Let's Talk About Brain Tumours
Join us as we talk about all things brain tumours with those who have been diagnosed, their friends, parents, partners and children as well as with researchers, fundraisers and advocates. Find out how The Brain Tumour Charity is working to improve outcomes for those who are diagnosed with this unforgiving disease.
Please Note: We recognise that everyone's experience's are unique. Our guests are sharing their own personal experiences of diagnosis, treatment and care. These may differ from yours or those of your loved one.
Let's Talk About Brain Tumours
Episode 15 - Part 1 - A Parent's Experience: Surviving Brain Surgery Day
TW: emotionally challenging content
Our hosts talk to Kerry whose son Rowan was diagnosed with a brain tumour shortly after he was born. Kerry shares what it was like from a parent's perspective to see her child in distress when other people couldn't see that anything was wrong and the journey a parent goes on once a diagnosis is made.
If you are a parent listening to this and would like to talk to someone about what you're going through, you can contact our Children and Families Team by emailing childrenandfamiles@thebraintumourcharity.org or call our support line on 0808 800 0004
You'll find more information about the Children and Families Service here
If you would like to speak to a member of our Support Team you can call 0808 800 0004 or email support@thebraintumourcharity.org
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 and brain tumour charity about what we're doing to have the harm and double survival. Welcome to the podcast. In this episode, we'll be talking to Kerry about her experience of what it's like as a parent when your child gets diagnosed with a brain tumour. So welcome to the podcast. Kerry, thank you for coming on. And perhaps we can start with you telling us a little bit about Rowan's diagnosis.
Kerry:Oh, hi, Sarah. Thank you. Rowan was diagnosed at 10 weeks old, it wasn't a surprise that he was going to be diagnosed with something at that time, I was expecting a syndrome, or possibly cerebral palsy to be diagnosed, but not a brain tumour that wasn't on my radar symptoms had been present from birth. But as baby develop has grown and developed, it was new kinds of indicators that not all as well, with each development merely in terms of its motives, girls move little legs not moving in sort of symmetry. And there's lots of issues around drones sort of swallowing and distress around regurgitation that seemed to be beyond normal baby reflux, which you know, was the initial diagnosis, as well as hearing loss and sort of Stride or because of the sound of his little cry at that time was suggesting that there may be some difficulties, and also with some signs of paralysis on one side of his face. So there was those indicators right from the get go On day one of Rowan being delivered.
Sarah:So you said you expected some some diagnosis? Were there signs in the pregnancy? Or was it
Kerry:no no signs of pregnancy? So it was just
Sarah:after he was born? And how soon after he was born? Did you notice those kinds of straightaway or?
Kerry:Yes, yeah, it was, it was obvious, there might be some little quirky differences straightaway. But to be fair, I put some of both down to guessing there, for me, not quite believing what I saw, because nobody else could see it at that point in time. And then the following day, so literally, he was 24 hours old, we were due to be going home. And before we do the paediatrician comes to do the baby checks, which is completely routine. And you get told the baby's got five fingers on each hand and five toes and all these good to go. And it became quite clear at that baby check that the paediatrician was concerned.
Sarah:And well, it's not your first child, is he? So you had something to compare that to at the time?
Kerry:Yeah. And also as a health visitor, so I was well used to newborn babies. And actually, I was doing a mixed role at work at that time, and half of the week I was Health Visiting. So I was very used to being around new babies.
Sarah:So what happened next? How did you find out about his diagnosis?
Kerry:So we were referred to a specialist who was trying to formulate what some of Rowan's difficulties might be, within that, they suggested having an MRI, they were unsure as to whether or not it was necessary. And I completely understand that because obviously, we're vulnerable babies, you know, there's always a small risk anyway, with having a general anaesthetic. You know, it wasn't for certain what the value of maybe spotting a little system via which might explain some of these symptoms, but not others would be so and that was most likely diagnosis at that time. But there might be a little system here that was putting pressure on some of his facial nerves.
Sarah:How will you cope with that, because you literally just had a baby, and suddenly you're, you're being faced with something's not quite right.
