they there was a growth in Ravi's brain and based on where it was located, he needed to go to a&e immediately because they were worried that if there was any kind of swelling, it could affect his ability to breathe and swallow and so you know, he could die, he didn't kind of need to spell it out for me.

Sarah: 3:44

Wow, that must have been really scary though.

Bethan: 3:46

I was sitting upstairs working I was about to start a work meeting so I often work in the evenings and I could hear, it's who gets mobile phone calls these days right? I can hear Gbenga downstairs, and I can hear in his voice that it was something terrible and so yeah, I just came downstairs and like I'm standing there and he's on the phone and I'm just like, what, etc. I'm really grateful that they called us you know, as soon as they could, but I think you know, at that point it was erm emergency stations right, and so Gbenga went, Ravi had already gone to bed, he wasn't asleep, but he was upstairs in his pyjamas trying to get to sleep and so Gbenga went upstairs and got him and I went and packed a bag. Because our daughter when she was born was she fractured her skull when she was born, had a brain bleed and so she was in a neuro ward for when she was born for a good couple of weeks and so my head was just like, right I know I know what we're going to need if we're going to have to stay in hospital for a little bit of time. So I went and packed the bag and ordered a taxi, while Gbenga had the difficult task of getting Ravi out of bed and telling him what was going on.

Andy: 4:56

Can I just asked did you have any inkling at all about them that even the word two words brain tumours or was it a complete shock?

Bethan: 5:06

It, so the thing is, we have been to the GP multiple times when when his face you know, we'd obviously been about his ears but we actually went I think three times after the initial time and the GP felt it was probably related to his ear's been blocked with wax and just some pressure building up and because they had said that and because you know the NHS is amazing, I therefore felt a lot of trust that that was what was happening. My sister's husband is a doctor and my family were having conversations, meanwhile, my sister felt confident that it was probably a tumour on his cheek or optic nerve because of it affecting his eye and so they were gently nudging us saying,

Gbenga: 5:46

Try and get a private appointment

Bethan: 5:46

Yeah, yeah try and get a private appointment and of

Andy: 5:48

Oh really, yeah okay course, we googled, right, but you google and then hope for the best and that the GP had said, it could just be the pressure. So I remember telling so many people before the MRI. yeah, I

Bethan: 5:59

I mean they were being so lovely but you know, they mean, the GP thinks, you know, probably fine and I'm sure if there was something significant, they probably would have pushed him through faster for a referral right. We knew we were looking at about nine months for an ENT appointment in Brighton so yeah, but but honestly, I knew the moment we came out of the MRI, that there was something just the look on their faces was horrible. were extra sweet to him and he did amazingly, he didn't have any sedation or whatever but it was just that feeling of that they'd seen something, right.

Andy: 6:35

Yeah.

Bethan: 6:36

But yeah, poor Gbenga had to go upstairs, and get Ravi,

Gbenga: 6:42

Yeah, it's funny, I don't actually remember what I said to him initially, I think partly because we wanted to be quite cautious, because we didn't know, we didn't know what it was and we didn't want to kind of preempt what they would find when they take a closer look and we didn't want to scare him unduly. So I'm pretty sure I just said, like the scan you had this morning showed that there's something they want tot take a closer look at and

Bethan: 7:13

Well Ravi said you said there was something growing. There was a bit growing in his brain that shouldn't be there.

Gbenga: 7:18

Yeah.

Bethan: 7:19

And that they wanted to look at it and take it out. That's what he then says afterwards.

Gbenga: 7:25

Right, right, he's usually pretty accurate with that so

Andy: 7:30

How were you feeling? Because presumably, you're you're torn between going? I wont oh, oh, dear and thinking about Ravi. So did you have time yourself to feel scared or google what what it might be

Bethan: 7:45

No

Andy: 7:45

or you just focused on on him?

Bethan: 7:47

I think we were in a taxi within like 10 - 15 minutes from when they called

Gbenga: 7:50

Yeah, I probably had more time to because once they were out of the house, like our we have a daughter who was also you know, she was asleep and hadn't been woken up by any of the kind of commotion of getting Ravi up and getting him out of the house. So I was then kind of sat in the house and beginning to, like I gave my parents a call and I sent a message to our, we have like a group chat for our family just kind of giving people a heads up that we didn't know what it was but it was something pretty serious.

Sarah: 8:25

How old is Ravi at this point?

Gbenga: 8:28

Yeah, he was like six and a half.

Bethan: 8:31

Yep.

Gbenga: 8:31

So yeah, not not tiny but still, you know, pretty young

Bethan: 8:36

With Ravi generally, you know, he's pretty adaptable. He's pretty, he looks for positive things and so he found it quite, it was quite exciting, right, getting up, you know, out of your bed in your pyjamas going to a tax, getting in a taxi and unfortunately, this is definitely my personality to that, like I kind of I over positise something like I kind of make it, try to make it as exciting as it can be, and as fun as it can be and I remember, yattering to him in the taxi and while we were waiting in the, in the entrance to a&e in Brighton being like, you know, I was saying it's fine, because, you know, they're just gonna take it out, and we'll be good and they just put you here because they want to check things. But you know, you seem like you doing find and I remember I was like, I was verbalising my trying to, like, process it. But you know, we'd we taken some fun games to play and so I was going, it's fun, isn't it, which is going to be like, yeah, we'll get some food and get some snacks and you know, you can play on the tablet, we can read a book

