I would give anything not to be writing these words. Oscar keeps grabbing my hand every time I start to type and I’m happy for the distraction. He’s sitting here beside me, watching cartoons and digging out an array of toys. He likes to wrap his small fingers around mine while he plays. It’s a normal Sunday afternoon affair for him and he is blissfully unaware that anything is wrong. That is the only comfort my husband Lar and I have. But while he sits contentedly, my husband Lar is sorting out hospital forms and I’m wondering how to write this because just over a week ago we were told Oscar, our beautiful, talented, clever, unique little 3 1/2 year old has a brain tumour.
There were small signs that something was wrong in the months leading us to here, but they were vague and seemingly disconnected. Oscar had become more anxious since the summer holidays but reading up about it, it was a phase many toddlers went through. Then on one day in October, the day after my 34th birthday, he had woken up and vomited spit. As the day went on, he improved greatly and that was that. We chalked it down to late teething pains and forgot about it. The anxiety persisted though and we met with our local health care officer who recommended he be referred to an early intervention team to help with his delayed speech and get him feeling his best. They would be able to give him a full physical and mental check up and help return him to his happy, confident little self for when he started preschool in September 2018. We felt happy we had a plan. Then in the very last lazy days of 2017 as New Year’s Eve approached, he complained a few times that his head was sore. Then one morning he woke up and vomited, once more improving as the day went on. This continued for 4 days in an exact pattern we didn’t like, starting as soon as he woke, peaking at him vomiting mostly spit. Once he was sick, he seemed to regain his hunger within a few minutes and while he wasn’t perfectly well, he felt better as the day progressed and slept soundly. It’s an inevitability that kids pick up bugs and will throw up for no particular reason, but it felt too structured. Also he seemed more unsteady on his feet and we noticed one of his eyes had begun to seem a little lazy. On New Year’s Day we rang both D-Doc and our healthcare provider which has a 24 hour nurse on call. We spoke to them both and they said if he wasn’t running a temperature it was fine to hold on and watch him. Sure enough the vomiting stopped and he didn’t mention any head pains. But at that stage we weren’t happy. Something was bothering our son and after furiously googling everything and anything, we had a long litany of possibilities, from teething pains to reflux, all the way down to terribly serious things we chose not to dwell on. Then after a gap of over a week, the vomiting returned and our hearts sank. Lar was in school teaching that day so I brought Oscar over to a local doctor that’s a 5 minute walk away. He checked him out and declared that it had to be a viral bug as his ears, throat and temperature all appeared normal. I walked out dissatisfied and phoned Lar. We both agreed it wasn’t good enough. At that point we decided to book my own doctor for Monday (it was a Friday afternoon at that point) because she’s an incredibly clever woman and we trust her implicitly. Once again, we spent the weekend googling and looking for possible answers. More than once we came across the fact tumours can cause morning vomiting but it seemed such a remote, dramatic conclusion that we pushed it to the back of our minds, agreeing that even if a doctor felt the need to rule that out, at least we’d know he was ok and we’d get to the root of the real problem. By Monday Oscar was already better but as my doctor listened to his symptoms and checked him out, she remarked that she didn’t like his story. That it could be a range of issues but that it was important to rule out the most serious. We all knew what that was although I don’t believe any of us said the words. She gave us a referral letter for Temple Street and said to go in the following morning to ensure a consultant would be available if they deemed it necessary to give him a scan.
