This is the first time I have written in over a year and a half. Ian was diagnosed with a brain tumour after a big seizure in February 2019 and I took a step back from writing about me, because it just didn’t seem right when it was him that was ill and going through so much. This is completely incorrect of course, because it wasn’t just Ian going through his illness, it was the boys and it was me too.  It was his mum and sister and their family who were constantly on stand by to drive over and help. It was my family coming over from Denmark to help and support me when they could. It was our close friends coming to sit with the boys when I couldn’t be there, and our wonderful friends in the village who brought food to us all the time.

But maybe I also couldn’t write because it was just too much. With Ian’s diagnosis came instant knowledge that he would die and fairly soon. All we could do was try our best to make more memories, make his life a little easier and ensure the boys got through ok. Our first goal was getting Seb through his GCSE’s - we (read he) did that really well. Then we moved the goal post to surviving to Christmas and just having a great summer with Seb, Lucas and Milo. The great summer we had; surviving until Christmas, yes, but really only surviving. Christmas Day was spent at the hospice with Ian in his bed next to a “festive” laid table and an attempt to bring some holiday cheer through his beloved music. Ian loved music with a passion like no one else I have ever known. He made a playlist which he was adamant should play whilst he was dying and we managed that as well (in fact we listened to it non-stop for the best part of 6 weeks). The whole 11 months from diagnosis to death we survived and managed bit by bit and with and through the boys we even managed to live a little.

There is so much I could say about the devastation of brain tumours - not only physically, but mentally. But that would be opening a box of hurt I may not be ready to. You see, I am only just again surviving. It sounds so dramatic and those who knows me well knows that drama is really not my style. I am more of a “get a grip and get on with it kind of woman”, at least I like to think so. But as I was sat in hospital looking at my 4 year old in his bed with the machines attached to him with platelets, then antibiotics, then fluids, then anti sickness drugs as his blood counts had all but hit zero (very dangerous, especially if you have an infection) you’d probably excuse my huge sense of devastation.

Because Milo has a brain tumour too; not the same as Oscar and not the same as Ian. So not only do I get to see my youngest son also go through treatment, I get to spend countless nights googling a new type of brain tumour, new treatments, support groups and so on. You couldn’t make it up could you? This time I have even more experience and that has come in handy. I kind of know where to concentrate my efforts and I know what to do when in hospital. I know when to push and when to back off. I know what I would have wished for with Oscar and what I would have changed, and I use those lessons learned. But really it’s all heart breaking.

Ian died in January. As a family we picked ourselves up and I sorted the practical stuff fairly quickly with the help of a huge support network. We had the funeral and in February we travelled home to Denmark for a much needed break and even went to Tivoli just the four of us and had great real fun. Seven days later I did a speech about how far we have come as a charity at our amazing ball and three days after that I walked into A&E with Milo after dropping Lucas off at school and told the receptionist that I needed to see a doctor as my son has a brain tumour. I wasn’t very dramatic then, rather weirdly calm and matter of fact. It’s the first time I have experienced or heard of such a quick diagnosis – the same evening I knew what the brain tumour was likely to be due to location and spread and the “look of it” on a scan. Before I fell asleep in my bed at the hospital in Leeds where we’d been rushed to, I was part of a specific Facebook group for this type of brain tumour and knew exactly what treatment the doctors would be recommending.

But I still got a shock; Milo had more than one tumour and some spread and whereas I expected the doctors to “whip it out”(brain surgery is pretty much like your average appendix removal in this house these days) they told me that they would only do this if we could get rid of the smaller ones with chemo as otherwise there was really no point…….I’ll let that sit with you for a little while.

