Xander’s Story – Making precious memories and living with cancer in lockdown

Xander, 3, from Solihull, was diagnosed with a Grade III Anaplastic Ependymoma in July 2019. His parents first suspected a brain tumour after matching Xander’s symptoms to HeadSmart’s symptom card. Sadly after multiple surgeries and treatment for the brain tumour, the family have been told to make what memories they can together.

Hoping to take Xander to Disney World Florida and to CBeebies Land at Alton Towers to make lasting memories, the family have tragically had to cancel all their plans and are now trying to do what they can to create memories at home together in isolation. The family can’t even take Xander, who loves to be outside, to his favourite playgrounds because of the risk of the virus to him and the UK-wide lockdown.

Since his diagnosis, Xander, who has non-verbal autism, has faced multiple brain surgeries to remove the tumour, a clinical trial, chemotherapy, and radiotherapy to try and treat his cancer.

Mum Jo said: “Xander has taken everything that has been thrown at him with a smile. Because of his autism he is non-verbal and not really aware of what is going on, but he high fives the nurses when he’s happy and content. He is such a happy little boy.”

“We had Xander’s six-week progress scan last Saturday and we were called into Birmingham Children’s Hospital. We just knew it was going to be bad news because of the doctors asking us to go into the hospital to talk, even during the coronavirus outbreak. They told us that the piece of tumour in Xander’s head was still there and also two new tumours have appeared on his spine. The cancer has spread down through his spinal fluid and the doctors can’t operate on it. Chemo is ineffective and so they won’t be giving him chemo. They have suggested a very low dose of radiation to slow things.

“This is all devastating enough in itself, but to be told this news whilst on coronavirus lockdown is truly horrifying. We’ve been told to make memories with our precious boy, but how can we when we are stuck in the house? Our Disney trip has already been cancelled, we cannot see friends and family for possibly months, and we cannot take him to any of his favourite places, swimming or the park.

“I just feel angry – the situation the world is in and this has happened and there’s nothing we can do for him. We are just taking comfort in the fact that being isolated, we are all together 24/7 and getting to spend quality time with one another.

“All the adverts you see on TV about cancer destroying and tearing your life apart are true. It’s a darkness that feels like there is no end in sight. The oncologist hasn’t given us an answer as to how long we have left with Xander, they can’t be definitive, but we don’t think he will see Christmas.”

The family were advised to self-isolate for 12 weeks and have so far been on lockdown for two weeks.

Jo said: “It’s hard because we are terrified to leave our house even to get food because if he gets poorly we will miss out on time with Xander. It’s been really difficult, it’s just that fear all the time, and if we were to give coronavirus to him. We have got family dropping off food, and got one food delivery slot 10 days after we first ordered. My husband pops out to get milk and bread but we try to minimise that as much as we can.”

Throughout the family’s cancer journey, they’ve been supported by CLIC Sargent, the UK’s leading cancer charity for children and young people with cancer.

“CLIC Sargent have been there for us constantly. They check in with us and they aren’t just there for the cancer support. They brought us an overnight bag for us for hospital and were there for us from the very start and gave us a grant too. CLIC Sargent have just been absolutely amazing – anything you want or need – any information or even just to talk, they are always there for you.

“Without CLIC Sargent’s support, our experience would have been very, very different. We would have been trying to figure out so much on our own. I’d just like to thank CLIC Sargent for everything they’ve done, just made everything as good as it can be.”