Gbenga: 9:37

And I think at that stage, we also were we were in the frame of mind to thinking that if it was something they could operate on, then it was just a question of whether or not they'd be able to operate and if they could operate, and it's like they could remove the whole tumour, and then there'd be some time to rehab, but then he'd be fine. You know, it wasn't, very much like not having the concept of it being something that you live with, potentially for the rest of your

Bethan: 10:06

Yeah, and I think on the phone call they said they life. thought you know, it was in the cerebellum and when we, when we were at Brighton in a&e, they put us in a room and they got Ravi a TV and he got to watch a movie and it was all very exciting and in the actual ENT consultant who had seen privately but also works the hospital came down to the hospital to see us which I'm so grateful for him because the hospital staff didn't know anything, right, because it had been done privately and so they were just told that they needed to admit him and he came down and spoke to me. And he's just like, the signs are good, it is got a nice clear edge to it and, you know, we think it's in cerebellum and so, you know, it's, it's a better version of what it could be right? And he's just like, with a nice clear edge, they should be able to, you know, remove it, etc. and so yeah, at that point, I definitely had in my head, great, we're just whip it out forget about it, then get on with our lives and so I think in some ways, it was good, because that felt quite positive. But then in the hospital, they did all these neuro tests on Ravii. So the neuro team came down in a&e and ran their standard neuro tests, some of which we've actually gotten Ravi's Instagram to show kind of how you can see some of his challenges and I was utterly shocked that I hadn't noticed the thing, right. His left hand tremors as he did something with it, he couldn't walk in a straight line, his tongue when he sticks, his tongue out goes to the side, like, as a parent you know, I would hope that I reasonably pay attention to them, yet I havdn't noticed anything those

Gbenga: 11:39

We had noticed some of those things like certainly like the tongue sticking out to the side, we had noticed that there was what as this kind of weakness of the left side of his face was getting more pronounced. I think we definitely noticed that, you know, his smile was lopsided and

Bethan: 11:55

Yeah, notice that kind of visible thing, but the thing Was Ravi, your, your, your first child as well? is Ravi, it turns out, had noticed, he had been aware of the tremor in his hand and he hadn't mentioned it. Obviously, why, when you're six, would you mention something like that? Right? You just get on with life. He's always had slightly wonky walking, he's always he's always spent a lot of time throwing himself on the floor, which we now realise was to compensate for the fact that his balance was poor. But it was a really, I found that a really scary moment, because I was just like, why have I not noticed this? Yeah.

Andy: 12:30

Yeah so you as parents are like, there's a six and a half year old developing you, there's no rulebook is so that might be why it didn't immediately seem obvious, because you're thinking, well, I've never had a six and a half year old kid before so what would I know?

Sarah: 12:44

Hindsight is a brilliant thing isn't it you know I speak to parents all the time and they put those pieces together afterwards, in hindsight, but it's quite common that parents now I look back and I can see all these little things that at the time didn't really amount to anything, but I just thought that was you know, kids have their funny ways they are quirky, they're just

Bethan: 13:05

Yeah,I remember his three year three year check when they were checking his walking property, everything I remember that one, and he Yes, he was running around and throwing himself on the floor all the time. And she's just like, he's walking totally fine, because why would they check if he could walk in a straight line? Right? That's not something you would do. But even at that stage, he was already obviously having balance issues that he was compensating for. But yeah, hindsights a great thing. So, but then we spend the night in in Brighton, but Brighton's neuro team. Neuro work is looked after by either Southampton or kings and so we were just told we were just waiting for a bed to be available for us in Kings and then the next day they whisked us up to Kings College hospital London where we stayed

Sarah: 13:52

What did you, what did you actually say the words brain tumour to Ravi or did you just actually just see what something growing your brain what was? How did you explain?

Bethan: 14:03

I think we I think we use the term, well, I personally use the term brain tumour quite early initially it was growth, there's something growing on it, and then I explained that in your brain is called a brain tumour and I think Ravi doesn't have a lot of knowledge of tumours. So I know some children obviously have family history of tumours, so they're particularly it's a cancerous tumour that's going to be very frightening for them. But for Ravi, there wasn't any label attached to it, any fear attached to that label for him

Gbenga: 14:29

Yeah, I mean, I guess I waited for the medical professionals to start using that word before I used it with him. Just because again, it's like I didn't want to, I just tried to try to give him as accurate a representation of what was happening as far as we knew as possible. And not kind of even though he didn't have one of the good things about him being so young is yeah, like nothing was saying he didn't have a lot of a concept of like, why a brain tumour, it could be a really kind of dangerous thing.

Sarah: 15:05

Did he understand that, that was what was causing the difficulty with his face, his weaknesses, his face? Didn't he make that connection?

Bethan: 15:13

So well, obviously afterwards, he did. I don't think you know,

Gbenga: 15:16

once it was explained to him

Bethan: 15:17

once it was explained to him and once he'd done the neuro tests, and he could see that it was all connected, which I think in some ways, you know, he obviously had these things going on, right you know,whilst he'd not talked about his tremor in his hand, I'm sure he'd been thinking about it and actually also over the summer, he'd had a lot of problem regulating his moods and behaviour. It was a very tricky summer holiday,

Sarah: 15:39

but it is how much we understand as adults that our brains control all our bodily functions and our personality. But actually six and a half, how much did he understand that how much his brain was responsible for what with the tremor in his hand in his face? You know, having?