We are now five months and eight rounds of chemo down the line and looking at Milo you’d think he was sailing through this (apart from maybe the past two days which has seen him be sick every couple of hours day and night) and surely he is fine, right? No one can look that healthy and be that energetic and yet be so ill. It’s the beauty and the horror that goes hand in hand. My boy looks, apart from loss of hair, like a healthy active boy, but the horror of it is that he has multiple brain tumours and when they were big they caused such pressure in his head that he has some extensive permanent loss of vision, full loss of hearing in one ear, the steroid treatment made his body balloon to what looked like double his size and the chemo has now ensured all that weight has been lost. Nothing makes you lose your appetite more than chucking your food up two minutes after enjoying it. So much food will now never be eaten again in this house. (this does not apply to me, I eat my way through this like I have for the past 7 years now).

I wonder if I will ever become immune to the pain around me, but of course you don’t. It is still heart breaking, no matter how brave Milo is, to see him throw up, to have to hold him down as they put the dreaded wiggly line in (something he let them do the first five or six times until he heard other kids scream out in fear of the impressively big needle at clinic and decided this was scary stuff), or when he sits and makes little tasting sounds as they push the medicine through his central line figuring out if he needs water or if this one is just a flush, when he desperately asks if they can give him magic sleep medicine so he doesn’t have to feel anything or the worst; when the other night he turned to me and said “I don’t want to die mum”. I can promise nothing and help little because although he impressively says “it’s my body and you can’t do anything to it I don’t want” we both knows that really what needs to be done will be done.

And then we have the beautiful moments when every night we tell each other how much we love each other and I mean who can argue that being loved all the way to Scotland and back can be beaten by anything?  Or when he holds my head in his little hands and tells me I am the softest mum in the world and he wants to kiss me forever. I tell him he is the bravest boy I know but that doesn’t cut it because really he is the bravest person I know. His brother was the same and it amazes me that Ian and I have been lucky enough to have four such strong boys in our lives. Seb and Lucas have their own battles and these are constantly pushed aside.  I live with constant guilt that I don’t have another 10-12 hours in every day so I could do some normal things with them all. Things other people take for granted like taking your kid out to get school shoes when they start secondary school for the first time, or be the one that teaches your child how to drive, or maybe even just take them to their football and actually stay and watch. None of these are easily achieved by me and people can say “It’s fine you can do that later” or “they understand this is the way it is now”….it’s been like this for Lucas pretty much since he was one and certainly for Seb the past seven years. So that guilt isn’t something I will get rid of soon and it’s something I ponder will have an effect on them as they become adults.

Losing your brother and then your father through horrible illness where you watch them suffer, and then watch your youngest brother again go through similar can’t really be conducive to an easy life. My biggest fear is that they lose the joy in life. If they start fearing for their own lives (which kind of would be understandable) they will lose joy, and if they start feeling guilty they will lose joy. So I guess my advice to them is do as I say not as I do.


Walks to the park

Often when I walk towards the park from our home I am reminded of Oscar’s last trip to the park. He was in a wheelchair and he had relapsed whilst still on treatment. This was unexpected and we were supposed to be back home in Denmark on holiday with my family. Oscar was a proud boy and he didn’t like anyone seeing him bald from the chemo and radiotherapy and he certainly didn’t like anyone seeing him unable to walk. But he asked to go to the park as he loved the fresh air and was happy that day with going in a wheelchair – simply accepting that there was no other way. He stopped me, though, from pushing him around during a game of croquet and stubbornly walked around, the pain and tiredness overcoming him. And in true Oscar style, he was unstoppable still. It is to this day that his stubbornness, which so many times frustrated me, is what I remember with such admiration and fondness. He would have moved mountains had he still been here.
On these walks to the park I pass a tree where that day Oscar suddenly asked me to stop and said “I am sorry Mor”. I didn’t know what he was apologising for but he explained that it was his fault we weren’t going to Denmark and he felt bad about it. This floored me and I can still remember wanting to burst into tears but keeping it together and explaining to him that it certainly wasn’t his fault – it was the stupid cancer which he could do nothing about. I also told him that Denmark would be there forever and we would go on the boat again that summer so he could be with family and swim at his beloved beach by my parents – one of the worst lies I have ever had to tell, only topped by letting him choose and buy new Wayne Rooney football boots two weeks before he died. We made sure he had the boots with him along with his Man Utd kit when we said our final goodbye.
Oscar was the kind of boy that would make you feel as Lola Baidel, a Norwegian poet, so aptly puts it in a poem;

