In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
Oxfordshire toddler, Callum Elliott was just 20 months when he was diagnosed with an anaplastic ependymoma after a family member noticed a constant tilt of his head. After initially being given medication for wry neck, concerned mum, Zoe Elliott, re-visited the doctors and was referred to the John Radcliffe Hospital where further tests revealed the devastating news of a tumour on Callum’s brain. He had three operations, encountering complications during his diagnosis including a tracheostomy, and recovering from meningitis, staphylococcus aureus and sepsis. After undergoing only five out of 35 rounds of gruelling chemotherapy, and radiotherapy treatment, Callum’s tumour became too aggressive and he died on 9 January 2017, aged four, in a hospice with Zoe by his side
Here is Callum’s story, as told by his mother, Zoe…
Losing Callum has completely changed my outlook on life. I used to get worked up about things that seem so trivial now. Callum brought such joy to people’s lives and like any other little boy he was full of smiles and so happy. That’s something that has carried me through my day-to-day life – living for him.
In August 2013 we had just got back from a family holiday, and my sister asked what had happened to Callum as he was tilting his head to one side. I thought he might have slept on it a bit funny and thought nothing more of it. Over the next four or five days I had more comments from people asking why Callum’s head was leaning to one side so I decided to get it checked with my GP. They gave Callum painkillers and said he was suffering from wry neck and to monitor his recovery.
It was strange because he didn’t seem like he was in pain and when I put him in his bed, he could straighten his neck. I went back to the GP who said they would phone the John Radcliffe Hospital (JR) who asked us to go in for tests.
There was no explanation as to why and I thought it was a bit excessive – Callum having a brain tumour had not crossed my mind at any point.
“I was on my own when I was given the results of the MRI scan and was told Callum had a brain tumour. As soon as I heard those two words my body went numb and I couldn’t concentrate on anything else from the conversation.”
I called my mum who was devastated, she had thought he may have had a problem with his eye – not that her grandson had a mass growing on his brain.
All I knew is that the tumour was on his brain stem and he would need surgery to try and remove it safely. In mid-September Callum had his first surgery at the JR. Due to the location, surgeons couldn’t remove it all and part of the tumour was left on his brain stem. Callum lost so much blood that he needed multiple blood transfusions and spent three weeks in intensive care. I wasn’t allowed to stay with him for long periods of time and he had to have a tube to help him breathe, it was so hard to see your baby going through this.
Doctors tried to remove the tube but Callum couldn’t breathe on his own and he was fitted with a tracheostomy. I hadn’t even heard of a tracheostomy before then. The trauma of the operation and the brain tumour led to Callum having anoxic seizures where he would stop breathing and turn blue, eventually taking a breath and coming round in a panic and very upset – this could happen 20 times in one day.
Over time, I figured out his triggers and was able to manage this on my own.
Before his diagnosis, Callum was like any other toddler, walking around, eating and chatting, but the tumour wiped him of all these things and with the help of physio he learnt to walk again holding someone’s hand.
From September 2013 to April 2014 Callum was in hospital, eventually moving to a ward and he was diagnosed with a grade 3 anaplastic ependymoma. I didn’t want to know the likely outcome. You assume because your child is in the hospital they are going to be saved, you can’t think any other way.
The doctor told me the treatment options for Callum and said he would need 35 rounds of chemotherapy and because he was young, his body could cope with this type of treatment. He had five rounds of chemo, which lasted a week each time and for those five weeks I had to watch my son go through gruelling treatment which carried its own side effects.
“I had to wear gloves to change his nappy because the chemo was so toxic it would seep through his pores.”
The skin around his nappy and in his mouth appeared burnt and sore. Seeing your child go through surgery was bad enough, you then just want them to be out of pain.
Treatment options felt very restricted.
Callum’s scar and bone flap became infected, he contracted a form of meningitis and a version of MRSA (the non-resistant type) called staphylococcus aureus and for six weeks he was placed in isolation whilst doctors ran further tests to assess the next step for his brain tumour treatment.
After everything he had been through, the infections and horrendous chemotherapy, a scan in March 2014 showed the tumour had grown rather than shrunk. Fortunately, during a second operation, surgeons removed almost all of the tumour and Callum had six weeks of radiotherapy to kill off any remain cells, all of this happened after he recovered from sepsis.
Even the doctors commented that Callum gave them all of these hurdles.
The days felt like weeks.
During his radiotherapy he was transported by paramedics from the JR to Churchill Hospital, because he had suffered with so many complications, doctors didn’t know how he would respond to radiotherapy and wanted to be as prepared as they could.
Callum was accepted for proton therapy in America, which at the time wasn’t available in the UK but it was too much of a risk for him to travel due to all of the complications he had faced so far.
He needed care 24/7 and between me and family, including my mum and sister, we all learnt how to care for someone with a tracheostomy. I needed to do something for myself and decided to volunteer at a local charity shop and my sister looked after Callum. It was only for a few hours a week but it was the space I needed to be able to care for Callum.
Every time the MRI scan came back stable it was such a relief.
Before Christmas 2015, Callum had a third surgery after getting hydrocephalus which is the build-up of fluid on the brain and he was fitted with a shunt to help relive this pressure.
“I remember a parent telling me their sick child had said to them ‘I don’t want you to be my nurse anymore, I want you to be my mum’ and that stuck with me.”
From the day of his first surgery, over the two years, Callum was fed through a tube and with his treatment we were constantly in and out of hospital, it became less about the quality of life and more about keeping him for longer which didn’t seem fair and I made the difficult decision to stop all treatment.
I knew that no amount of treatment would save him and it came down to enjoying the time that we had together and making new memories. I wanted him to experience things that he hadn’t before like going to the beach, being in water and going on a steam train – he loved trains.
Callum died 9 January 2017 at Helen & Douglas House Hospice in Oxford, days before his fifth birthday.
You always think about the ‘what ifs’ and question if you could have done more and although Callum is no longer with us, he has helped me in difficult situations and he is the reason I am campaigning and fundraising for Brain Tumour Research, to help put an end to the devastation caused by this deadly disease.
In June I am taking part in the Yorkshire three peaks challenge with my mum Jenny and sister Katie. This will test me physically and mentally and allow me to think and talk about Callum which I know will get me through times where it feels tough.
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