It’s just after 6am on Sunday 26th February 2012 and I’m sat gazing down at my son Ollie, in my arms. My husband Simon and our eldest son Alfie watch, deep in their own thoughts, as I stroke Ollie’s hair and stare at his gorgeous cheeky face, his flawless skin and his amazing eyelashes. I think about his eyes, big and beautiful, which would melt anyone he gazed upon. He’s smiling, just a little smile but it is the first we’ve seen for almost six weeks. I give him the tightest cuddle possible, breathing him in and wishing that this moment would last forever.
Just 12 weeks earlier, our five year-old had been your typically cheeky little boy. He would charm the ladies and teachers at school, he’d giggle as he smacked people’s bottoms, race around on his bike and scooter and laugh as he played with his friends.
He’d enjoy tea dates, playing with his local football team… but when he complained of dizziness on Monday 21st Nov 2011, life was about to change for us all.
It was a complaint he made several times over the next few days and we noticed that he wasn’t his normal chatty self. Always a big eater, he didn’t even seem too bothered about his food. A doctor’s appointment didn’t raise any alarms although by then he’d also lose his balance easily and would randomly fall down. For the first time ever he cried going into school, where he was due to practice his role as Joseph in the nativity.
Over the next few days his eating became messy and he would be tearful but unable to explain why. He would fall off his bike and our keen football player suddenly seemed unable to kick the ball properly. He had no energy to play with his friends. Simon and I were sick with worry and made plans to revisit the doctor. In the meantime we researched his symptoms on the Internet. The answers which came back were a very long list starting with ear imbalance and increasing in severity. Our doctor’s appointment was again inconclusive although we did get a paediatric referral, warned that it might take three weeks to come through. We were compelled to insist for an earlier hospital visit when, within two days, Ollie also started dragging his right leg while walking. Within an hour we were being seen at paediatric A&E at the Royal Berkshire Hospital.
It was there, on December 1st and only ten days from that first complaint of dizziness, the shocking diagnosis was delivered. That long Internet list we’d studied had ended with a worse-case scenario and now we were to hear for the first time those very words, bringing our world crashing down; “Your son has a brain tumour.”
It’s hard to explain what goes through your head. Why? Was it my fault, something I did or didn’t do? How can anyone be sure? You’ve got it wrong! Those masses on his brain aren’t benign?. What did ‘benign’ mean again? The questions tumbled round our own brains as we made arrangements for our elder son Alfie and prepared for an immediate transfer to the John Radcliffe Hospital in Oxford.
An MRI scan there the following day revealed a brain tumour the size of a small fist. The good news was that it hadn’t spread to a secondary site. But the location in the brain stem was a major problem. A biopsy would be required to determine the type and grade of aggression of the tumour, but we had to make a decision. Due to its location Ollie might not survive the operation but while there was still the slightest glimmer of hope that it might identify a positive course of action, we gave our permission for the biopsy to be conducted.
That weekend as family and friends visited, our minds were reeling with the potential consequences of our decision. At the same time, having been told that Ollie would be lucky to see Christmas, we were determined to wring out every hour of our time with him.
Can you even begin to imagine what it was like for us to carry our child down for that biopsy, early on the morning of 5th December? Trying to remain outwardly calm we chatted to him about positive memories such as his favourite holidays. We told him how proud we were of him and how much we loved him, all the while being torn apart inside and wanting to run away, screaming, to take him away from everything.
And oh, the sheer bliss, the pure emotion and excitement, four and a half hours later, to hear that he was in recovery and we could see our little boy. And how desperately cruel to hear, riding high on that moment of elation, that it was almost certain that Ollie had a glioblastoma, inoperable because of its location. Ollie might not even make it through the next two weeks.
Chemotherapy and radiotherapy were options, but not viable in terms of Ollie’s prognosis and the side effects which would deny the quality of life we wanted for him.
But what did meet those needs was our move to the nearby Helen and Douglas House hospice. Ollie perked up immediately, a little of the old mischievousness returning to enjoy water fights with the staff in the shower, Jacuzzi baths, movies and milkshakes on tap, massages. His enjoyment at being pampered was only tempered with frustration at not being able to do certain things any more.
