Today marks a year since our son Oscar was diagnosed with terminal cancer. That sentence makes no sense to us. It sits on the surface, like oil on water. The truth is, his diagnosis is no more real to us now than it was one year ago. It is a bigger truth to you reading this than to us. A part of us are still sitting in A&E, waiting to be told we can all go home. It is an awful truth that we lived so happily that we thought terrible things happened to other people and wouldn’t happen to us. But the lesson the past year has taught us is that the world is indifferent. It is vastly cruel and beautiful. It is both heaven and hell and there is no forewarning of what will await you and how much of each.
For our family, it was DIPG. Diffuse Intrinsic Pontine Glioma. A tangle of cancerous tissue that grows on the brain stem, mainly in children, in the area of the pons that controls your heart and breathing, walking and talking. The survival rate is the same as it was in the 1960’s when Neil Armstrong’s daughter was diagnosed. There has been no progress in unraveling it in all those decades. It is too deep and dangerous to be operated on and chemotherapy can’t pass the brain barrier to kill it. Just over a year ago we walked into Temple St Children’s Hospital after months of tiny symptoms that seemed disconnected and mild but all of a sudden were starting to accelerate. We had missed it, and so had the nurses and doctors who we had questioned in the six months leading up to his diagnosis, knowing something was amiss. Kids get emotional periods. Kids fall over sometimes. Kids vomit with little reason. Kids get lazy eyes and struggle with their language. It was such a soft decline into the underbelly of the world we didn’t feel ourselves sink. We had no idea the most serious illness was slowly encircling Oscar until the tumour was large and at a critical stage. Even then, he was happy and content. He had three incidents of vomiting solely in the morning, each of which lasted a couple of days, spread out over the course of months. New Years it happened and then disappeared but then in early January it returned and its identical pattern was what made us worried. We were fobbed off by a doctor just days before he was diagnosed and it was only gut instinct that made us get a second opinion from my own doctor who said we needed to go to A&E and rule out the most insidious possibilities. We walked into the hospital on this week of last year and sat waiting patiently. And then in the midst of A&E a team appeared amongst the chaos and came over to us, slowly pulling the cold embrace of a curtain around us, closing us off from the world we had happily occupied. That was it. That moment. Our old lives finished, while the new year lay fresh beneath our feet. Our son had terminal cancer. We left the hospital a week later, Oscar recovering from an operation to relieve the pressure of fluid on his brain. We were not ourselves anymore, and neither was the world. We had lost our entire future as a family. All our hopes and dreams and plans. The words of doctors echoed in our ears about buying time with radiation. But the real message they drove home was clear – go live while you can.
That specific feeling, being told to go live, is indescribably hard. It felt like we were released out of the hospital and told that we had to run. That something was coming for our then 3 year old son. And it was going to catch up eventually. But to see how long we could keep ahead of it. So you run. At first you are stumbling, crying, shocked and confused. Then as the months pass, as Oscar did a round of radiation and became stronger and his symptoms disappeared, we ran faster. We began to feel a sense of hope and confidence simply because our heads demanded it to get out of bed in the morning. And you feel like you can run forever if that’s what it takes. So that’s what we’re doing one year later. But a year of running from cancer is no easy task. Doctors refer to this time as ‘the honeymoon period’, where symptoms recede and you are afforded time to make memories. We call this time limbo. We are trapped between our old lives and the horror of the future, in this little bubble. This time, as terrible as it is, is the best things will ever be again and so we cling to it, sucking the marrow out of the bones of each day. For our son, he has shown incredible strength and resilience, the type only a child can. We can proudly say we have given him, and each other, a truly beautiful year filled with surprises and fun and love. And Oscar has thrived in it. While radiation does not work well for every child with DIPG, he was one of the lucky children who had a complete relapse of symptoms, partly due to radiation and also the shunt he had fitted in Temple St which drains the excess cerebral fluid that the tumour creates that had caused his headaches and vomiting. Treatment revealed our son like the sun rising after the darkest night, taking him out of the shadow of illness. And we rejoiced in it. And mourned the fact that unless something miraculous happened medically, it would not stay. This time is like being given the most precious gift, knowing you cannot keep it. While Oscar doesn’t have to bear any of that weight yet, Lar and I have for the past year. It is monumentally heavy. It becomes part of you, seeps deep into your bones. We have valued and loved each other every moment of the past year, but it has taken everything we have to give it our all. We are broken. But this life has also wrought our love deeper into our souls, brought the three of us even closer though we didn’t think it was possible. We are our own little world, and within it, we can shut out everything else.
Our post one year ago about Oscar seemed to touch so many of you and opened up our life to thousands of people who cared for us and our little boy. It was unexpected and overwhelming. A salve when the world felt barbarous. You helped us fundraise an enormous sum of money which became Oscar’s fun fund. It paid bills. It allowed Lar to take career leave without worry or fear. And most of all it allowed for fun. We went on holidays with our families multiple times. Make a Wish sent us to Disneyland. We met the Leinster team, had a box in Croke Park, held the All Ireland trophy and the Euro 2020 trophy. Rented a private cinema. Had endless days out with toys and sweets. Held a huge birthday party in Dublin Zoo and renewed our wedding vows, this time with Oscar getting his own ring too. We also had a card drive for Oscar and got over 5,000 cards and presents at our last total from every corner of the world. Even Richard Osman from Pointless sent Oscar a video to say hello. We held a Christmas in August. We got to go on the Late Late Toy Show and meet Ryan Tubridy and play with all the toys. And most recently we did our toy drive for the hospitals that looked after Oscar this year to help other kids and families who would have to sit in those hospital beds when they shouldn’t have to. It was an exhausting, vibrant, enormous year of living. There were many quiet days too which were even more important and treasured. The ones where we were in our pyjamas watching movies and playing and simply basking in the simple joy of being together. If only I could bottle those memories and preserve the sound and colour and feeling of them.
So here we stand. Miles from where we started. And to reach this milestone is monumental and yet the price is to know that one year is now gone we can never get back. Only 10% of children with this cancer survive to two years. In 2018, we knew of three other families in Ireland who had the same diagnosis. Sadly those three children are no longer here. We cannot accept that the same fate awaits our little boy. Our most beautiful and funny and unique little boy who deserves all the good this world has to offer. But so does every child who has had this cancer, or any other. So now we have to live even harder and larger, knowing what might be gaining on us unseen. So we don’t think far ahead. We keep our heads down. We plan the month we are in. To think ahead would be to unravel, to curl up and disappear into a despair and darkness that there will be no end to. So while we still can, exhausted and worn out, we will still run. And make every day count. Make our love bigger than our fear. You already know it, but it is true. The meaning of life is to love and be loved. To find joy. Let those moments fill your soul. There is sorrow awaiting all of us. So run while you can. All any of us have is the journey.
You can find more information on DIPG here.