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Mum of a dying boy, 3, forced to spend last days in isolation makes heartbreaking plea

Xander Deeley, from Solihull in the West Midlands, is classed as vulnerable because of his cancer so is in self-isolation with his mum, Jo, dad, Matt and big sister, Elora

By Jane Lavender Assistant Editor

12:45, 8 APR 2020Updated17:22, 8 APR 2020

Little Xander Deeley is battling a cancerous brain tumour and could now be spending his final days in lockdown because of the coronavirus pandemic.  The three-year-old's parents, Jo and Matt, and spending the time they have left with their little boy in self-isolation and are doing all they can to make as many memories as possible.  And Jo has made a desperate plea to other parents to make sure they cherish every moment with their children.  She also urged people to follow the lockdown rules and make sure they stayed at home while Britain is battered by COVID-19.  The 42-year-old said: "It does upset me when I see people moaning and groaning about being stuck indoors while the country is in lockdown.  So many people will come out of this and one day is able to return to their normal lives but that won’t be the case for us. My child isn’t likely to be here on the other side of all this.  I just want parents to realise how precious their children are. Yes, they can be testing, but being around them 24/7 while the schools are closed can also be a chance to make memories. We have to treasure every moment with our little ones.”

Speaking as Health Secretary Matt Hancock has warned that the country may face even tighter restrictions if Brits continue to flout social distancing rules, Jo asked the public to think of people like Xander when they go out.  She added: “To see people still going out, sunbathing and having picnics in parks, as nothing has happened, is upsetting.  I know it’s not everybody, but a handful of people still don’t seem to be taking this seriously.  I’m sick of hearing people saying that if they got the virus, they would be strong enough to fight it off. It isn’t about us as individuals.  We’re all in this together, and we need to think about the most vulnerable people like Xander and how to protect them.”

Jo, from Solihull, in the West Midlands, first noticed there was something wrong with her son in June last year when he said he felt dizzy and was vomiting.  She and dental technician husband Matt put it down to a simple ear infection so were devastated when they were told he had an aggressive brain tumour.   Xander has since had three major operations and intensive treatment - but his cancer has spread and cannot be cured.  Before he fell ill Xander had been a "perfectly healthy little boy".  Jo said: "He was in the nursery at the time, so I assumed he’d just picked something up as kids do. He would rally for a few days and seem fine, then go back to being poorly."

Then he started struggling with his balance, swaying to one side “as if he was drunk" and would screaming whenever his mum laid him down from a nap.  Jo was told it was probably an ear infection and prescribed antibiotics but when they had no impact she went back to her GP and even took Xander to A&E when his vomiting became especially bad.  Doctors still reassured her it was nothing serious.  Jo said: "Everybody just thought it was a particularly bad ear infection. I certainly don’t blame the doctors they did the best they could."

The worried mum started her own research online and found HeadSmart, a campaign by The Brain Tumour Charity aiming to reduce diagnosis times by highlighting the signs to watch out for.  Reading the list of symptoms on their website, her heart sank as she recognised several displayed by her little boy. Then she had to rush Xander to Birmingham's Heartlands Hospital when his vomiting returned and, this time, tests showed his blood sugar to be dangerously low.  Admitting him, doctors ran an MRI scan, which revealed a worrying mass in his brain breaking the news to Jo and Matt that Xander had a tumour.  She said: "I’d already prepared myself for the news, because of what I’d read online, but hearing it out loud was very different.  The mass was about the size of a golf ball - so large it was pushing the rest of his brain to the side.  I felt overwhelmingly guilty, guilty I hadn’t pushed more for a diagnosis and guilty that poor Xander must have been going through hell.”

Due to the size and precarious position of the tumour doctors knew they had to operate quickly, so transferred Xander to Birmingham Children’s Hospital, where he had surgery the following day.  During the 12-hour procedure, medics removed the bulk of the mass but had to leave some residue behind, as it had wrapped around his brain stem.  Jo, who works in insurance, said: "That basically controls everything the flow of messages from the brain to the rest of the body, and basic functions like breathing, swallowing and consciousness.  It was just too dangerous to operate near there, as one wrong move could have left Xander in a vegetative state for the rest of his life.  Seeing him come to was really frightening. I remember handing him his favourite toy and he started shaking it like he used to do back home.  Seeing that, I thought, ‘There’s still some of Xander left in there somewhere.’ I was just so relieved he was alive.”

After his operation, Xander remained in the hospital for three weeks recovering, with his parents taking turns to be by his side, while family members helped with his big sister, Elora.  Jo said: “We’ve always been completely honest with her. We just didn’t see the point in lying, in case something happened further down the line and we had to explain all over again.  I’m not sure she understands the severity of his condition, but she knows that Xander has a brain tumour.”