I want to
rip my heart out
Put it in your hands
And say

Can you hold this
for a moment

Oscar has forever got a piece of my heart with him and I don’t want it back until we meet again


I often think of the movie Sliding Doors. Only for me it isn’t a moment here or there that can change the path of my life, it is an actual feeling of living two different lives simultaneously. There is the real life with very real actions and conversations and then there is the life in my head which runs alongside; the one where I am constantly aware of what Oscar would be doing at this point or I dream of what he would be doing, saying, feeling - this includes great moments and more challenging moments. It feels good and important to keep Oscar alive in a real way because he was so much more than just a boy with cancer. He was a sports hero to his friends (I can say this because they told me so), he was tenacious and a perfectionist who wanted to do well in everything he did, and he was also challenging in temper - mainly for me and never with his peers. Oscar would find a convincing and charming way to argue that black is white and be very strong in his view points. All attributes that makes for a complex, loving and loved boy. Oscar had soul and he was always going to make his mark on the world.
So in my Sliding Doors the doors just keep sliding and once in a while catching me and I wonder if this will be forever - well, my forever. Will I go to bed every night wondering if the next morning I have to wake up and tell myself to get it together or tell myself how lucky I am to have had him in my life. Or will I wake up and jump out of bed and get on with the morning as any normal family do - I never know which.
I want to talk a little about Oscar’s brothers. Seb and Lucas were everything to Oscar and he was to them. We are lucky that they are still comfortable talking about Oscar and this shouldn’t be taken for granted. If we as adults don’t understand death, how are they as children supposed to understand it. And in our family, it’s not just death we have to deal with but the fact that Oscar suffered before he died. Part of how we deal with it is by turning our emotions into actions and trying to help so other children may one day suffer less when met with the same diagnosis as Oscar. Oscar’s brothers are a huge part of this and Seb has even stood up and done talks to his school friends and teachers – all 1400 of them - and Lucas will come out and talk to the public when we have a stand at events and he is very matter of fact when he tells people that we raise money for his dead brother so others don’t die.
I look at my boys and the fear for me will always be that one of them could get cancer too. Roughly one child in 285 develop cancer before the age of 20. I don’t see those odds as rare and, as proven by my family, someone has to be the one. I don’t know if they have the same fear or if they fear losing me and their dad, especially after Ian was ill last year, but it’s probably a pretty good guess to say they do. I guess the best thing we can do is equip them with the tools to be able to handle whatever comes their way and show them that they have support around them. And I think we do that by also showing our support and how much we want to do for others.
Milo has started mentioning Oscar now as well. It’s difficult to know what a 3 year old thinks, and we don’t talk about Oscar to him all the time, but he has obviously got a good sense that he has a brother he never got to meet. There is at least one picture of Oscar in every room of the house and Milo knows that this is his brother, that he was great fun and loved playing with his brothers, that he was happy and loved being active and that he would have loved Milo as much as he did Seb and Lucas, had he been lucky enough to meet him in this life. The other day Milo said “Oscar and I match, don’t we?” – he was talking about the colour of his and Oscar’s scooters - but it did make me think that yes they do match. All my boys match. One way or another they are connected and matching each other – four brothers, four souls, four individuals, individual yet intertwined forever.

Oscar 18 Feb 2013


We’ve had so many proud moments since we set up OSCAR’s Paediatric Brain Tumour Charity, but today is a very special one as we are able to share news of the impact of everyone’s hard work and efforts to make a difference to the fight against paediatric brain tumours.