Bethan: 15:55

Yeah, he's, he's a big reader, he has a body Book and I think, you know, that bit wasn't hard for him to comprehend because he's, you know, he's learned about that and learns how the brain controls things and stuff like that. So and he yeah, he's a reasonably bright boy, which in some ways helps because he picks up things, but it also it's difficult because he picks up on more, and asked really difficult questions,

Gbenga: 16:20

He's was very sensitive about being treated younger than he is or feeling like he's being treated younger than he is. So conversations right from the beginning, any conversations with any of the nurses or doctors, consultants, he really hated it, if they spoke to us, and didn't directly kind of speak to him and include him in the conversation. Similarly, I think if we had tried to just give him a really vague kind of top level explanation or like, use a lot of kind of euphemisms for things, I think he would have felt that we were babying him a little bit. So

Bethan: 17:00

And we've never spoken to him like that right

Gbenga: 17:01

Yeah,

Bethan: 17:02

We've, I don't think it necessarily was a conscious choice. But we've that's just how we parent, like we talk honestly, about things. Maybe that's just because we were not nuanced enough to be able to change it for children. But

Gbenga: 17:14

But then yeah, the balance, the balance is obviously, you know, like we've been saying a few times, you don't want to, you don't, want to give them information that might later turn out not to be correct, because then that can erode their trust in what you're telling them and you also obviously need to actually be sensitive to the fact that he's, you know, six and a half years old at this point, or even now, so he's eight now, we always need to remind ourselves that he's a child, you know, so we can't kind of burden him with the level of information, necessarily, that you'd give to an adult, you need to be kind of sensitive to certainly like sensitive to the way you present it.

Sarah: 17:55

But what you've just said that it's quite important that actually, with something like this, this is an ongoing thing that him being able to trust you and his doctors and stuff is quite important and if you aren't giving him accurate information, you're telling him one thing and then turns out to be something else. This is a journey for him that he's now on but he needs to be able to trust you when you talk to him about what's going on, he needs to be able to trust his doctors and how quickly that could be eroded if you handle it

Bethan: 18:27

And it has been with with certain medical professionals that it has been because they haven't been truthful, but also so really simple thing that has turned into a massive thing in our lives getting cannulas put it in right, no one likes them. No one likes blood tests or needles are Canada's even if you're fine with them, you don't enjoy them, right. But when we were in Brighton, they put a cannula in and they use the magic cream and they told him this cream will stop you feeling anything. Now firstly, it doesn't stop you feeling anything, it might numb it and make it less painful but but in his he's very literal, very, very literal and to tell him that it was the first time he's had anything like this, that the cream would stop him feeling anything and then the problem is the cream didn't have much of an effect at all. I'm exactly the same the whatever brand the NHS uses doesn't have an effect on us, we now use tattoo cream, right? So it was totally not numbed and therefore it hurt a lot and he wasn't prepared for it and so then he didn't trust them as to what they were saying and we had the same thing again, when somebody was going to do another cannular when we're up in Kings, another nurse was like Ravi was just like will you do on free and she was just like, yes, I'll do it on three and then she did it before three, which I know is an old school technique for children, like do it before, but now he no longer trusts them and every time he's just like, but you lie, you say you're going to

Sarah: 19:50

Yeah, it's just hard isn't it as like you said, it do something and it's it's this is one of the biggest challenges we have with medical things with him because of these small instances that he thinks that he can't trust them. comes from a good place but actually a lot of children are like Ravi they are very literal and I think you know, that's that's a part of an age thing, isn't it that children do take things quite literally.

Andy: 20:18

You can let Ravi know that you can get to my age and still don't like cannulas at all.

Gbenga: 20:24

Yeah

Bethan: 20:25

Yeah,

Andy: 20:25

They put them in just above the elbow now which helps they used to put them in the back of their hand. I think it wasn't that was just painful as wel but. It sounds like you didn't, did you sort of decide between you anything you were going to keep from him? So that you felt that might be a little bit too sensitive or too difficult? Or were you just sort of winging it in a nice way?

Bethan: 20:47

Yeah, we didn't have the time to have that conversation, that's the problem that if you found it out and then needed to talk to your child about it, we 100% would have sat and go, how are we going to talk about it? What are we going to say? But because they said we had to get him to a&e straightaway, which just made you feel like you don't have the time to take that time to think we had to tell him something, then

Gbenga: 21:08

it was also a slightly, the information was being kind of updated as we were going along and often because we one of us had initially anyway, one of us had to be looking after Mia our daughter. We weren't necessarily at the meetings with the, with the doctors at the same time and even if it was just the case that Bethan was up in London with Ravi, and my parents or Bethans, parents, just come to kind of look after Mia and I was like, on my way up to London, and it was happened to be like, while I was on my way up that that was the moment where the doctor was the surgeon was doing their rounds, or Yeah, we didn't actually often have that many of the meetings with the surgeon and the doctors were we were both there.

Bethan: 21:59

And we only didn't we only have one meeting without Ravi before surgery, and we had to sign off.