Kerry:It was really fortunate in a way that we'd had two weeks of settling on a really good medication for our and we found one. So yeah, he was given some new medication that fit and better at about seven weeks old. And it gave him under some respite from his major symptom, which was the reflux which was causing him significant distress, which meant that he was free to be able to, you know, that key developmental milestone of smiling is so you know, wonderful. When he was free of pain, he was able to smile, and we had a really normal two weeks. And I feel blessed that we had that normal two weeks, because, you know, we'd had a really distressed baby up until that point, and we were going to have a very distressed family a few weeks later at the point of diagnosis when he was nine and a half weeks. So we were in the best possible place. And I think, you know, we'd made the decision together as parents that we would have the MRI, and we trusted that, you know, all would be as well as can be in it's just the fate of chance that things wouldn't be but you know, on balance, it would be okay. We sat outside the MRI room, we're fine. And we knew there was a medical emergency going on somewhere. And we had no idea it was our child. And the medical emergency was one of rather than critical, you know, we didn't have a baby at that point in time who needed lots of medical input necessarily. But during the scan the rady ographers had obviously seen a very large mass and rushing was for the paediatrician and the other professionals to go in and see on the screen this large mass, but we have no idea that we're going into someone's room. So you know, we just thought, oh, goodness, something's going on for somebody Poor things. But our baby was well, and we took our well baby in for that scan. So we didn't expect to receive news of such kind of acute nature that this is something that needs dealing with right now.
Sarah:And what was that moment like when you did get that news?
Kerry:If I'm honest, there was a big element of relief. And I know that's not maybe something that I have always felt comfortable acknowledging. But I remember in that room at that time, that was my first emotion that I felt validated that there was something there was something wrong with Rowan's brain neurologically, which I had suspected with my training from, you know, my professional role as a health visitor. I wasn't going crazy. And you know, I had had some invalidating responses, not by all medical professionals, but by some. And as a mom, who was sleep deprived with a very distressed baby, that's really difficult to manage, because you start to doubt you what you know, and I think all mums feel about that, but especially because of my professional knowledge. I knew there were so key indicators that were more than a coincidence that they all existed. So I felt validated, I felt a degree of relief that I had a clear explanation. And the words brain cancer were used at time of diagnosis, which, you know, that once that kind of really sunk in beyond Oh, well, now we know there is something neurologically wrong. It was then oh, goodness me, what does this mean prognosis wise and long term because the syndrome or or cerebral palsy is very different to the cancer word, really, in terms of what the emotions that that brought up for me personally.
Sarah:How did that affect when they said brain cancer, because like you said, you just thought it was a cyst on his ear initially that it was causing Well,
Kerry:that's not the kind of sort of thought I didn't believe that because of the number of different symptoms that couldn't also be explained by the system here. And I understood it to be neurological. So as a nurse, being in a room many years ago, as a student nurse, regardless of the speciality, you see people having bad news broken to them. Before that news was broken. We were in a room on the children's ward with a cotton it for when to recover from it anaesthetic and I think I was holding him though at the time, and the doctors and the nurses started carrying chairs into the room. And that's not normal. When somebody comes to say you've got a cyst in your ear, that's great news when they start carrying their own chairs. And so I knew I knew whatever they were going to say it was catastrophic. Whether it was catastrophic brain injury, which is what I suspected with or you know, catastrophic syndrome, but I just knew, so I think catastrophe was probably, and when they said can't bring cancer, that reinforced about okay, this is really serious. I need to make plans for Jack, we're going nowhere tonight, that our eldest son, and we need to kind of put things in motion very quickly, from a support network point of view with family to make sure our you know, it was only free at the time was supported, whilst we focused on what we needed to do there. And then, when did
Sarah:you tell him was happening? What what did you say to me?
Kerry:Nothing at the time, because we couldn't speak to him. So we probably we told him the following day when he was able to come to the other hospitals. So we were taken by ambulance from one Regional Hospital, which although has very good repair, very good reputation wasn't a regional speciality for children with cancer. So we were transferred, which was a 60 mile journey in an ambulance to another hospital. When Jack came into visit, we were able to talk to him. We weren't given any guidance, or support. It was an incredibly busy neurological ward. And I just talked to him in a way that I thought he would understand. I talked to him, you know about Bob the Builder and things and about rolly being the really important vehicle in Bob the Builder for smoothing out lumps in the road, and that lumps in the road can cause problems. And when extended that into rooms got a lump in his brain and it's causing a problem.
Sarah:That's a tough thing to have to explain to a three year old.
