In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
Ollie lived in Aston Clinton near Aylesbury with his mum Jane, dad Peter and younger brother Theo. He was diagnosed aged 10 with a medulloblastoma brain tumour and underwent surgery which left him with posterior fossa syndrome (PFS). Despite lots of treatment, the cancer returned and the family were told that there was nothing further that could be done. Despite going to Germany for pioneering immunotherapy treatment, Ollie passed away, aged 13, in November 2017.
Here is Ollie’s story, as told by his father, Peter…
Ollie was a fun-loving boy, so full of life and enthusiasm. He had a great sense of humour and loved the outdoors, sports and particularly cricket. Aged 10, he completed the 25k Mix96 Tour de Vale cycle ride.
Up until May 2015 we were an ordinary family, with our two young sons, although we had been getting increasingly concerned about our eldest son, 10-year-old Ollie. The date 19 May 2015 is one that will forever be burnt into our memories.
A few weeks previously, Ollie had had what we thought was a tummy bug. He had been sick and suffered from headaches. Ollie was a pupil at Aston Clinton School and we followed their advice and kept him off for a couple of days to recover and also kept away from the GP surgery so he couldn’t pass on the bug to others.
Soon Ollie seemed as right as rain, but then a week later, the “bug” returned. Our GP ran blood tests and various causes were suspected and rejected. After two more GP visits, we began researching Ollie’s symptoms on the internet. We paid privately for Ollie to have an MRI scan to rule out the diagnosis we most feared.
The scan took place on 18 May.
The following day, I received the phone call that totally changed our lives. A mass the size of a golf ball had been found in the back of Ollie’s brain and it had to come out, fast.
We went straight to Stoke Mandeville A&E and were immediately put in an ambulance and rushed to the John Radcliffe Hospital in Oxford where we were met by a neurosurgery team. In a small room, the brain surgeon told us the facts.
“Ollie had a brain tumour. It had already spread and so was almost certainly malignant. I didn’t know what malignant meant and was shocked by the answer that it was cancer. Over our sobs, the surgeon said: ‘If we don’t get it out, it’ll kill him’.”
Ollie’s tumour was growing into his brain stem. Depending on how the surgery went, Ollie could emerge as a paraplegic, a quadriplegic, or, if the nerve to the heart was cut, he would die. This was all spelt out in black and white on a consent form which we were asked to sign.
On 20 May, Ollie went into surgery at precisely 1.10pm. Then followed the longest 10 hours of our lives. At 11.00pm we were allowed into intensive care to see our little boy. He was unconscious, but had already twitched his feet, legs, hands and arms – he wouldn’t be a paraplegic! The relief was enormous. However, it was short-lived. Only half the tumour had been removed and Ollie had lost half of his blood. The news hit us hard.
Worse was to come. A week later Ollie had lost the power to speak, stand, swallow, or use his right arm or leg – a condition known as posterior fossa syndrome or PFS. We prepared to say goodbye to our beloved son.
Ollie held on and days turned into weeks. He underwent further emergency craniotomies and still he held on. We found out Ollie had a medulloblastoma brain tumour.
Slowly a plan was formulated to fight back. Ollie would undergo chemotherapy and radiotherapy, as well as intensive physiotherapy, speech therapy and occupational therapy to recover his physical abilities.
Ollie took all the “poisons and rays”, prodding and poking, with incredible bravery and good humour. We were so proud of him and the nurses and doctors loved that he never forgot his “pleases” and thank yous”, even in the dead of night.
Following three cycles of chemotherapy lasting four weeks each, Ollie was able to walk again. Then he began 34 cycles of radiotherapy lasting seven weeks.
In September 2015, Ollie started secondary school at the John Colet in Wendover defying the odds and all expectations and also began a further seven cycles of chemo, running through until April 2016.
“He had his end of treatment MRI scan and we all cried the day Ollie walked out of his paediatric cancer ward for the last time, ringing his chemo bell as loud as he could. We started to believe Ollie could beat the disease.”