The following morning we walked into A & E, surrounded by kids who had been struck down with the flu or had fallen off their bikes and hurt themselves and sat there feeling a little silly as Oscar clearly didn’t look the slightest bit ill. But he was fast tracked into A & E and a scan was carried out. Then we sat waiting for what seemed like forever, checking the time and hoping we’d be home soon for dinner, trying to ignore the current of nervousness running through us. Oscar sat between us, blissfully unaware of what was going on. All of a sudden some important looking consultants appeared out of nowhere and headed straight for us, brandishing friendly smiles and outstretched hands. I remember thinking how nice it was of them all to come down and tell us the results personally. We were still smiling as they pulled the curtain around our bed to give us some privacy. There’s a strange moment that happens when you realise you’re about to get bad news. And the absolute stupid certainty you’ve had up to that point that nothing like that is supposed to happen to you or the people you love. You know that feeling right? When you watch programmes on TV about people struck down with illness and loss, when you’re at a funeral and see a family wreathed in grief. That ridiculous sense of empathy mixed with a certainty that that type of pain will never find your door. That the terrible things that happen in the world are not for you. But then the consultant, his friendly demeanor unchanged, said Oscar had fluid on his brain and a swelling. Lar and I searched their faces, confused. We both started to cry but we weren’t even sure what was happening. They maintained their polite, distant warmth and friendliness. Oscar would have to be admitted and have an MRI and then they would know better. And so, dazed, we were admitted. We stayed in hospital with Oscar, exhausted and terrified and utterly confused overnight while our parents filtered in and out, trying to stay strong and optimistic for us, all of us agreeing this was a lot of fuss for something that would turn out to be nothing. But Lar and I had begun to feel a sense of dread settle over us. Everyone in Temple Street we spoke to was being incredibly kind but in a way that lets you know something is wrong. We veered between utter fear and panic at the prospect of the worst and a long held belief that everything had to be ok. It had to.
The day after he was admitted, Oscar had to be put under general anesthetic for the MRI and just before, we were sent to have his eyes checked. As the ophthalmologist wrote in her file, I saw a piece of paper with 4 words written on it – Diffuse Intrinsic Pontine Glioma. I stared at them and memorised them as I couldn’t draw Lar’s attention to them with her sitting so close. Then we brought Oscar to his scan and he slipped off to sleep. I told Lar what I’d seen and he hugged me and told me not to look up what it meant but 30 seconds later he was on his phone. After a moment he put down the phone and said we should wait until we speak to the consultant but he was already crying and so was I just from the look on his face. But still we convinced ourselves everything had to be ok. If the consultants were only carrying out the MRI now, they didn’t even know themselves yet. After what seemed like forever we were told the consultant had our results. We walked out to the nurses station in the middle of the ward where he was sitting at a computer with the same easy manner that made me feel it had to be good news. If it was bad they’d bring us to some little private room right? We sat down and in front of the consultant the computer showed a scan of Oscar’s brain but to our eyes it looked normal. I felt I could breathe a little. But it was one of many images that were part of the scan and as he clicked through them, there it was waiting as the last image, revealed in all its horrific splendor. A scan of our beautiful son’s brain and something large and alien sitting there. It was a brain tumour the consultant said evenly, called DIPG (Diffuse Intrinsic Pontine Glioma) that was on his brainstem, the area that controls and regulates his heart, his breathing, his functions. It is incredibly rare, with just 3 or 4 children diagnosed with this every year in Ireland. And somehow it had found Oscar. It had sat there stealthily growing while we went about our normal lives, making plans, having fun, and then delivered small flashes of its intention, so subtle we had no idea of their meaning. Lar broke down. I held him but just sat there, in disbelief. What do we do, that was all I could think, how do we fix it. A brief flash of chemo and sickness and hard times flashing through my head was suddenly altogether unimportant in the grand scheme of things. But then came his final blow to us. You can’t cure it. It most often strikes children and it is devastating, with an almost 0% survival rate. Where it was, the type of insidious, aggressive tumour it was meant there was no fix. We stared at him in utter disbelief, two words eventually just hanging there between us. How long. He simply said between a couple of months and a couple of years. Our son was 20ft away in his hospital bed with my Mam at that point. He had come around from the anesthetic like a champ and asked for a bowl of Rice Krispies which he was happily demolishing. And we were here, in some alien part of a hospital we never should have been sitting in, while a consultant kindly patted Lar on the back and shook our hands and disappeared to his next patient. And we held each other and fell apart. Finally, we walked back into Oscar’s small ward in a daze, while every other parent in there lowered their eyes sadly and held their own child close because today they were the ones who got to look at us and be thankful it wasn’t them. I can’t describe to you the pain of hearing what we’ve heard. The slow agony of it. I never knew your heart could break like that, over and over, endlessly. It is so immense it feels like it should kill you, but then you realise there is no release. There is nowhere for your mind to run for answers. You are trapped. Utterly. And you suddenly realise your entire life is disappearing, every day of it you had as a gift ahead of you. The blackness of it engulfs everything. The entire world. And Oscar, our son, sitting in the middle of it with no idea of what was happening. His sweet, innocent face. It broke us. Again and again and it has every day since. And this has only been days. Days into what is now a lifetime of pain and regret and utter heartbreak. There is no place to look to, no horizon. To look at your own child and know they are going to die is utterly indescribable. To know they will never have their first day of school, a first kiss, to travel the world, to go wild at college, to find love, to have children. We were never religious but we both knew with utter certainty in that moment that there was no God. Just a world filled with flashes of beauty and pain, dealing out death and judgement as easily it does joy.