Kerry:Yeah, I mean, we couldn't you know, we did though it was going to have an operation because we knew at that time, that's what the plan would be. And we put in place it as you said, a three year old cannot make sense of things. And he was you know, he was only recently three he wasn't nearly four year old. Again As you know, my background kicked in, and I was like, well, we've got to now for Jack, the most important thing is that we memory build this in whatever time we've got before the operation where memory built. So we got the video, we made sure somebody brought up video camera, and it was before we had smartphones, you know, so that we could create memories for Jack with his brother in the hospital ward, because we didn't know if they'd be memories for him and his brother after that.
Sarah:Do you think at that point that you thought that by when we die, then at that point,
Kerry:we were told what the risks of surgery would be, we were told a one in 100 chance of death as a result of surgery, and a one in 20 chance of very significant life changing health issues and disability, for example, we're talking about ventilation, we're talking about long term feeding issues requiring mechanical feeding. That's the level of disability they were talking about at that time. So you know, wanting 100, or wanting 20, we didn't want to not create those memories. We knew that after surgery, if we had fallen into one of those two and lucky brackets, then it would be much more harder to focus on. Jack's needs around sort of grief. So anyway, we started to prepare for that we didn't talk to Jack about dying. What we talked to Jack about was, this was a big operation to help go in, and hopefully it would help him but we like to say we were memory banks, and try to make it as positive as possible so that he would have positive memories of being in hospital with his brother, regardless of what the possible outcome could be.
Sarah:That's really incredible to have that thought process, when you must have been in turmoil yourself, you must have been absolutely in pieces yourself, your new parents, you've got this beautiful little baby, this is the worst nightmare, this can't be happening.
Kerry:I never thought it couldn't happen. Because I don't have that sense of I don't know what the word is to describe it. I've worked with enough families who have disabled children to never look at the draw. And having healthy look at the draw to you can have a very, very healthy child who sadly dies as a result of sudden infant death syndrome. Or you can have a healthy toddler who unfortunately contracts meningitis and doesn't pull through. I've never taken health for granted or having a child with a disability for granted. And I don't know, I think that it's just the reality of my my job, you know, and I think that's something that maybe helped to give me a bit of flexibility. In my own mind. I didn't screen for everything that we could have screened for antenatally with row one I did with Jack, but not with roe. And and so I think there was always a door open in my head. But we didn't know what we'd be getting. And of course, nobody, no parent knows what we're getting the antenatal screen only tells you a percentage risk for a very tiny number of health conditions. It doesn't give you a full picture. And I think it can lead people into a false sense of security, not having that did really actively and mindfully keep me more aware that there was a possibility. But you know, we may have had a baby with Down syndrome, and that we would cross the bridges when we came to it.
Sarah:And how is the parent? Do you cope with that when you're his mom? Is there a sense of what did I do? Could I have done things differently?
Kerry:No, not in the immediate time. And I think immediate time it was very much firefighting. But introspect, introspection just wasn't there. I think when there's a critical emergency, one of the brilliant human brains instincts is to almost put the blinkers on and be very focused with what's immediately in front of us. And that's exactly what I felt had happened that were possible. I was just being proactive and making plans trying to manage Jack's care at home from a distance with grandparents, managing grandparents emotions as well, trying to think about sort of what we needed for the operation day. We knew it was going to be a 12 hour operation. They explained that to us. They also tried very hard the consultant to reframe the initial brain cancer diagnosis to something that was more palatable, but also probably more realistic, which was this was likely to be they describe our time as a benign tumour. We don't use that language anymore. We use low grade tumour in our network. And the reason for that is because of the brain injury impact that that tumour has had was, it's far from benign. It's, you know, it will have lifelong implications for revenue and it does. So the revision to a new grade tumour there wasn't time for a biopsy was really difficult to get our heads around because by definition, that's a slow growing tumour. Here we have it fast approaching 10 week old baby who is showing signs that this tumour is growing. And that's why the new sort of each developmental milestone, very tiny babies go through, there was more kind of evidence of symptoms. So that's quite hard to kind of get our heads around believe the low grade aspect because it clearly was growing. And that's why we wanted us to have surgery as soon as possible, despite it being suspected to be low grade. So yeah, very confusing time with the terminology. I think if we had our time again, one of the things that I would have really love to have happened is that the initial consultants at the big regional hospital that was non specialist if they hadn't used the word cancer, I think it would have made it a bit easier and a bit less confusing. Once we got to the specialist hospital, which was very clear that they didn't think it was cancer, they didn't think it was aggressive.
Sarah:And yet the treatment was quite aggressive in a sense, wasn't it because brain surgery on a 10 week old baby is an aggressive kind of treatment.