A biopsy on the tissue removed during surgery showed that Xander’s exact diagnosis was a grade three Anaplastic Ependymoma anaplastic meaning that the cells divide rapidly and are abnormal in their structure.  According to Cancer Research UK, just 30 children are diagnosed with ependymomas in Britain every year and the tumours usually develop in the cerebellum, at the back of the brain above the spinal cord.  Jo said: “Xander’s prognosis was never great, as he was fighting such a rare type of tumour.  We knew the survival rate would depend on how much surgeons could remove, and knowing they couldn’t get it all meant he would never make the age we’d wanted him to.”

In August last year, Xander had a second bout of surgery to try and remove more of the mass before beginning three months of chemotherapy.  Jo said: “Sadly the chemo didn’t work. The tumour actually grew while he was having it, despite us trying three different drugs.”

Chemotherapy was followed by a third operation to remove some of the regrowth in November 2019 this time lasting a mammoth 13 hours and a six-week course of radiotherapy, which he had every day at Birmingham's Queen Elizabeth Hospital.  Jo added: “The radiotherapy was more to make the cancer cells dormant so that we could buy some more time with him.  As chemotherapy had been ineffective, treatment became more about prolonging his life than curing him.  He went through so much. After one of his operations, his nerves were damaged, so he had to learn to swallow all over again. He absolutely loves eating and was so frustrated not to be able to.  Despite everything, though, he is such a happy, loving little boy. I’m not just saying this because I’m his mum. He truly is a joy.”

Xander’s radiotherapy finished in February and the plan was to conduct regular progress scans to check for regrowth.  But, just six weeks later in mid-March, a scan showed that the disease had spread and two new tumours had sprung up on his spine.  Jo said: "We knew it was bad when the hospital called us to say we had to come in person, despite the country locking down due to the coronavirus.  To be blunt, it was game over. They told us very gently that there was nothing else they could do. It was absolutely devastating.  Because the COVID-19 outbreak means things like clinical trials are on hold too, every last little bit of hope has been snatched away from us.”

Reeling, Jo had no choice but to take her little boy home and make the most of his remaining time.   His exact prognosis is unclear, as it will depend on how scans to
 monitor him go and whether or not he is able to have radiotherapy on the tumours on his spine.  To complicate matters further, as his immune system has been so compromised by his treatment, Xander is considered vulnerable, meaning he must remain in isolation for 12 weeks under Public Health England guidelines.  Jo said: “In a sense, it’s almost a relief that Matt and I can’t work at the moment because of the virus, as that means we can spend every single day with Xander and Elora, making memories as a family."

But the nationwide lockdown also means that special plans like a trip to Disneyworld or one last visit to CBeebies Land at Alton Towers are not going to be possible for the foreseeable future.  Jo said: “We’ve had to cancel a lot of plans. We can’t do simple things like take him to the park, or down to the beach in Devon, which we used to love doing as a family.  His immune system is too compromised. It’s too much of a risk. At the moment, we cannot even see other family members or friends it’s literally just the four of us at home.  If things do take a turn, though, we’ll obviously have decisions to make then about who can see him and how to make it happen.”

For now, the Deeleys are at home together making the most of every precious second.  By speaking out, Jo wants to both raise awareness of the symptoms of brain tumours in children and to thank the charity CLIC Sargent, who has been an unwavering source of support in her darkest hour.  The charity the UK’s leading one for children and young people with cancer has launched an emergency fundraising appeal to help families in crisis, struggling with the emotional and financial fallout of the coronavirus pandemic.  The appeal comes as they are dealing with a huge increase in demand for their social work support services, from anxious parents worried about their child’s risk of infection, families separated by isolation and those struggling both financially and practically.  Jo said: “CLIC Sargent has been there for us constantly. They check in with us and they aren’t just there for the cancer support.  They brought an overnight bag for us for the hospital and were there for us from the very start. CLIC Sargent has just been absolutely amazing anything you want or need, any information or even just to talk, they are always happy to provide it.  Our experience would have been very different without them. I want to thank them for everything they’ve done and for making our experience as good as it can be.”

The charity's Chief Executive Rachel Kirby-Rider is appealing for donations at this difficult time, as they endeavour to continue their vital work.  She said: “Cancer doesn’t stop for the coronavirus. The young cancer patients and families we support are facing a real crisis and need us more than ever.  We will continue to fight to be here for those families like Xander’s, but we urgently need funding to do that.”