And so here we are. Caught in quite simply hell. Oscar bravely had an operation in Temple Street to get a shunt which was put in his head and runs down to his stomach where it drains off excess fluid on his brain. He recovered amazingly well and his mood lifted enormously, the pressure headaches alleviated. He was even better when we got to leave hospital and come home. And every day has been like a holiday. Lar took an immediate and indefinite leave from work and I was at home with Oscar anyway so now the three of us are together every day, every minute. We’re showering him with toys. He has a line of visitors to see him. He’s happy. But this week we start radiation treatment for 13 sessions, Monday to Friday. He will have to get a general anesthetic every day as he’s too small to stay still. And afterwards the consultants are confident the radiation should be able to shrink his tumour. And it will give him a reprieve. A period of months unknown where he should feel himself, happy and carefree. But after that we don’t know. These tumours nearly always grow back. The median survival for this type of brain tumour is less than a year, with less than 1% of children surviving to 5 years. And now Lar and I look ahead wondering if our boy will be with us at Christmas. Will this be the last year we have him here. And we wonder how we will bear the eternal agony of our days ahead. Can we bear all his pain so he won’t have any? We have to be brave for him and each other, we have to give him every bit of ourselves to protect him. And we have to protect each other. To know your son is so ill and to watch your soulmate crumble before your eyes is beyond pain. I wish I could bear both my pain and Lar’s but I can’t. But for every moment I fall apart Lar protects me and I do the same for him. I honestly couldn’t do this without him, I would simply disappear. Our parents, heartbroken and terrified have been unfailingly strong. And the guilt you end up feeling because you are ripping a future from them too and the enormous love and light they’ve got from this tiny person. Oscar is one of those magical kids everyone loves. Beautiful and funny and completely himself. He’s as pure and wonderful a thing as there ever has been in this universe. And through all this his world remains intact, a world where Minions and Mickey Mouse are real, where every day is filled with love and fun, where he is cocooned by his parents and never has to worry about a single thing. That is our only comfort. But we live in constant fear now.
All any of us have in life is the illusion of time, but to see an end to it in sight is something else entirely. Everything has been stripped away. We veer between devastation and a strange numbness where your brain simply refuses to believe things aren’t going to get better. And yet this is still the best time of our lives, even now. Lar and I know there will be a day in the future where we would give anything to be here in the midst of this agony because our boy is still with us, still happy, still filling everyone’s hearts with joy. So we are living each day, not looking ahead, living in the moment as we finally realise that’s all any of us have.
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Experimental treatment isn’t an option for Oscar, we were told by the experts anything that had any real results would of course be offered to us but as of now, the only thing that works is radiation and only for a time. So we are starting a GoFundMe page, but simply to give our son the time of his life for however long that is. Trips away and days out and ice creams and toys and anything else. A GoFundMe to help bring him joy. We will also be donating money from it to research and charities in Ireland. We aren’t going to ask you to dig deep, if you have something to spare and want to give it we would be hugely grateful, but we would be just as grateful for your hopes and kind thoughts for Oscar. We have also started some social media pages for DIPG as it is incredibly rare and brutally underfunded. We hope it can be a resource to other families who have dealt with, are currently dealing with or unfortunately may meet this diagnosis in the future. Our eternal thanks go to the staff of Temple Street, Crumlin Hospital and St Luke’s Oncology Hospital who have looked after Oscar and us so well.
We have also started pages for other families affected by DIPG. Please visit any of the links below and follow us to keep track of our story and support others. Thanks for reading.
The online community has been overwhelming in their support and the blogging community in particular has really shown how amazing it can be. With huge kindness, Sinead from The Beautiful Truth and Edel from The Pharmer’s Journal have set up an event in March to fundraise for us with loads of amazing bloggers including Louise O’Connell who is a fantastic blogger and has been a huge support. I’ll update this post with all the details as they’ll be putting tickets up for sale later this evening but we owe them an enormous thank you for their generosity and thoughtfulness.