Alongside the Brain Tumour Charity, we have funded a trial that provides the ability to give children treatment that is tailored specifically to their tumour. This is a huge step forward in the management of brain tumours as it means that children with certain types of medulloblastoma can receive less toxic chemotherapy and a lower dose of radiotherapy without reducing their chance of survival. The results of this trial could spare many young patients from some of the lifelong health problems caused by high doses of chemotherapy, and it’s making an impact already.

When Oscar died, we made the decision to set up a charity in his name in the hope that we could have an influence on other children not going through what he did. It wasn’t a decision we took lightly and we gave it a lot of consideration. We had raised a huge sum of money from our friends, family and extended network when we thought we would be able to send Oscar to America for life saving treatment, and we wanted this money to be used to change how children with brain tumours are treated in the future - and ultimately save lives . I’ve met many other parents who have also lost a child to a brain tumour and it seems that many of them consider going down this route too. The Brain Tumour Charity offers lots of different ways that families can remember their loved ones. We considered going down the route of setting up supporter group with The Brain Tumour Charity in Oscar’s name - they have over 250 of these groups, which all raise funds and awareness to change the outcomes for those affected by brain tumours both now and in the future.

But in the end we decided to set up our own charity for Oscar because we wanted to focus on paediatric tumours. It’s hard work at times, often very emotional, but always very rewarding. We’ve been going for almost four years and have raised over £300k. We’ve grown from doing a couple of small local events in York to running larger scale events ourselves, and now people we’ve never met have been touched by Oscar’s story and raise money in his name. We have people who run marathons, climb mountains, swim across lakes and cycle across countries. There’s children who push themselves further than they (and their parents) ever thought possible, and parents who take time out of their busy lives to help their children take part in activities to raise money that will fund critical research into brain tumours. And it’s so wonderful to be able to say that we are really making a difference and changing lives.

Thank you to everyone who has ever supported us. Oscar would be so proud to see what we’ve all done together.


We are proud to be mentioned in the article below


oscar hospital


I cried the other day for a solid 20 minutes. That hasn’t happened in a long time. And it was with full on sound and facial dramatics. And it was in my car at broad daylight. There is a good reason for this; I had to go to a meeting at the hospice we took Oscar to after he died. We were “lucky” that we were able to give Oscar a peaceful death at home. But afterwards we couldn’t face having him at home until the funeral. This for a multitude of reasons, one of them being that we would have to install coolers in his room (yep, death is not as romantic as you see on film), another being that the kids and us simply needed a “time-out” from the world. So, Ian and I decided we would drive him to the hospice ourselves. Ian drove, and I lay in the back of the car with our dead son holding him and making sure he was safe through the journey. We didn’t really say much on this journey, all I remember is holding Oscar and looking out the window as everything outside passed us by, feeling thankful that no one could see in and wondering what they would think they were seeing if they could. I imagine you would see a mum holding a sick child with dad driving as we had done so many other times to and from hospital – because it really is unimaginable that there we were with the unresponsive body of our 9-year-old child.

I wonder what people today saw when they saw me; a woman crying her eyes out over a heartbreak perhaps? Well, that would be true. But not your usual romantic heartbreak story because that never has and never will apply to me. Not once have I cried over a man – felt anger sometimes, betrayal, sadness but my heart breaking? No. I know that now.

The first time my heart broke was when Oscar was going through his tumour resection. I lay in a hospital bed next to Ian as the Operation took 11hrs and for the first time in my life I admitted that my heart had broken, not only had my heart broken, my whole soul and being broke with it. And after that day it just kept breaking a little bit more. It broke a little every time I saw Oscar in pain, with every new horrible experience he had to deal with, every bit of joy he missed out on and with every physical or emotional pain he had to go through; I just kept breaking. It is a pain that I cannot run from or fix and so I must walk with it. And I do. I keep myself busy working, sorting the house, the kids and seeing friends. But put me in that same car on the last journey I took my son on and I admit complete defeat and I let the pain be unbearable…for a time.

