In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Toddler Harry Crick, from Elmswell in Suffolk, was diagnosed with a rare brain tumour in December 2020, after he became unwell with a cold and was unsteady on his feet. His tumour is classified as grade 4, meaning that it is very aggressive, with a devastating prognosis of just 12 months. The inspiring two-year-old has undergone two brain surgeries and gruelling chemotherapy in an attempt to keep the tumour at bay. More recently, Harry and his family travelled to Essen in Germany, where the brave tot received proton beam therapy, to try to give him the best possible chance of survival.
Harry’s dad Matt tells his story…
On 17 December 2020 our world came crashing down, when our beautiful one-year-old Harry was diagnosed with a brain tumour. For Harry’s mum Nelly and I, it was our worst fears coming true. We felt so helpless as we were thrown into a world we knew little about. We had to hand our precious baby into the care of strangers, who would use all of their skills, knowledge and expertise to try to save his life. All we could do was hope and pray.
Prior to receiving the devastating diagnosis, Harry had only been ill for a few weeks. He’d been off his food and he’d become unbalanced when he was walking. Then, Harry rapidly went downhill over the course of the few days and he was rushed into Addenbrooke’s Hospital in Cambridge for an urgent review. They did an MRI scan and not long afterwards, we were shown his scan images, which revealed a tennis ball-sized tumour growing in the back of his brain. Within days he was rushed into theatre, to have a procedure to relieve the build-up of fluid on his brain, after suffering seizures caused by the increased pressure.
On Christmas Eve, Harry had a major operation to remove the tumour. A 10-hour surgery, which felt like a lifetime. But finally, after an agonising wait, we had some positive news. The magnificent neurology team at Addenbrooke’s had managed to remove the whole tumour. It was the best possible outcome. Harry recovered amazingly well, showing such strength and bravery. He continued to wow us all and was back to himself within days; sitting up, crawling and communicating just as he had before the op.
“Harry had to regain strength in his legs to be able to walk again but, amazingly, he was back walking just two weeks post-surgery. He was such a star!”
On the 4 January 2021, we received the results from Harry’s biopsy. His tumour was high-grade. How could our 22-month-old baby have cancer? Nelly and I screamed, shouted and cried until we had no tears left. Then, we felt completely numb. We were told we would have to wait for more results from London to know exactly what type Harry’s tumour was but it would definitely need urgent, high dose chemotherapy.
We were able to bring Harry home for a week while the oncology team got everything in place. We made the most of that time and Harry got to belatedly open all his Christmas presents, surrounded by his family.
On the 18 January we were told the name of our ‘enemy’; an embryonal tumour with multi-layered rosettes (ETMR). It is a rare and very aggressive tumour. Once again, we had the breath knocked out of us. How could something so evil be growing inside our innocent, beautiful boy’s brain? We will never know the answer. Harry’s consultant told us the battle would be hard but Harry had a chance of winning it and he was in the best possible place.
On 20 January, Harry began his first round of chemotherapy and we met the wonderful team and other families on the children's oncology and haematology ward at Addenbrooke’s – C2. Before starting chemo, Harry had to have his stem cells harvested and frozen. This was amazing to watch and they collected 6.5 million, which would be frozen and then defrosted and put back in, to help his recovery after the treatment. Cycle one of the chemo hit Harry really hard, as the side effects were brutal. His hair fell out, he got a bad infection in his Hickman line and he suffered from awful nausea and sickness. We watched in horror as the harsh drugs poisoned his little body. Seeing him suffer every single day was heart-breaking and knowing that some of the side effects would be life-long made it all the more difficult to swallow. His hearing and fertility will be affected forever.
“Once again, we were left feeling helpless and guilty that we couldn’t protect or save him from this evil. The gut-wrenching pain never let up.”
Harry’s second birthday, on 8 March, fell during cycle three of his chemotherapy. We decided to celebrate early, on 28 February, to allow us to spoil him for the day. He was able to have his big brothers Olly and Finley with him, as well as his nanny and grandad. He was so happy as he opened his presents surrounded by all his favourite people. We are blessed to have amazing family around us, who continue to pick us up and keep us going through the darkest of times. We don’t know what we would have done without them.
In March, as Harry continued to recover from his third cycle of chemotherapy at home, we decided to begin fundraising for Brain Tumour Research. Through our own awful experience, we quickly learned just how devastating this disease is. There just isn’t enough funding into research to help find a cure for brain tumours. The treatment is gruelling and the prognoses, all too often, are heartbreakingly short. Through setting up a Facebook fundraiser, we raised £2,275, which is just shy of the equivalent amount it costs to fund a day of research at one of the charity’s Centres of Excellence. We were really humbled and overwhelmed by everyone’s generosity.