Kerry:It's massively invasive to try and do a partial resection which was all about they could they estimated they would do a partial resection because of the position of the team and I knew that we would never be able to get it all out. The tumour was in two places, they were going to target the area that was causing most problems. The other part of the tumour had been severed from the main parts. It was one tumour originally, but as these school plates fuse together during neonatal development, it severed the tumour into two places, so one inside the skull and one outside the skull. So the one outside the skull could stay where it was, it wasn't doing any harm, the one inside the skull needed to be reduced as much as was safe to do so. And that's what happened. But you know, again, I remember there was more for the long nights in the runner up, we had about three, three nights, I think before surgery, you know, and it was obviously incredibly difficult. The ward was so very busy, but it wasn't the time really for staff to offer any sort of emotional support at all. And I'm sure that frustrating for staff no end, they were also providing respite for children, unaccompanied, who had very severe neurological long term disorders. So they were having to give a lot of care to those children because their parents were desperate for respite and we're off for Ward having that respite. So I can totally empathise with the staff, but psychologically, it didn't support parents in that situation. Because, you know, we were left with our own faults. And like I say, for me, personally, I tried to turn them to being as active proactive as possible. And I just found goodness, I didn't have a smartphone, and I wasn't able to access Google, because I think that would have been really difficult if I had. Yeah,
Sarah:absolutely. And like you said, you already exhausted extraordinary man, that's, that's had an ill baby since he's been born. And now you're spending three nights in hospital, turning yourself inside out, we, you know, knowing your son's gonna have a 12 hour brain surgery and having those odds given to you, that must have been incredibly difficult.
Kerry:Yes, it was. And I think not having distraction, which you do have at home, when we have hard times at home, we can go to our bookcase and drag a book off, you know, the shelf. And even if we can't take the words in, we can physically look at a book and beans. I remember on that first night in hospital, we were so far from home, nobody could have popped down with just a bar. That was impossible. You know, and once you read a couple of the magazines available on the ward, there wasn't anything else. You know, and that was that was really tough going. Yeah, really tough going to just not have that ability to just distract not even pen and paper. And I think one of the things that I would really welcome off when it was when I was able to put a list together really for family to bring in things like a book like pens and paper, anything really to try and kind of keep the mind occupied and other things at a time when you know, sleep would normally come because you know Rome was asleep at those times. But that wasn't an opportunity. And obviously on the last night before his operation, I didn't want to sleep but I actually took him out of the cot and I slept with them knowing that the nurses were coming in very often to do his observations and that I probably wouldn't sleep. So we just had quibble time or night, which was really lovely.
Sarah:So he goes off and he has surgery, trying to tell us a little bit about what that was like and the recovery from that.
Kerry:Yeah, surgical surgery day was kind of unbelievable. I didn't realise just how capable the human brain is mind not Rowan's, in this instance, of being able to self Preserve. And if anyone had told me in advance that I would spend surgery day in a state of calm I would not believe them. And it wasn't an active choice that I made to be calm. It was, again, going back into that firefighting, automatic pilot mode of self preservation, my brain just, it's a bit like having a baby in a way you got to trust in your body. But it will just do what it needs to do. Whether you consciously decide to push a baby out or not, it's going to come, you know, more often than not. And in a way, surgery day was very similar. So we had put things in place with a group, we had decided together, who we wanted to see and who we didn't. And we decided to make sure we had a company of two friends who had been at the same hospital with their daughter when she was a newborn, and had experienced some of the emotions that we were going to think about we were experiencing and going to be experiencing on that critical day. And we asked them to come in and tell us about their holiday. And nothing else, just talk about your holiday, and just distract us with silly talk. And we went to a museum across the road from the hospital, and had coffee, and that's what we did. And it was pleasant, absolutely pleasant. But we shrouded ourselves and being insular from other people's emotions, because other people's emotions within family and friendship network, of course, gonna run higher because they're rooting for our baby. And that's wonderful. But in that fell preservation mode, what we needed was to have nobody else's emotions, either projected onto us, always feeling like we need to protect other people's emotions by not being authentic. I think Matt decision was really critical. You know, we went into WH Smith, I needed a new SIM card for my phone, although I didn't dare replace it that day in case the hospital needed to get ahold of us. We didn't stay on the ward. Sort of fearing the worst, we literally it was probably the most mindful day I've ever had in my life. And that was, like, say not free choice. Just nature at play, which left us with, you know, sort of one foot in front of the other minute by minute and kept her safe, really, from what otherwise would have been an immensely overpowering overwhelming experience.
