Xander Deeley was a bright and brave young boy who loved to dance and run on the beach. He was adored by his family, including his elder sister Elora who is now 8-years-old, and they regularly played games together.
In Spring 2019, around 18 months before Xander passed away, he began getting very lethargic, uncharacteristically grumpy and he was sick most mornings. He began staggering to one side when he was walking or running and he was losing weight too.
Xander often had to miss nursery due to his sickness and his mum Jo would work as a claims technician for loss adjusting firm from home so she could care for him. It was almost impossible to make plans together as a family as they never knew how Xander would be feeling. Xander’s dad, Matt, often took Elora out for the day whilst Jo and Xander stayed at home.
Jo took Xander to see the GP three times but his symptoms were routinely put down to an ear infection or a sickness bug. They were told to go to A&E if they had further concerns. On the first trip to A&E at Heartland’s Hospital in Birmingham, Xander’s symptoms were put down to a childhood virus. On the second trip, Xander was pale, sweating and vomiting over himself yet doctors still said it was a bug or virus.
She said: "Xander just wasn’t himself and the constant vomiting when he woke up was also disturbing and upsetting for Elora. The GP kept prescribing antibiotics but they obviously didn’t help so we became very worried which was very frustrating. I wanted them to test him for something – just I didn't know what."
“They say a mother's instinct is rarely wrong. I knew that there was something terribly wrong with Xander. I did, however, think that it was going to be some sort of chronic long-term illness as opposed to cancer. Of course, no one ever suspected a brain tumour in a child so young because it's fairly rare."
It was only when Jo came across The Brain Tumour Charity’s Headsmart campaign when searching online for information that she recognised some of the symptoms and so she mentioned the Charity’s campaign on their third trip to A&E. Prior to this, the family had no knowledge of the disease aside from a close friend losing her mother-in-law to a brain tumour. Headsmart aims to raise awareness of the signs and symptoms of brain tumours in children and young adults and is part of The Brain Tumour Charity. Jo’s mum contacted the Charity and she was sent an information pack as well as a goody bag for Xander.
Jo said: “On that second trip to A&E, the doctor told us that she was totally confident that nothing serious was wrong with Xander and that he would improve at home. On the third visit to A&E, I mentioned that I had read the Headsmart campaign card and that I was concerned that Xander had a lot of the same symptoms.
“He was very sleepy and miserable that day so they did a blood test which found that his blood sugars were low. They finally admitted him to the children's daycare ward and, when he was finally seen by a consultant, he quickly noticed Xander staggering to the side and suggested an MRI scan. At this stage, it was clear they were thinking the same thing that I was and that my son could have a brain tumour.”
The MRI diagnosed the mass on Xander’s brain on 9th July which was confirmed after his surgery to remove it three days later as an ependymoma. This type of tumour does usually have a high regrowth rate and the family were told that those diagnosed with it usually have a prognosis of around five years.
The family spent the first night at Heartlands Hospital Children's A&E before they were blue-lighted to Birmingham Children's Hospital where his treatment continued. Xander had three operations and three rounds of chemotherapy as well as six weeks of radiotherapy at the Queen Elizabeth Hospital in Birmingham. He also had a week of high-dose radiation in June 2020 when tumours were found on his spine.
Jo said: “It was never indicated to us that Xander could be totally ‘cured’ and that he would go on to live a normal life. So, we always knew that we would lose him and it just became a case of when. Ependymomas rarely spread to other parts of the body, but we knew quite early on that Xander's had spread to his spine. Before the third surgery, we were told flatly that if the surgeon could not remove every piece of the remaining tumour that we would undoubtedly lose him. That surgery failed so radiation was just a way to prolong his life but we didn’t know for how long.”
Jo took time off work and went on sick pay so she could focus on caring for Xander. She spent over 56 nights at the hospital and six weeks away from the family home as Xander had radiation treatment. This meant time away from her daughter so the rest of their family, including Grandparents, helped out with Elora’s school runs whilst Matt had to work as a dental laboratory assistant. They also had to isolate whilst Xander had chemotherapy.
Jo said: “Xander was the only thing that mattered during that time but it was physically exhausting and I was constantly worried about him. Watching him in pain was the worst thing imaginable but I had to keep it together for him and for Elora. Xander was nothing short of incredible. He soon was well-known to the nurses who accommodated his autism and communication methods as he was non-verbal. He smiled every time we went back into the hospital and he high-fived the nurses to show that he was happy. He danced on the bed and laughed whilst having his chemotherapy drugs administered. He overcame every setback – when he lost the ability to swallow he learnt to eat again with baby food and soft snacks. Nothing phased him. He was a warrior and I was so proud of him.”