We booked three holidays and got to enjoy two of them. The day after we returned from Menorca, in September 2016, Ollie had a routine MRI scan. Several days later, I had a phone call from the hospital. There was some evidence of tumour regrowth.
“We rushed to Oxford to be told the worst: Ollie’s cancer was back and now had spread all over his brain and into his spine. Then we heard the words we will never forget: they didn’t think they could cure this one.
If we did nothing, Ollie would only have a few months left, or this could be extended as much as six months with oral chemotherapy. We took the latter option and once we had recovered slightly from the shock, started to look into what we could do.
I found a trial in Washington onto which Ollie was accepted, but they needed $169,000 from us before they would even look at him. To raise that we would have had to sell everything, but we were prepared to do it. The doctor then told us the trial was unlikely to help Ollie but had we heard of metronomic and targeted anti-angiogenesis therapy (MEMMAT) for children with recurrent or progressive medulloblastoma?
I spent every spare moment on the internet, speaking to doctors and families all over the world and learning more about MEMMAT and its trial headquarters in Austria. We discussed the treatment with Ollie’s oncologist and he dropped the bombshell that the NHS wouldn’t pay for any more treatment for our now 12-year-old son. It was horrendous and very frightening to learn that from now on we were very much on our own.
We decided to start fundraising, not realising that several of our friends and neighbours had been waiting for this moment. Help was very quickly forthcoming and not just from our local community, but also from people we had never heard of or met.
But just as we prepared to move to Austria for up to two years, we found a specialist in Harley Street, London, who could treat Ollie and who had been part of the original MEMMAT trial in Boston. The estimate was £440,000. We were shocked, but our fundraising team was confident we could achieve it.
Within a week we had raised £39,000 and a week later £100,000. The Ollie’s Fund crowdfunding finally reached an amazing total of almost £500,000. We can never repay the love and support we were shown by our wonderful community but will be forever grateful for everything which was done, including events we knew nothing about. Incredibly, we had enough to begin treatment and went off to Harley Street for the first session.
Having spent most of the previous 18 months in hospitals and clinics you would have thought we’d be used to it, but we were surprisingly nervous on our first day at Harley Street. My nerves got even worse when I was immediately presented with a form to sign listing some of the costs of what was about to take place. We had already had to put £75,000 on account and we had had to borrow that against our house in the short-term while waiting for the incredible amount of money raised by our awesome community to become available.
“Ollie’s treatment began at Halloween 2016, with us going down to the operating theatre where they injected a chemotherapy drug directly into his brain fluid. He had to remain totally still. But after so many MRI and CT scans, Ollie was a master of lying still and amazed the doctors by not even flinching once during the whole procedure.”
The plan was for Ollie to undergo this procedure 10 times every four weeks over the next two years, whilst receiving Avastin every other week. Not needing an anaesthetic had an enormously positive effect on the cost of the treatment. Our oncologist said Ollie was the first patient he had ever given an intrathecal (into the brain) injection while conscious.
At the end of the day we were presented with an enormous bag of pills and potions – £2,634 worth! The pharmacist went through how each should be taken: some in the morning, some mid-day, some evening, some at bedtime, some with food, some after food and some on an empty stomach. Although we were provided with a helpful crib-sheet, we ended up installing an app on my phone to assist with these complexities.
“We left the hospital exhausted, but elated. The treatment we had thought didn’t exist was now underway and the fightback was on.”
Devastatingly, however, in early July 2017, an MRI scan confirmed that some tumours were continuing to grow. We were left with three options: palliative care, a different type of chemo or experimental immunotherapy abroad.
We dismissed the first option immediately – we were not prepared to give up the fight. The oncologist thought the second option would be unlikely to succeed, which left us with the third option.
So, just three days later, we flew to Cologne to meet pioneering specialist in immunotherapy, Professor Stefaan van Gool. The plan was to use modified chicken flu and Ollie’s tumour tissue to create a serum which would stimulate Ollie’s immune system and hopefully make it attack the cancer. They also ‘harassed’ his tumour with a loco-regional electro-hyperthermia device known as an EHY-2000 intended to treat deep-seated tumours.