Sara:Yeah, I'm just thinking my husband Neil had a six hour operation it is we were there at Charing Cross Hospital. And it's, it's the longest day ever, of course, and you don't know what's going to be at the end of it. And I remember sitting in a pub, but I kind of wasn't sitting in a pub you kind of you always feel like you're suspended in time actually as the way I describe it, you were sat having a drink but we're not we're just kind of just set a kind of all set in limbo just waiting really for for the next for whatever is gonna happen and and luckily for you and Rowan and and for me with Neil, it actually, we were lucky in the fact that things did go okay, which is all you can do is just hedge your bets on that and hope for the best and just sit it out, isn't it?
Kerry:Absolutely And I think you know, it clinically, I would describe but state has been dissociation. You know, it was like walking on cloud all day, and walking through cloud. And it felt so cushioning and protective. And I think when we think of dissociation, we often think of it as being a really negative thing because it stops people from kind of focusing and concentrating and being very present in the moment. But brains are amazing. And I think we're all you know, whoever's kind of listening to the podcast will have had experience of brains not only been very poorly and very, at times very damaged by illness and injury, but also having the most amazing powers at times to surprise us. And I certainly wouldn't describe it as a spiritual process. I would describe it over to you No, absolutely kind of neurological process in a healthy otherwise healthy brain being able to carry us through that dreadful dreadful day, which I think in a way made me realise how complex brains are and if minds that complex and my babies is, and I suspect that kind of made me hopeful, but he would be okay.
Sara:So coming, you know, when when he came out of the operation, what happened? What happened next to what?
Kerry:When he couldn't? Yeah, if we were allowed to go up to intensive care. So although he was away from us for 12 hours, the anticipation for the operation had been so great and so distressing, that actually knowing that he was out and he was I think he was grieving. And they did, I think, interesting how brains play tricks on us and get rid of the worst of the memories. But he was in intensive care. And he was holding his own fairly well and, you know, as good as as good an outcome as it could be really. It was a fairly long 24-36 hours of intensive care. The following day, I would say was probably the heart oddest partly because, you know, it was hard to stay in that sort of like, strange, strange state that we'd been in on the day of the operation. I think probably things hit home more, I was still breastfeeding. So obviously he couldn't be breastfed during most of his day in hospital. He was on nasal gastric feed, but I was expressing. And the room I was given to express in was named after a child who died. And that was really hard, really hard. And we found that a lot really bad. There was memorialization of things that were really either things that provided quality, or an enhanced experience. So like this family room that was named after a child who passed, some of the charities were named after people who'd passed and that was probably really difficult for me, at that time in my vulnerability. And I certainly think it probably contributed to a sense of almost survivor syndrome really. And that sort of guilt, survivor guilt, that was really hard to come to terms with what was it that was about my baby. And me, that means that we were lucky using Service words, and that other people weren't lucky. And that's not fair. That became really, that for PAM became really unhelpful, but I felt that I needed to be lucky that I needed to really recognise how lucky we were and it inhibited that processing of, of grief really, and that need to lick wounds, because I haven't done I didn't do for about, well, nearly six months, I don't think has stopped to lick my wounds. And I think that's really critical. I just carried on literally sounds like Kylie Minogue with, you know, saying I'm looking at was over and over again. That wasn't a useful mindset to be in. I think it was quite probable. But it was a mindset I felt I needed to be in because Rowan's rehabilitation needs his brother's emotional well being needs, you know, the family's needs were so critical in that immediate recovery period. But it wasn't useful to me and my needs. And I think that was about hampered really bad thoughts of grief, and being able to focus on what it meant to me to go from having had an ill baby, but I didn't have a critically ill baby before surgery. And like I say, we have those two stable weeks where we have the smiles, we had that, okay, this might not be so bad, you know. And then to go into a world of uncertainty, there is no trajectory or pathway or certainly wasn't 10 years ago, for babies who've had brain surgery, there was no conversation ever around brain injury. But logically, I knew that that was a real, that was a realistic possibility. And therefore, I felt the need to really throw myself into the rehab process, which was hard work really hard work with no real understanding, and his team around him didn't have a real understanding about what the challenges may be. I literally expected to be discharged after a year from the Child Development Centre, to be told, when all's good even though I knew deep down that or was not going to be good that it would be very unusual for baby where have you said that aggressive invasive surgery to get off scot free.