In April, we were delighted to receive a set of clear scan results from Harry’s latest MRI, which showed that the chemotherapy was working. Given the aggressiveness of ETMR, we were so relieved and thankful that Harry had responded well to his chemotherapy and was continuing to put up a good fight.
“However, our elation didn’t last long, as, at the end of May, we were told the shattering news that Harry’s tumour had started to grow back.”
Discovering he had relapsed so soon was utterly devastating. Harry was rushed to Alder Hey Children’s Hospital in Liverpool, where the wonderful brain surgeon Mr Conor Mallucci agreed to remove the small nodules, which were re-growing. Harry’s eight-hour surgery took place on 3 June. Mr Mallucci managed to remove all remaining traces of the tumour, and once again, Harry showed this monstrous disease who’s boss. He was discharged after just eight days and continued to gain strength every day.
Following his second craniotomy, we were told that Harry’s only chance of survival was to have radiotherapy. Given Harry’s young age, this wouldn’t come without significant side effects, which could impact his development. Thankfully, Harry was accepted for proton beam therapy, a more targeted treatment, usually reserved for paediatric brain tumours or when the tumour is located in a position where standard radiotherapy might damage crucial, healthy parts of the brain. That was the good news. The bad news was that, because of long waiting lists caused by the pandemic, there was no capacity for Harry to have the treatment in the UK. So, in June 2021, we travelled to Essen in Germany, where Harry was put on an eight-week course of the potentially life-saving treatment.
Relocating to Germany was bitter-sweet. It was a huge relief to know that Harry was getting targeted treatment that would limit the side effects on his young brain. But being away from home for nine weeks, in an unfamiliar country, certainly took its toll. Nelly, Harry and I travelled to Germany with my mother-in-law, Miranda, and Harry’s five-year-old brother, James. Heartbreakingly, Harry’s other two brothers, nine-year-old Olly and Finley, who is 10, had to stay in the UK with their mum and we missed them terribly.
Harry’s treatment at the West German Proton Therapy Center (WPE) involved 30 sessions of daily radiation, which had to be administered under general anaesthetic, to ensure he laid completely still. As always, he approached it all with a smile on his face and with more strength than you would think possible for such a young child.
A highlight of our time in Germany came in July, when the England football captain, Harry Kane, took time out of his last day of training before the Euros final, to send our own Harry a special video message. Addressing my eldest son Olly, Harry Kane said he’d heard that his little brother was going through a tough time and he wished little Harry all the best on behalf of himself and all the England team and staff. The game may not have gone the way we wanted but receiving that video definitely put a smile on all our faces and cheered us all up immensely. It also captured the imagination of England fans back home, as the story was covered in media outlets up and down the country, including Sky News, ITV and the BBC News website.
Harry has also continued to inspire amazing members of our Suffolk community to fundraise in his honour. At the beginning of August, our family friend Rhys Carpenter began a month-long cycling challenge to raise money for Brain Tumour Research. He set himself the ambitious target of cycling 844 miles over the course of 31 days, which is double the distance between Elmswell and Essen. It means so much to us that Rhys is undertaking this amazing challenge in support of Harry.
We recently flew home after 60 days in Germany; 60 tough days away from our family, our friends and our homes but we would do it all again in a heartbeat. Anything for our warrior boy. In spite of going through 30 sessions of proton beam therapy, which involved 30 days of sedation and being nil by mouth, Harry did amazingly well. Every day he shows more and more signs of recovery from the brutal side effects of the chemo and his brain surgery. He is walking well, sometimes he even runs! His beautiful hair is growing back. He is eating again and developing a love for his nanny’s roast dinners. Our hearts could burst seeing him laugh and play. He is our fun-loving, hot-headed ‘King Harold’, still the same after everything he has endured.
“Of course, there are days when he feels tired and this will continue for weeks, maybe months, after radiation. Even though he rung the end of therapy bell at the end of our stay in Germany, treatment is far from over for Harry.”
We have very difficult decisions to make and serious discussions to be had with Harry’s consultants. There are doctors all over the world collaborating on the next steps and we are extremely grateful for their expertise in ETMR.
But for the next few weeks we are going to enjoy the time all together, catching up with family and friends. We remain forever grateful to all those who have supported us over these past difficult few months and for everyone’s prayers and generosity. It means the world to us. Harry has a big army behind him and together we will keep on battling until the war is won. Harry fuels our fight and keeps us going when, at times, we can’t see the light. I couldn’t be any prouder and I am constantly in awe of him. Harry is a warrior, who brightens up our world. We call him ‘sunshine boy’; always happy, always smiling. He is strong, he is brave, he is ‘Our Harry, Our Hero’.
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 historically 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.