Ollie was treated as an out-patient in Germany which involved us staying in a hotel for two trips lasting two weeks and then a third lasting a further week.
Early in August, Ollie had a massive seizure and showed no signs of recovering. We dropped all plans for further treatment and begun discussions about final arrangements. Ollie had other ideas however. A week after the ambulance had rushed him into hospital, he started to make slow, steady progress every day.
We went to see our private oncologist and he willingly gave us the go-ahead to return to Germany for more treatment. Ollie completed a second cycle of immunotherapy in Cologne and returned happy and enjoying life.
Ollie returned to school in September 2017 defying all predictions. It was a great day. We pinched ourselves and silently asked: “Does this mean the immunotherapy is working?”
“For well over two years, Ollie had undergone a daily regime consisting of an enormous number of drugs, including medicines so toxic that we had to handle them with rubber gloves while placing them in his mouth.”
But this had all changed now. Ollie was taking very few pills and none of them for cancer because all conventional treatment had failed and the oncologists, both NHS and private, had given up any hope or interest.
“For the next few weeks, Ollie’s speech became clearer and his energy levels increased. It was wonderful to have our smiley, happy child back. We enjoyed the closest thing to normal family life since early 2015.”
At the end of September, Ollie was back in Harley Street for an MRI scan that would tell us if the immunotherapy was working. We knew that scans after immunotherapy were hard to interpret, since tumours can swell due to immune response, giving the impression of tumour progression, while they are in fact in the process of being destroyed. So, we didn’t panic when we were told that the scan showed more tumour and more spread. After all, apart from a little tiredness, Ollie seemed to be in very good health and was attending school every day.
The scan was couriered out to Cologne for the professor’s opinion. When we received his call, it was a hammer-blow to us. In his opinion, the scan showed disease progression, rather than immune response. It was so hard to reconcile the stream of bad news with how well Ollie seemed. We could only hope the professor was wrong, since this was the first time the treatment had been used for Ollie’s cancer type. We vowed to try and keep our hopes up while enjoying our time with Ollie and researching our next plan.
We flew back to Germany with Ollie for tests to see if the experimental immunotherapy was having any effect. When we received the results, it was a surprise to be told that there was a “good response”. For a long time, doctors had been saying Ollie was in a far better condition than they would have expected from his scans; now we were seeing Ollie, who was by then in a really poor state, while being told the immunotherapy is “working”.
A week or so later, we prepared to meet our private oncologist to decide what to do next, having been offered the opportunity to return to Germany for more treatment, but knowing that currently Ollie wasn’t in a fit state to make the journey.
Disturbingly, by October half-term, Ollie had experienced a massive seizure and the effects of the tumours on his brain were becoming all too clear. Tragically, the good days were now very much outweighed by the bad.
Ollie continued to deteriorate further and slipped into unconsciousness a week later. He was at home, comfortable in his own bed and surrounded by the love of his family. A team of wonderful nurses were helping us to care for him and Ollie was peaceful and not in any pain.
“Early in November, a doctor looked me in the eye and told me our child was dying. To say it was like being hit by an express train didn’t even come close.”
Ollie was deeply unconscious and nobody expected that to change. However, despite the long hell cancer had already put us through, it still had one more torture to dish out.
Four days after slipping into unconsciousness, Ollie briefly opened his eyes, but they didn’t move or apparently see anything. The following day, his eyes fully opened and we were excited to see them moving and tracking us around the room. Over the coming days, he continued to recover consciousness but there was something obviously wrong.
Ollie’s incredible strength and fighting spirit may have yet again brought him back from the brink, but even he couldn’t stop the extensive damage being caused to his brain by the ever- growing tumours and that damage was now catastrophic.
On 19 November 2017, at home with Jane and me holding his hand, our 13-year-old son Ollie passed away.
“We feel tremendous guilt that despite all the enormous support and fundraising from the community and all the treatments we pursued to keep him alive, we failed Ollie, but the sad fact is that much more research is needed to find a cure for this devastating disease.”
Two years after losing him, we are trying to come to terms with what has happened and continues to happen to other children.
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
Together we will find a cure.