The family were told that Xander could possibly have proton beam therapy instead of radiotherapy but this was then ruled out as his tumour was too big for this type or treatment. Due to lockdown, there were no clinical trials which may have otherwise been available to the family. Lockdown had also meant that a family holiday to Walt Disney World in Florida had been cancelled so, instead, the family had fun at home making irreplaceable memories together, including with Matt who was furloughed.
Supportive friends and family who had heard about Xander’s diagnosis sent them treats and local companies sent them gifts including a bouncy castle, picnic hampers and a safari tepee.
Jo said: “Lockdown was both a blessing and a curse. We wanted to make the time with Xander special but, of course, that was difficult with all of his favourite places closed. But we didn’t want him to pass away after being stuck in the house for months on end. We were terrified of Xander or any of us catching Covid and having to be away from him in hospital. So, we were all at home together enjoying the sunshine and having precious quality time together. When lockdown ended, we spent an incredible two weeks in Woolacombe where Xander ran wildly on the beach, loving life.”
Xander returned to school in September and he did a few hours each week for four weeks. However, he then caught a cold and Jo began to notice some all-too-familiar symptoms returning, including staggering to one side, tiredness and sickness.
He had another MRI which revealed multiple tumours in Xander’s brain as well as down his spine. The consultant told the family that it was one of the most aggressive ependymomas she had ever seen. The heartbroken family returned home having been put in touch with the palliative care team knowing that their time left with Xander was significantly limited.
Jo said: “From that moment on, Xander was never comfortable. He was holding his head awkwardly, he stopped moving so much and he slept more as the medication knocked him out. The steroids increased his appetite and he gained a lot of weight so he became almost unrecognisable.
“He was sweating a lot and crying often. He also became very agitated at night and would kick out at me, which was so uncharacteristic for him as he was such a gentle soul. Finally, he lost his eyesight as one of his eyes turned inwards.”
The family were told that Xander may not make it to Christmas so they celebrated the season in November instead. He did keep going until the big day in December though so the family enjoyed it all again on what would be their last festive period together. Xander sat at the table with the people who loved him to eat his dinner and he wore the paper hat from his cracker.
Jo added: “After dinner, he got up from his chair and walked into the living room which was incredible as he had not been on his feet for some days. He really did want that last Christmas Day with us. We allowed him to plough his way through a whole tray of chocolate Santas too, which he loved.”
Sadly, Xander passed away just a few days later on 7 January 2021 at home with his family at his side. The family had spent their last days and weeks together showering Xander with gifts including clothes, blankets and tasty treats. Elora spent time with a special playworker from the community nursing team who explained what would be happening to her brother. Jo tried to prepare herself by watching a video of another child who had passed away from a DIPG and her mother had allowed it to be filmed as her child’s brain was being donated for research.
The family plan to return to Woolacombe later this year to scatter some of Xander’s ashes on the beach he had happily run around on the year before. They are also setting up a memorial corner in the family garden and a memorial bench at Elora’s school. Elora’s dance school is also setting up a new music room which will be named ‘The Xander Suite’.
In the coming months, the family also hope to do some fundraising for The Brain Tumour Charity as they feel that research into the disease is hugely underfunded and new treatment options are desperately needed which requires action from the Government.
Jo said: “We had known for some time that Xander was on borrowed time and that the inevitable would happen. I thought I was as prepared as you can be, but of course, you are never ready to see that happen to your own child. I was also very shocked to hear about how little of cancer research funding goes on brain tumours. Children are still being treated with adult chemotherapy drugs which cause so much damage to them in the long term.
“It is my hope that, in time, more funding will be available and that greater research will eventually find kinder and more effective treatments to provide more hope for survival and less devastating and life-altering side-effects. This situation cannot go on as it is. I think all medical professionals need more awareness of the signs and symptoms of brain tumours. My doctor told me that most GPs may only ever diagnose one child with a brain tumour in their entire career. This is obviously why so many children get misdiagnosed before tumours are discovered. This desperately needs to change.”
Childhood Cancer Awareness Month was founded in 2010 by former US President Barack Obama. It is an international initiative where various charities and organisations, including The Brain Tumour Charity, aim to educate people on the impact this devastating disease has on young people and their families as well as raise funds to stop cancer from robbing so many people of their little loved ones.