Gbenga: 22:04

That was the other thing, yes, he was present for pretty much all as you know, to a certain extent, is the way it should be because it's his his team or his body, his treatment. But yeah, we found that we didn't actually have any time to ourselves apart from very occasionally, when he was in the hospital, he'd go off. I mean, this was after the surgery, he'd go and have physio, and we wouldn't be there when he was a bit stronger and he did hospital school a couple of days, because he was missing school so much, where they'd kind of take them off for an hour and a bit to do some learning and a different bit of the ward.

Bethan: 22:47

But then you and I would mainly be working right, we were trying to balance work at the same time. So we didn't have you didn't have time to sit and talk together.

Sarah: 22:55

Was it a conscious decision that you two made to have Ravi in meetings? Was that something that you just decided to do?

Gbenga: 23:04

Never, it never occurred to us that we want to have meetings without him to be honest,

Bethan: 23:09

He would get very angry with that and he would, and that would erode the trust and I think from first moment, it was important that it's it's his body, it's happening to him and he needs to also own it, right? It's, it's not something he can detach from, and where, wherever possible, to allow him to make decisions where he can make decisions, right that, you know, and even if it's like what you're having for lunch, right to make sure that the experience isn't just a you're being put there and I think Ravi is definitely, you know, he felt that lack of controls.

Sarah: 23:43

That's why I asked the question because I work with slightly older and one of the things that they sort of say is that feeling of loss of control, and not being in control is something that they really struggle with, and have struggled with being young people that have gone through this, that a lot of them don't even know what happened to them as children. They don't even know what the treatment was they had they, they don't know whether they had radiotherapy or chemotherapy because all of those conversations were done away from them and then they, you know, there's a lot of feeling of trying to regain control of their body, you know, because this thing has happened to them and all of their choices have been taken away and for good reason, in some senses that you know, your child can't necessarily make all of their medical decisions, parents do have to make those decisions. But to not feel part of it has an impact later down the line and that need to be in control.

Bethan: 24:43

Yeah, I think also just understanding why you need to, it's not as fun as it is, I think is important, but Ravi Ravi that he saw the MRIs that he could see what they were trying to do and honestly the team up in Kings were brilliant, particularly his surgeon, Mr. Sabian spoke to him on a level let them ask whatever questions and yes, whilst keeping the sensitivity that you're talking to a six year old child was really honest with him and the anesthetist, Ravi was very anxious about that. That was the biggest thing he was scared about, he was scared that he wouldn't actually be asleep or that he would wake up natural fears. She spent ages with Ravi just you know, I think we left them just talking it through and how from a very, very literal point of view, she would make sure that he did not wake up and that he was asleep, right and he needed that facts, he needed the science to kind of ground him in what was going on and I so appreciate that honesty, because whilst Ravi does struggle in exactly the same way now feeling that lack of control unless you know, something that he will continue to feel, trying to give him as much information, knowledge and ownership as we can, I think is important.

Gbenga: 25:55

Yeah,

Andy: 25:56

Can I just say as well, I hope you fed that back because many adults, including myself, virtually don't speak to the surgeons because a hard intellect low on personal skills. I guess that's the way you want it to be.

Gbenga: 26:10

You want it that way around, for sure.

Andy: 26:11

But I don't remember talking to my surgeon at all, before my surgery or the anesthetist so it sounds like they really made an effort and that's it. I hope they're doing that with all their patients not just

Bethan: 26:23

No we're still in touch with them, so we've come to various events that Ravi has done and obviously we told them at the time, but we continue to tell them how impactful that was in his experience.

Gbenga: 26:34

And I feel like maybe with children, they do spend that extra time because they know, you know, for an adult to kind of scary situation. But for a child, there's so much more about it, they don't understand and like you say that kind of loss of control and a whole new bunch of grown ups who are coming in, and they're, you know, the grown ups are telling your grownups what needs to happen, you know, it's a very kind of disorienting experience for them. So, yeah, I would like to think that it wasn't just because Ravi was kind of receptive to it that they do that with everyone all the kids certainly

Sarah: 27:11

How long was his surgery?

Gbenga: 27:13

That was about 10 hours. Yeah, so it was it was a very day, a very surreal day, because it kind of got him in super early. And then told us to leave the hospital building, because leave the hospital building but not going too far, obviously, but you know, what they didn't want, which I think they have, you know, have experience of his parents kind of, if you're hanging around in the building, then you will not be able to resist the urge to go and kind of keep asking questions about how it's going.

Bethan: 27:49

And you need to keep busy,

Gbenga: 27:50

You need to take your mind off things.yeah,

Bethan: 27:53

So we had a wild day in London, we we went for lunch,

Gbenga: 27:56

We went to the Chelsea club shop to by a special Ravi's, even though we support Newcastle but Ravi's favourite footballer is Mason Mount. and at the time he played for Chelsea so we went to the Chelsea shop and got him a Mason Mount shirt, that was the kind of yeah, it was gonna be his present for going through that

Andy: 28:15

You didn't buy him a Man United shir then?

Bethan: 28:17

Well, Gbenga's his dad sports man united, so um we won't we brought him some pyjamas. We went to the cinema, we watched James Bond movie. We went to one of our favourite chefs restaurant, Tim Anderson's restaurant, which we adore the food, obviously, we didn't eat huge amount, may have had a couple of glasses of wine. And then when we went out we were told you know roughly what time we should come back and so we headed back and then

Gbenga: 28:42

We came back and like we still had to wait for like an hour or so

Bethan: 28:44

Yeah, so then we just watched him, watch some TV on our phone or whatever and we were like lounging on the sofa. And I remember nerves coming and going, oh look at you all relaxed.. It's like you have no idea what's going inside. We were chilled out watching something on our phone while falling apart inside. Yeah, it was a pretty tricky day.

