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


SLIDING DOORS

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

MAKING A DIFFERENCE

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

https://www.independent.co.uk/news/health/brain-tumour-children-medulloblastoma-chemotherapy-radiotherapy-survival-testing-cancer-nhs-a8538136.html


oscar hospital

WHEN HEARTBREAK STOPS BEING ROMANTIC

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.


THE ONLY WEALTH WE HAVE IS OUR RELATIONSHIPS

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.

 


LOSING MY BREATH AND NEVER QUITE CATCHING IT AGAIN

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.


IF LOVE COULD HAVE SAVED YOU, YOU WOULD HAVE LIVED FOREVER

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


HERE WE GO AGAIN

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.

Marie


Major series North 17

Hope is stronger than fear

It happens in life that we find at some point that we are not the only ones to walk a certain path or go through a certain experience. That is normally a great thing – there is comfort in sharing and feeling part of a group.  One group no one wants to be part of, though, is the ‘parents of children with cancer’ group.  This past month another little boy close to some friends of ours was diagnosed with a brain tumour – the same as Oscar’s – and it devastated me.  This boy has all the best medical experts and support around him and his family to ensure that he will get through this, and even in the relatively short time since our charity launched there is new research underway that will one day change how these tumours are treated. I’m so proud that the work that we’ve done in the last 2.5 years allows us to be part of this ground-breaking research.

This little boy’s diagnosis reminded me of the frustrations I felt when Oscar was ill. I would go for drives at night time when no one else was on the roads and I would use the car to scream in - it is very much out of my comfort zone to scream, but it needed to be done sometimes and it would make things a little easier to manage. Needless to say I always felt a little stupid just in case someone saw me (I don’t think they did, but if so then I am most likely not the only crazy person driving around screaming life’s pain out!).

Now I tend to cry more than scream, but I still use my car as the place where I let my emotions run wild; some days I can chat happily away in my car keeping Oscar up to date on what we’re doing, but inevitably I always end up crying a little. It is still so hard to keep it together every day so I have to have my outlet. I often stop the car somewhere, have a good cry, look at myself in the mirror and tell myself that we’ll be fine. I look into my eyes and will myself not to cry anymore, then I tap my cheeks a bit – sometimes they need slightly harder slapping – to start looking normal again, breathe deeply and centre everything inside me. I have never done yoga or meditation or any of that but I have my own method of focusing and aligning points inside myself. I am a great believer of mind over matter – ironic I know!

While it was not to be for Oscar, the fight against brain tumours continues and the work we do keeps me focused.  Knowing that the funds we have raised so far are being used on research programmes that could one day change how children with brain tumours are treated is a surreal place to be in after such a short time.  Knowing we can provide some kind of hope to other families makes me so proud of what all our supporters and fundraisers have achieved.

This boy’s family needs hope – hope can carry you through the darkest of times.  They found our charity and can see the potential difference the research we aim to fund can make to children like their boy.  They are a strong family and I want to deliver more hope to them.  If only I could deliver it wrapped up and make it carry them through the coming months as their son goes through treatment. I can’t do that, but I can carry on with the work that the charity is doing and continue to raise funds to fight paediatric brain tumours.  This weekend I’ll be joined by 84 other people running through mud and over obstacles in the Major Series North.  We’ve run it previously for Oscar but this time we’re doing it for a little boy and his family who need all our strength, hope and courage.

Marie