Sarah:He had the surgery, then he's obviously in recovery from surgery. It's scary. I think most new moms will especially first time moms will say how scary it is when they've just given birth, and they have to take a new baby home. But that moment when you're you've got an hour child that's had brain surgery, and you get to take him home. That must be a double edged sword of being relieved to get out of hospital. But then also, you've now got this child who's got all these additional needs?
Kerry:And I think it was yes, and no. So I think the additional needs weren't apparent because of his stage of development. Because he was such a small baby. It was really hard to see the additional needs, and we didn't see them initially, in any sort of profound way. Because he already had those indicators before the surgery and those indicators were left after the surgery. So we didn't see immediately a deterioration in where his starting point was his baseline. Well, I do remember the last neurologist ward round before taking Rowan home and asking the question about what is the risk of sudden infant death syndrome for a child following neurological injury? It was really astounding to me as a health visitor that that answer that question couldn't be answered. And it was so I think they hedge their bets a bit and after a bit of sort of ignoring it was like, maybe slightly more, but it didn't and I think that probably started a thought process for me. which was nobody really understands the outcomes for these babies, they're not tracked in a, in a sense not individually, these children are tracked because they have people who are observing like the paediatricians and the therapists who are observing their progress. But collectively, we haven't. We've got no evidence base, we've got no research that kind of talks about what a baby's needs are. And I think there are charities out there who specialise in children who are born brain injured, usually for a cerebral palsy, or with significant syndromes around brain development. And I suspect had we been signposted to those early on, we may have found some more reassuring information, or at least more evidence around what is normal and what may be to be suspected, so that we could then mitigate against risk. And I felt that that was something that was lacking. So he fell into a brain tumour grouping, but not a brain injury grouping, for some reason, at that point in time. And I think that didn't do him or as any favours really, because we will have this disempowered and not able to learn from other people's experiences of neurologically challenged children and babies.
Sarah:I think that's a really good point, isn't it because a brain tumour is very different to any other kind of tumour in the fact that, like you said, brain injury is almost inevitable to have to varying degrees is going to happen. And that's something that's not talked about enough and that signposting to brain injury support services, to understand what those challenges are going to be, should be something that happens more.
Kerry:They and I think both a fallacy around neuroplasticity. And I think there is a great deal of professional optimism based on that neuroplasticity. So the baby's brain will just find new ways to bypass the areas that are problematic. And but you know, great if it happens, but actually, it's a bit like, you know, messages going down or if the messages or vehicles and the pathways are main roads, or busy super highways, you've got messages darting through our brains from one part to the other. And if there's a hiatus with that, and there's a blockage due to a tumour of the damage around the third root for the tumour, then the brain has to work extremely hard to reroute, to be able to get rid of messages through and that is exhausting for babies or children or adults who were affected. And I think, you know, the neuroplasticity argument probably clouded really any sort of idea of a pathway or a trajectory for everyone. And it was all celebrated. But he was so very young when he was diagnosed with a brain tumour because the brain will recover. And I think that was really frustrating. And I think I ended up back in that invalidation and sort of feeling, am I making mountains out of mole hurt mole hills, because clearly he's struggling with this aspect to development, and although we have mitigated against that, so it's only very subtle. The point being is it's still bad, and who else can see that and, you know, little things like we weren't referred to Portage, which used to be a national charity, and they've now more mainstream and integrated within local offers for disabled children. And it's designed for babies and toddlers, to promote their kind of overcoming whatever deficit or dysfunction or whatever the injury is usually a neurological injury, to put as much support in as early as possible to promote longer term better outcomes. And we weren't even offered that because it wasn't, there wasn't a recognised trajectory. Whereas if Rowan had been diagnosed with something different, but neurological, as a newborn, he would have likely ended up on that pathway, and that is difficult.
Sarah:We're going to take a break here in part two of this interview with Kerry, we're going to be discussing what life's like once treatment is over, including the impact of brain injury and long term care. So we'd like to thank Carrie at this point, and we'll see you in part two. We hope you enjoyed today's episode. Don't forget to subscribe to the podcast so you'll never miss an episode. If you'd like more information, you can visit our website at brain tumour charity.org or email our support team at support at the brain tumour charity.org. And finally, before you go, if you enjoyed this podcast, please can you leave us a review on iTunes wherever you get your podcasts so we can reach more people and raise more awareness