Sarah: 29:03

How is Ravi doing now?

Gbenga: 29:04

So his tumour is stable, that's the main thing like we've had a couple of, well, what seems to us to be scarce because we'd like for example, earlier this year, in around March, he suddenly had a week where he'd wake up and like, pretty much exactly the same time each morning he'd feel sick, and then be sick, and then be fine. That kind of very little warning, then he'd be sick, and then he'd be fine and after the kind of third day of this happening in a row, his like being sick like that can be a you know, warning sign stuff going on in the brain. So we kind of called initially, we called Brighton and they did they bring him in? They brought him in for neuro checks, right?

Bethan: 29:54

Yeah, brought him in for neuro check and did some checking but also his face after surgery seemed a lot better and then three, four months after surgery, his face was possibly worse than it had been even before actually, yes, definitely

Sarah: 30:06

And that must be hard for Ravi because he presumably worse than thought having surgery would solve that that he would.

Gbenga: 30:16

Well, I think the main thing for Ravi also is that he maybe still to this day, but certainly like in the initial year after surgery it's like he felt like surgery made him worse and not better, because a lot of what he was getting over was the surgery, actually, you know, such a big surgery and to get to the tumour, they had to, you know, they had to kind of hurt parts of his brain that would kind of heal themselves. But you know, to get to the tumour, they did have to kind of hurt him to get there.

Bethan: 30:53

And all of his issues with his site have been only since the surgery so yes in his mind, everything's just got a bit worse.

Gbenga: 31:01

Yeah so he, I feel, even though as he gets older, he does as he gets older, and I think, as he's talked about it more, because he sees a counsellor at school and we've had some counselling as a family as well and just as he gets more able to process things and gets a bit further away from it, and also through, because the fundraising work that we've done, we have he's done kind of interviews about it, and kind of has had to think about the narrative of like, where he was then and like where he is now. I do think he feels like it was a good thing and he feels like we had a checkup with his neurosurgeon, Mr. Sabion last week, and you could definitely see that he felt very proud that Mr. Sabion was so happy with the way he you know how he was doing. But it's been a journey getting to that point, I think he definitely has felt very frustrated that the surgery was supposed to make him better and in many respects, it's like,

Bethan: 32:05

Yeah, in his mind, it hasn't made it better made a bit worse. But then we'd had to have the difficult conversation and pointing out that actually, it saved his life. Right?

Andy: 32:14

Did you feel that at all as well just out of interest about the surgery, or were you prepared for the fact that he might be different after surgery,

Gbenga: 32:21

I think apart from the thing with his eye, which was a, we there was a breakdown in communication somewhere and even though he was he had checks with the eye hospital at Kings before he was discharged, no one told us that he would be susceptible to eye infections because he had reduced sensation in his eye. So what we should have been doing, as soon as we left the hospital was putting lubricating eyedrops in and taping his eye at night and no one told us that. So he got an eye infection and pretty much within two or three days of coming home and then he got an ulcer on the surface of his eye and that kind of badly, his cornea got very badly damaged and then we were kind of then in damage limitation mode from there and

Bethan: 33:13

which causes his eyes to turn in because he can't see through it, which therefore, adds to him feeling like he looks worse, right. And so and that was a big, negative thing. But I think that initial pushback of like, yes, it may be worth it maybe worse. I probably honestly, I probably said it the first time in in frustration. Listen, Ravi, it actually saved your life, because of where it was it could have done is I probably did say in anger and frustration. I'm not going to lie you know, I find it, I find it very hard because for me, you know, I didn't expect him to have all these side effects afterwards, I didn't think everything would be perfect. I wasn't, that's as soon as they said they couldn't remove at all. Initially, I thought as soon as they'll get the whole thing out and everything will be back to normal is what I thought and when they actually said no, we can, you know, we're not gonna be able to remove it all because of where it is. I was just so this isn't over. Great. Yeah. But I didn't honestly expect the challenges we have had and I think I've you know, it's only it's only now we're, you know, almost coming for two years. At the first year anniversary, it was really helpful everyday, Ravi, you asked to see the pictures of what happened a year ago that day and so we, you know, thankfully, due to, you know, the world's obsession with taking pictures, likewise mine, we were able to look through a photo diary of what was happening every day through that period, or we could talk through it, which really, really helped because it was a very emotional process to go through and very upsetting. But then I can fill in any of the blanks of what was happening on a certain day or why something happened. We talked about some of our stories about it and how we were feeling at the time and it felt very cathartic. Now we're coming to the two year mark again, I'm feeling like the same kind of weird emotions of the anniversary. But also my brain is now starting to think long term, like Ravi has just learned to tie his shoelaces, he's been trying so hard. but his tremor makes it tricky and I keep on thinking there's going to be a lot of things forever, that he's going to find hard. And I don't think my Yeah, he you know, and I don't think my brain has processed that yet and I'm not sure I'm ready to process that yet. I'm not sure he is either.