Our first week at Helen House was remarkable in many ways, not least because the staff, our wonderful friends from Wokingham and the local community there rallied to organise a wedding in six days. It was one of Ollie’s dearest wishes that we were married and so our long term plans were replaced with the most amazing day imaginable. We’ll never forget his wonderful smile and ‘thumbs up’ which we saw from him time and time again that day.
We even managed the week leading up to Christmas at home, mindful that we were on ‘borrowed time’ and armed with a bucketful of meds, to meet both boys’ wishes to be home for the big day. Ollie refused to let his friends see his wheelchair and decided to be pushed around in his go-cart instead. We had daily visits from nurses and our wonderful family and friends did everything they could to help, but the care routine and the physical practicalities made it tremendously hard work for Simon and myself. We were all cheered by a visit arranged by my sister from Reading FC striker Noel Hunt, who spent three hours with Ollie and Alfie at home.
Friday 23rd December was also special, with a visit from Ollie’s Head Teacher who presented him with a Head Teachers award ‘for bringing joy to others’ and delivered a special gift from him. Christmas Day itself was a strain. We so desperately wanted it to be ‘normal’ but Ollie seemed to go downhill. Poor Alfie wanted us to play games with him but it was so hard to juggle everything.
By the 27th we were back in Helen House, Ollie requiring a syringe driver to be put in his leg to deliver a constant flow of meds to help with his increasing sickness. Another sign of the brain tumour getting worse was that his swallowing action was weakening. Even water could potentially kill him. Steroids gave strength to his muscles and he really perked up again, returning to his cheeky chappy self and astonishing everyone.
So much so that we returned home in early January. Ollie did so well, although unfortunately on the day that another wish was granted with a VIP visit to the Spurs training ground, he wasn’t well enough to make it. After patiently waiting to see One Direction, who paid a visit to our home later that week, he nodded off just after they knocked on the door! Their visit was just amazing and the band gave us so many happy memories. We’ll also never forget that day because we heard Ollie’s final words; “Can I have…” We’ll never know what he was about to ask us.
Ollie had not eaten or drunk anything for days and the insertion of a gastric tube the next day, brought us crashing back down to earth after the euphoria of One Direction’s visit. I felt so relieved to at least be able to give him a drink and felt that he was grateful for having a full tummy. The nurses who visited daily were fantastic. And they had the courage to ask Ollie something we couldn’t bring ourselves to do. Was he scared? He hadn’t said a word to that effect or even asked what was happening to him. “No,” he replied.
Ollie’s breathing changed just two days later and we were warned that our time with him was coming to an end. It just seemed surreal. Only eight weeks earlier we’d been blissfully unaware of any problem at all. Our boy had appeared to be perfectly normal. The reality of his fragile situation really hit home just one day later, however, when he choked at night while I was giving him a hug. We ended up being blue-lighted to A&E and soon found ourselves back in the comforting environment of Helen House.
Ollie stopped responding seven weeks after his diagnosis. Initially he’d open his eyes slightly when I was reading him a story but then one day that was gone too. Each day could have been our last with him but Simon and I didn’t really dwell on this, we didn’t say goodbye as such but simply tried to talk to him just as we would normally do. For the next 5 and a half weeks we stayed by his bedside, cuddled him in his bed and read to him as we knew he could still hear us. We turned him over every two hours to protect his delicate skin. We’d wash him in his bed, or move him, extremely carefully, to the shower room to give him a nice soak. But when the doctors decided to stop his fluids on Saturday 18th February, we knew it wouldn’t be long.
I’m not sure what’s worse, not seeing your child before they die or leave you, or watching them fade away in front of your eyes, while you are incapable of doing anything about it.
The time that we always knew would come finally arrived in the early hours of the 26th, just one day before his sixth birthday. Our brave little son was finally at peace. As I hugged him that morning, lost in this world of Ollie and I, I thought how incredibly proud I was of this beautiful boy I loved with all my heart and soul.
And I resolved that the name of Ollie Young would never be forgotten.
Sarah Simpson, Ollie’s Mum