I had 8 normal fantastic years with Oscar full of joy. These years, along with the years with his brothers, were the years my heart flourished untainted by pain, my soul came to rest in the values of family and pain was something connected mostly to a physical aspect. That my child at 8-9 years old should feel a year of such pain, losing the innocence that is such a beautiful privilege of being a kid and never had the chance to recover from it all and find that the world could be ok again with our love - that is a heartbreak you never recover from.


Oscar’s funeral was exactly 4 years ago on Sunday 13th May – it is also the day we attempt to take 65 children and their families up Mount Snowdon for the charity. I will never understand that Oscar is dead. And I will be forever grateful for the people we have around us supporting us. It is humbling that so many people, and poignantly so many kids, want to be there for us, for Oscar and for other children with brain tumours. In a world where sometimes we lose hope, this weekend restores all my faith in human compassion and empathy and in the saying “The smallest gestures can produce results that will change the world”.

Four years and it still feels like only this morning I was cuddling my boy. I can still physically feel what it feels like to hold him – I know the shape of his strong leg muscles, what his skin feels like on his arms, the touch on my cheek when he would give me one of his rare “butterfly kisses” and it’s a blessing that I can still feel all this. And it is probably incomprehensible for others, but it is true and real for me. And it is all I have left along with memories.

It’s sometimes a strange way that we try to understand life and death; we give the things that happen to us meaning or at least we try to. We come up short, though, when really bad things happen. There is no justification for your child getting a brain tumour and dying. We didn’t need to learn to appreciate our children and our family – they always came first for us, so why? Oscar was such a lovely, kind, funny and strong boy and he certainly did nothing to warrant having to go through so much pain, so why?

Maybe we just don’t have to understand and give it meaning and all we can do is accept. Life is really rather short for most of us and all we can do is try and make it good. I don’t think any of the things we have around us matter much. I know for some it does and I will never understand these people’s way of thinking, but peace be with them; if they are happy and not hurting anyone who am I to judge if the latest big car or tv makes a difference in their life. To me, though, the only real pain I am and will ever feel is missing the people I love and so, the only real joy I will ever feel is from the people I am lucky enough to surround myself with.

So yes, I cuddle my children even more, I memorise the looks on their faces in all sorts of situations and I teach them to be kind, loyal and loving so they, too, will know the joy of great relationships. It’s not just partners that makes us feel happy inside – it’s friends and family, too. I have lots of people around me that when I think of them I can feel that joy in my tummy and laugh out loud about some antics from ages ago still.

And I think of Oscar one day when we walked in to school during his period of treatment and he turned around to me by the car and smiled that biggest smile of his and his whole body did a little jump as he told me he couldn’t wait to go in and see his friends because they made him so happy inside and he asked me if that was odd. Odd Oscar? It is blooming fantastic that you were so lucky to have such great friends and cool enough to know it.

It is also only recently that Oscar’s friends mentioned that they felt we needed somewhere in our home village, preferably the school where he was so happy, whereby he would be forever remembered. Oscar was always someone who was going to inspire people. His tennis coach mentioned at his funeral that Oscar taught him more about life than he could ever teach him about tennis. And he was right; I have never even once known Oscar to give up on anything and whenever I feel myself falter or hesitate a little I think of him and I think; “Because of you I won’t give up!” – what a legacy to have.

We didn’t make it to the top of Mount Snowdon last year due to nature blowing us off the mountain, but in true Oscar style we won’t give up. So 4 years after all your friends and family said their last goodbye to you, we walk with you in our hearts, Oscar Hughes, our beautiful forever 9 year old boy.



My grandmother died this Christmas. She had a peaceful death and had just been, as she had always been, surrounded by love from family and friends. This was the “right way” of things – we are born, we live, love, perhaps create more family, live and love some more and then we die. We are missed by the people we leave behind but with a long life behind us this feels the natural order of things for all and the pain is a measure of love and although it overwhelms us and however difficult, it does not destroy us; We know somewhere along the way that this is the way it is supposed to be and that we can bear this pain.