Sarah: 35:22

But there are ongoing conversations that are going to be part of your life now aren't they have especially as he goes through school and things and he's comparing himself to his friends who presumably can tie their shoe bases, it's probably not a big deal but for him, that's a really big deal, isn't

Bethan: 35:40

Yeah and also talking about the fact that his tumour it? is stable right now, and they hope it would be nice to be stable for the rest of his life. Right. But we know that no one really knows what goes on with tumours and so I don't want him to think, great all I now have to deal with is my side effects. I think it's important that whilst he gets on and lives his life, that it will be a really horrible shock, then if he hasn't prepared himself for at some point, there could be growth.

Gbenga: 36:06

Yeah.

Andy: 36:07

It's a tough balance though, isn't it because you don't need to be fearful of the future.

Bethan: 36:11

Yeah.

Andy: 36:12

However, yeah, there's a realism there isn't there? Yeah, I can, that's a tough one.

Bethan: 36:18

It's about saying, like, you know, we dealt with it, right, ike, we got through it before, if there's growth, we'll, we'll we'll deal with it again, in not in a, everything's going to be fine, but as in, we managed to get through what had happened and, you know, here we are now. So you've got to feel that that robustness, you've got to play on that and kind of feel like, whatever happens in life, if it's Newcastle, getting relegated, we will deal with it as a family and a lot of ice cream so it's fine right?

Sarah: 36:50

Ravi's Dream and you know I want to talk a little bit about that, but I don't know what came first. So maybe you can kind of talk about that, but Ravi's Dream's obviously been a really big thing that's putting him out there publicly, which obviously, the way he looks and stuff he's had to confront that because he's been on TV, he's done videos, all sorts of things and that's very difficult when you're self conscious about how you look. First of all, what came first, how did you decide to set up Ravi's Dream? But also how do you think that's impacted Ravi having that as a focus as a positive thing that's come out of this.

Bethan: 37:27

Yeah I mean, the the idea behind it was is you know, it's from Ravi right, and it comes from his attitude of how he lives life and you know, we've told this story many times, but

Gbenga: 37:36

Well, I'm just going to stop you there Bethan because I think the idea actually came from you, in the sense that

Bethan: 37:44

The idea to do something

Gbenga: 37:45

Bethan had, Bethan had a birthday, maybe about six months before the anniversary of Ravi's surgery and for her birthday, she asked people to donate to the brain to charity instead of buying her present and then as it got closer to Ravi's anniversary when Bethan asked him what he wanted to do. He was inspired by Bethan's example and so he said also wanted to fundraise

Bethan: 38:08

And yeah, but we weren't talking about we were talking about like a positive attitude. We were genuinely talking about Newcastle's terrible season, because we were doing so badly and I was, I thought our defence hadn't been as bad as it normally had in the match that happened that day and so that's what we were talking about. I was just like, it doesn't That's such a good story, though. The way you describe matter, like, yes, we're still in the relegation zone but there's always a silver lining. Some of the defenders weren't diabolical today and so then I kind of say, you know, there's always a silver lining and every bit of bad bit of life, there is always a silver lining, and he just said, what's the silver lining of me having a brain tumour then, and I was sitting on the toilet, chatting to him, I was in the bath, obviously not on the toilet paper sitting on the toilet seat and I was just like, oh my goodness, me. I just sat there for a few seconds and then I was just like, there's lots of, you know, you can find your sliver lining, like there's lots of things you can do given your situation, because people will pay, people will listen to you more, because you have a story and experience to tell. that, because that's, I think people who don't know you or him Which now Ravi now has internalised as people will listen to you, more you have a disability, which is fascinating would think, what was the epiphany of doing what he's done and he was just like, What can I do? I was just like, what you could you know, you could do cake sale, you could you could raise money, you could, you could go and tell your story to people. So they're aware of symptoms or whatever and that's how the idea came about from this idea of trying to come up with something positive from something negative and yeah, he and I love the image of it coming about because you're in chose to do a song and here we are. the bathroom chatting about stuff. That's that's so real. That's brilliant.

Sarah: 39:45

And you say oh yeah, and that's how the the single come about, I mean, that's played it down a little bit because it wasn't just like

Gbenga: 39:51

Well, well so, the thing the thing that we found was at every stage people in our kind of our immediate community because we in our, the neighbourhood we live in Brighton, there are a lot of people who have worked in music before work in music, now, people who work in kind of film and TV or have done in the past and so, as soon as Bethan started mentioning this idea to people were just very, very keen to help out in any way they could and so it was a case of there were a couple of like one key friend who's the mum of one of Ravi's best friends from school who took it on as a project to help us make the video and then pulled in people that she knew who would also be able to help and then I worked on the music side and it was the same thing. As soon as I started mentioning the idea to people, they were very happy to give up their time. So yeah, kind of at every stage, people connected with Ravi's story, I think, because they the idea that you want to make something positive out of a negative experience, I think it's quite, even if you don't have a brain team, or you can relate to that sentiment,

Bethan: 41:05

And also giving him a way to own his story, hat's always something that's for me, it's really important that it's going to be part of him for the rest of his life and he could just lock it in a box and if he wants to do that, when he's old, that's fine. But right now his personality is isn't that type of personality and he likes talking and he likes connecting with people and obviously, when he went back to school after his surgery, all the questions from the children, right, you know, that's people are gonna ask questions, and to be able to help him own it and have answers that he feels comfortable about it but having a positive narrative to what was going on his life right now you know, I think that was important to me that we kind of tried to help him be in a positive headspace

Sarah: 41:47

Because you document literally everything don't you. I mean, you've been doing, even the tieing shoelace that was I think yesterday, you posted that. All of those things that you documented so that the children can see other people are having that experience and do you think that helps Ravi to own some of the, you know, the difficulties, he has been able to kind of think that it might help somebody else?

