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Popular blogger reveals son’s heartbreaking battle with cancer

The woman behind the blog MakeUpMonster.ie, otherwise known as Yav, has revealed her son’s heartbreaking battle with cancer.

After announcing her plans to take a step back from blogging and revealing that her husband Lar was leaving work to spend time with their three-year-old son Oscar, Yav has revealed that their beautiful baby boy has a brain tumour.

In an emotional blog post, Yav wrote, “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.”

The beauty blogger went on to detail the months leading up to Oscar’s diagnosis, and explained that there “were small signs that something was wrong”, but there “were vague and seemingly disconnected.”

Then in early January, they were referred to Temple Street for a scan, and they soon realised that something was seriously wrong.

“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,” she wrote.

“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.”

“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,” she explained.

Yav went on to detail the moment the consultant showed her and her husband the scan of Oscar’s brain.

“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.”

“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.”

Oscar 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 from his brain.

This week, he starts radiation treatment for 13 sessions, and afterwards the consultants are confident the radiation should be able to shrink his tumour, leaving 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,” she wrote.

“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.”

Yav also revealed that experimental treatment isn’t an option for Oscar, and they were told by the experts that the only thing that works is radiation, and only for a time.

So, they’ve started a GoFundMe page simply to give their son the time of his life, for however long that is.

They’ve set up the GoFundMe to fund “trips away and days out and ice creams and toys and anything else”.

Yav also said they will 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,” she continued.

“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.”

Yav also took the time to thank the online community for their overwhelming support, and added that Sinead from The Beautiful Truth and Edel from The Pharmer’s Journal have set up an event in March to fundraise for them.

The event will take place on March 11th at Killashee House in Naas, and Pippa O’Connor, Louise McSharry, Aimee Connolly and more have already agreed to speak at it. The event also promises prizes and afternoon tea. Tickets cost €50.

Read Yav’s blog post in full HERE.

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