The pain I feel daily is getting harder to bear for me. It is affecting my body and my mind. I have only just accepted this. I have been playing with the idea of having reflexology for months now but I know from before how powerful it can be for me to let go of my shield and so I kept putting it off.

Over the past year I have had to stay a little stronger than usual – Ian has been seriously ill to the point where I was probably going to lose him. And it wasn’t just me that was going to lose him, it was the children; they have already lost so much – their carefree childhood, their brother and undeniably a bit of themselves and parts of their mother and father. There is no pretending we are the same as we were before. Ian and I have both become a little more hot tempered – my theory is that it comes from trying so hard to be sane and keep control that when things go wrong the ripple effects feels like our world is falling apart again and thus we react to this, taking it out on the mundane everyday life. How ridiculous; getting cross over a bit of clothes not put away, a tit for tat over who cleans up more, who looks after the house, the kids etc etc. I mean, we should know better, right? But fact is the reaction to some of these ridiculously irrelevant things are bigger than need be because our energy levels are low – our balance is so easily tipped as we walk this thin line over a valley of emotions. We don’t argue really, we just point out frustrations and then move on, but we do it angrily. And it is confusing to others that we can get so angry and yet show no emotion afterwards, but it’s because it’s just an outlet for a few moments about something that we actually have no interest in, the outlet is the important therapy for us. As you can imagine we are great fun to be around!

Back to my reflexology; as expected after a year of fighting for Ian and watching Ian fighting for life and for the pleasure of staying with us, my body is shot. I hardly made it on the couch before tears started streaming out. My lovely reflexologist only had to say a few kind words to me and there I was – therapy and foot massage in one go! I don’t really cry with friends and I don’t talk about Oscar in any other way than in connection with the charity or through fond memories so this was a much needed release.

To be fair I have had to shield up over the past year to get through and I made a silent agreement with myself & Oscar when Ian went in for his major operation that it was ok if I concentrated a bit on Ian and the boys and maybe pushed Oscar to the back of my mind for a bit – this is probably also why I haven’t written a blog for a long time. Writing about how I still miss Oscar and the effect on my life when my life is also fully consumed with trying to be there for Ian and the boys through more devastation has just been impossible. I find that I am not superwoman……you may laugh at this but I kind of thought I was.

I thought I was rocking this doing the charity, looking after my husband and kids, honouring Oscar, working –I am really not rocking much these days. And I am constantly feeling guilty; I mean we all know that we have to look after ourselves to be able to look after others, but who in their right mind wouldn’t feel guilty doing that whilst watching someone they love struggle to just walk up the stairs? You kind of don’t go “But I need….”  And yet I have started that, so now I get to feel guilty for doing stuff for myself and frustrated when I can’t and it’s all me – Ian doesn’t even say a word. In fact he thinks I should go skiing, running and do stuff for myself.  And I will, it is part kind of a woman thing and part born out of my circumstances, so I just have to work through that – it’s just that circumstances do seem to keep hitting me.

Well, I am starting with taking Ian away to see the Northern Lights – something he & I have always dreamed of. And I get to have time alone with him, something I crave. The boys get to spend time with their grandparents which they love so we are all good on that one. After that, I plan to sign up to do Vasaloppet cross country skiing 90km in 2019 – so I have to look after my body and mind.

I imagine Oscar watching me and all I really want is for him and his brothers to be proud and at peace with who I am and to know that they always have been and always will be safe & loved with me and their dad – that I know, I can only deliver if I and both of us look after ourselves.


What I want today on Oscar's 13th birthday is to sit and cry all day. But I can't - I have 3 other children, of which the youngest looks at me with such innocent confusion at my tears as we sit and cuddle up, that I know I have to stop. 

It is true that cliché you read on "inspirational quotes"; Child loss is not an event, it is an indescribable journey of survival. And at the moment I am just about surviving. The memories which on other days bring me such joy is currently only reminding me of what is no longer possible, of all the dreams lost, of all the things Oscar should have experienced that he never will. Things we all take for granted; becoming a teen, secondary school, falling in love, the first dance, walking hand in hand with a loved one, the first drunken night, the first kiss, learning to drive...the list goes on.