Bethan: 42:13

Yeah, I mean, he definitely has that kind of caring nature and they're at the very beginning I remember at the very begininning one of the first comments on his website, when the video came up was a boy who also has a facial palsy, and he was so excited to see a child who looked like him doing something like that and that that was, you know, a really nice thing, but Ravi is now connected with a couple of other children who have brain tumours I think that's helped. But also this is there's this guy Joel in Australia, who has a very similar tumour and very similar challenges, and Ravi really enjoys watching his instagram videos, which are all about exercises to help and how he's overcome them.

Gbenga: 42:46

He's a grown up,

Bethan: 42:46

He's a grown up yeah

Gbenga: 42:48

He's a personal trainer, I think

Bethan: 42:52

Yeah,

Gbenga: 42:52

Or well he used to be a personal trainer.

Bethan: 42:54

And yeah, that's that's sharing experiences. I wasn't sure about it and initially, we didn't, you know, didn't meet up with anyone else who had a brain tumour because I wasn't sure if, if he met someone who was finding it harder, whether that would make him worry, if he met someone who had found it easier, but that made him think why am I finding it so hard, but it's naturally happened and he seems to connect with it quite well and it kind of almost not normalises it, but it makes him feel like he's not the only only one

Andy: 43:22

That's really useful for other parents as well and also the fact I guess for Ravi, he can see older people with with a similar symptoms and similar challenges shows that there he could still have a long, positive, you know, full life ahead of him, which ultimately, I'm assuming will give him a bit more hope.

Bethan: 43:40

Yeah, especially a physical guy being a personal trainer, Ravi loves anything physical and sport. So he's like, yes, this is, you know, this is great.

Gbenga: 43:48

Yeah, sorry, what you were saying about his self image, I do think it you know, that's been a journey, too and I would say he definitely still struggles with the self image, but it has helped his confidence to feel like he can put himself out there and he has kind of just as much right to, like, have videos made of him and be out kind of doing interviews with people and that kind of thing. It's definitely

Bethan: 44:16

He chooses was put up, by the way, like, obviously, we you know, there when I put up posts, which is like a fact, obviously, he's not involved in me deciding what fact about brain tumours to put up but the shoelace is one of just like, Should we put video about that because it shows like, you know how you've done it and stuff when it's important that he is getting to own what is where his face is so and any interview, we run through what to be like, obviously, you can choose that and he just likes the experience, right? He likes doing different things, he likes to meet people. But he also is found that he read through the comments when people say, Oh, you're so handsome and, you know like and you can see there is a little cheeky smile on his face it definitely he is noticing that people are being positive about how he looks even if he doesn't feel it.

Sarah: 44:58

Do you worry about any negative comments, though?

Bethan: 45:01

Well, first of all we haven't hand any

Gbenga: 45:03

Yeah well the thing I think the nice thing about it, I think has been that it's mostly been something I would say it's been very kind of his social media kind of presence. It's like very, either kind of brain tumour or community focused largely, or people who are kind of into music or they're into one of the artists that featured on his song and that's how we've gotten into it. So I think we're not, you know, we're not anywhere near the level where he's going to put up a post, there's going to be loads of trolls who want to post negative things just to kind of get a reaction,

Bethan: 45:39

I think we'd probably stop it,

Gbenga: 45:40

I think,

Sarah: 45:40

Do you worry about that in the future, because for young people social media is

Gbenga: 45:46

Very much so, yeah

Bethan: 45:47

Yeah, and I think, you know, we are working towards this target of fundraising, right and in my head, when we get there, we pull the plug on everything and, and that's the target that we're working towards and it will feel an achievement, when eventually we get there at any point, Ravi can pull the plug on it at all right, like, probably every few weeks, I'm like, you still wanna be doing this, you still wanted to fundraise, etc. And if he decides he wants to pull the plug, we will. But I don't want this, his social media profiles right now or not his social media profiles when he's an adult and a grown up in a teenager, right? They are for this period of time where our focus or positive focus is to raise money and raise awareness and when we get the target, I think we will go in line in a darkened room for a bit, and then he can decide then what does he want going forward? But right now, it's part of what the focus is for him. But yeah, I think we would, you know, I definitely would pull it if it started getting negative,

Gbenga: 46:42

I think also, his exposure to it is pretty, it's still pretty limited, you know, because it's kind of, we'll make a video with him and we'll check, he's happy with the video before we posted, but he's not kind of grabbing our phones and scrolling through loads of other kind of people's profiles and things.

Bethan: 46:59

He has no idea how many people would like something or what that even means or anything like that. Right? That is not in his

Sarah: 47:06

It will come in time.

Andy: 47:07

I wish we were all like that

Bethan: 47:10

Yeah, hopefully, by the time he gets to the age where he would be maybe it'll be a slightly different world online buut who knows?

Sarah: 47:16

Yeah,

Bethan: 47:16

it is. It is very important that, you know, we're not putting anything up that he's not happy with, but also that it is for this period of time, right, this is not his own dialogue, this is this projects dialogue.

Sarah: 47:27

But it's a good thing for him, isn't it how it's been received, because this is quite a crucial time for him in his, how he sees himself. He was old enough that he's got a memory of who he was before and sometimes that's what's really difficult, isn't it that knowing what you were like before and that comparison of the

Gbenga: 47:46

Yeah, but I think the thing is Ravi, like Bethan was saying, when, like he, you know, he told us he did notice he had a tremor in his hand and hadn't told us about it, you know, like, I think Ravi had felt within himself that something wasn't right to. So I don't think he feels about he feels like obviously the surgery was a definite kind of a before and after the surgery. I don't think he felt like, he was totally fine before that and like, now he's not and I think he also doesn't necessarily, I feel like he's, he's very optimistic for the future and like, we definitely want to hold on to that and keep him feeling that way because so far, it hasn't really stopped him doing anything that he wants to do.

Bethan: 48:33

He's accepted, he's not going to be professional footballer, that's, that's one of the only things that is crossed off. But I was just like, 90% 99% of the people you've ever met will never be a professional footballer. That's, you know, the reality, but your balance issues are probably, we have to accept that's not that one. But the rest of the world is your oyster, and you can do whatever you want with it.

Gbenga: 48:52

Yeah, you never know, where professional sports is going to be in 10 to 15 years.

Bethan: 48:55

This is very true.

Sarah: 48:56

Exactly and what do you you talked about the future, and you've talked about your goal of fundraising and stuff. What is the future? What does that look like in terms of Ravi's Dream and what you're doing?

Bethan: 49:11

Yeah I mean for his the future for his fundraising, obviously, we're still.

Gbenga: 49:14

So the goal is the goal is £250,000. We've maybe haven't said that, so so far, we're at 82, 83 which is amazing and as mostly, there have been a few people who've made big donations and kind of companies that have done fundraising on Ravi's behalf. But it is like mostly just individuals making £10,£20, £30 donation is amazing, but still quite a way off that£250,000

Sarah: 49:46

What's that money What's the goal for what you aim for?

Bethan: 49:50

So it's been split between The Brain Tumour Charity and Brains Trust, because Ravi chose, Ravi chose who we wanted to fundraise for and both the charities sent him support packs when he came out of hospital and for Ravi,that's the first real thing that was someone just going yeah, it's been a bit sucky you know, like, I'm an external company individuals like, this is something because we know you're having a tough time. Obviously, he's just had it from friends and family, but they it really connected with him and obviously we then talked about research, because for Ravi he wants he wants a world where people do not have to have brain surgery like he does. That's the actual root of it and he knows that these the charities do work in that area and so that's really what he would like his money to go towards. But we haven't specified it with either of the charities, right? It's just being split 50/50 and we know that even like £10 will make a difference and it was a long term goal, but it was never going to be knocked out of the park in one go. But at the moment, we half the stuff we do is raising awareness. So specific things just to kind of put it out there and then some things are more monetary base. So we are working on a an event in November, which will be a big fundraising event nd in the meantime, we just kind of keep up with sharing his story, sharing his experiences and his learnings, and trying to support the amazing brain tumour community that we've met, you know, online, like, it's, it's an amazing, it's an amazing world, that's the best thing about social media, right, that you can really be connected with these people and, and feel like you've got each other and you can you can talk to each other. But yeah, well, we'll come up some other ideas after the one in November,but that one is that quite a big one

Sarah: 51:29

And you've got a website and you've got social media, I'll link to all of that in the show notes so that if people, anyone listening, does want to find out more about Ravi and Ravi's dream and all the work you're doing, then they can or they just want to follow him on Instagram to track his progress, then I'll link all of that in the show notes that people know where to find you.

Bethan: 51:50

Thank you.

Sarah: 51:51

Finally, just to wrap up, what advice would you give to a parent to any parents now that are listening to this and that just you know, in that rabbit in headlights moment of oh, God, this has happened? How do I what do I even say?

Bethan: 52:07

I'd say no, your child, every child is different nd we can say our situation but you know what is best for your child to be as honest as you can don't, don't ever tell something that you can't back up with truth. But you've got to go with what the child is that the way that the child is dealing with and how you know that they deal with information and things like that.

Gbenga: 52:28

And be kind to yourself, I think, like we were talking about how, with hindsight, you will feel like oh, well, I should have seen this or I should have seen that and like similarly, you will look back on that first conversation you have with your child and probably think well, maybe I could have said this instead of saying that and with all things to do with parenting, you're never gonna get it perfect. If it's coming from a place of kind of love and support. If you make mistakes, that's fine, you know, just be yeah, you need to give yourself, give yourself a break.

Sarah: 53:03

Absolutely. That's such good advice. That's good advice. I think you're right. You know, it's easy as a parent to beat yourself up. Or, you know, with hindsight, look back on things, but in the moment, you do the best that you can in the situation that you're in

Gbenga: 53:16

Yeah, absolutely.

Sarah: 53:20

Thank you both so much for coming on and taking the time to share yours and Ravi's story.

Gbenga: 53:25

Yes, thank you.

Bethan: 53:27

Thank you for having us

Sarah: 53:28

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