I do love celebrating Oscar, and I have now forced myself to bake a cake with Milo and Lucas for him but this day is becoming harder, not easier. Ian and I didn't sleep all night, Seb woke up at 3.30am and couldn't sleep for hours. We miss Oscar every day but today we are reminded even more of the future that was taken from him. In the last year before he died Oscar swapped between wanting to be a footballer, a tennis player, a singer and a cyclist and there is not a doubt in my mind that he could have become whatever he set his mind to - all the memories in the world can't make up for us knowing he had that taken away from him


I find myself a little numb at the moment. This is strange and I know this. I think it is my survival mode – I put the emotions in compartments in my brain.

Today I am once again sat waiting at a hospital whilst someone I love is fighting for his life. The doctors very kindly for 2 days have kept asking myself and Ian if we are ok, have we got any questions, would we like a tour of ICU so we don’t get a surprise there; We are as ok as we can be, no more questions as our lists have already been ticked off and no we don’t really need a tour of the ICU as we know it very well….too well.

It is the first day since Oscar died where I must not allow myself to think too much about him. The compartments gets muddled up and I lose focus. Surely no one loses both their son and husband to cancer this cruelly? No child loses their dad and their brother like that? And so we are back to my biggest fear; my children, my boys having to live through more cruelty and me having to navigate them through it, but this time without my rock? Lets park this one in the top secret department and lock it up well!

So now I am currently going through the different scenarios that may happen today and in my mind picturing my responses to these – effectively picking out my emotions and reactions from the correct compartments ready to use. There are a few different outcomes available today. In a few hours I will know what kind of tears I will be crying.

So here we go again, I am giving up control to a brilliant medical team that will do everything they can for the love of my life, the most amazing dad to our children and I am hoping my tears will be of relief and joy.

It is what it is...


I can’t count how many times I have used the expression ‘it is what it is’.

It is my get out of explaining myself to others; my ‘I don’t want to talk’ expression. I used it when my eldest son had a serious operation after he was born, I used it again when my husband had cancer seven years ago, and I used it time and time again when Oscar got diagnosed, went through treatment, relapsed and died. And now I have to say it again; it is what it is.

My family’s world has been rocked again, and over the next months or year we will close in on ourselves and once more submerge into the land of hospital visits, cancer treatment, insecurity, fear, pain, strength, courage and survival.

You’d think we’ve had enough, but life doesn’t work like that; we see that all over the world when we look at child poverty, famine, war-torn countries with innocent people having their lives destroyed, families suffering through no fault of their own. So we have to have perspective – again – and at least we can look to the medical profession and trust what they can do.

We have to explain to our children that although Oscar died, it doesn’t mean everyone dies of cancer. The difficult part of course for me is that all my silent prayers and all the research and knocking on doctors doors didn’t save Oscar because he had a brain tumour a little too early for paediatric brain tumour research to have caught up with other cancer research.

I have to find some superhuman strength that right now I am not sure exists.  But of course it has to exist, because no one else is going to do this for me. And really, I have the easier of the jobs: I have to look after our family whilst my husband battles an invisible enemy he has not asked to fight but which has decided to fight him and he has to survive so he can stay with us.

I have of course told him that there is no way he is leaving, not now.  And he should know better than to go against my wishes. As tempting as it is to join Oscar, no-one in this family will willingly do so without a fight. Oscar is already in our hearts, our minds and our souls every day and we plan to stay put together as a family.

So back to the juicing, the googling of all things alternative that won’t interfere with the treatment, the shopping for items that are going to make that one little bit of difference in recovery, the meals on wheels from family and friends, the countless phone-calls to the doctors with my latest discovery, the all night messaging with friends to run passed my latest ideas, the smiling to everyone in the playground telling them all: it is what it is.