Callum, the youngest of two siblings, was diagnosed with a grade 4 diffuse midline glioma (often known as a DIPG) aged 13-and-a-half. He passed away 20 months later with his parents at his side.
Here is Callum’s story, as told by his mother, Michelle …
Callum was the youngest of our two children – with an older sister, Abigail. He was funny, smiley and sensitive and absolutely loved his family and we loved him. Before his diagnosis, at the age of 13, he’d always make sure to be home before I returned home from work so we could catch up on our days. He was a good boy and never gave us any issues either at school or at home. Callum could be stubborn, but I think that stood him in good stead when he became ill.
He wasn’t particularly into sports, preferring playing on his Xbox or reading, but Callum enjoyed going to watch Norwich City – after his diagnosis he was given free tickets a number of times and was invited to the training ground to meet the players, as well as to be a match mascot.
Callum had always been healthy until leading up to Christmas 2018 when he became poorly, suffering with headaches and being sick. We thought he had a tummy bug and then he seemed to perk up on Christmas Eve. The previous day, he’d complained about double vision so we’d taken him to A&E where they’d diagnosed dehydration and suggested the over-the-counter medication Dioralyte should sort him out.
We were watching the film Nativity (a film I’ve never been able to watch since), when Callum complained that his leg felt dead. My husband Ian helped him to the toilet, but then he started talking strangely and saying his tongue was swollen. We called 999, worried that he was having a stroke as my brother had had one the previous Christmas.
Ian went with Callum in the ambulance while I followed in the car. At Norwich and Norfolk University Hospital, Callum was talking normally, but he didn’t know who we were. After he had a CT scan, Ian and I were taken into a side room where there were two cups of water and a box of tissues – we knew that wasn’t a good sign.
“We were told that they’d found a brain tumour. It was terrifying because I’d lost an uncle to one a couple of years previously. I remember feeling completely numb.”
I recall getting into a taxi as the hospital staff would not allow me to drive home. Ian stayed with Callum as he was transferred to Addenbrooke’s. I felt desperate to get home to Abi.
After an MRI scan at Addenbrooke’s, we could see that the tumour was not a neat ball, but an amorphous shape which seemed to spread all over the place (I knew that irregular-shaped moles on the skin were never a good sign). The medics told us they were waiting to operate. I immediately thought I might never see him again.
In the event, Callum was taken to HDU where he was watched over 100% of the time by a nurse. We were given a room in Acorn House where there was a shared kitchen available. Callum didn’t wake until around 2.30pm on Christmas Day and his first thought was he’d missed Christmas dinner round at Uncle Andrew’s house. Incredibly, however, the nurses were able to give him presents suitable for a boy his age – obviously generous donations.
On Boxing Day, Callum, who had been put on the anti-seizure medication Keppra and dexamethasone, was well enough to be transferred to the oncology ward. His medical team had changed the course of action to wait and see how he responded to medication with the plan to operate on 28 December.
Having been told that Callum’s tumour was like soil being thrown into sand –scattered all over the place, rather than like a cherry in bowl of custard – I really felt we had a massive fight ahead.
Callum was the first into the operating theatre on the Friday morning and he got quite emotional when he was being put under. Ian and I were given a pager and went off into Cambridge to have breakfast and do some shopping to try to take our minds off what was happening to our son. When the beep went off, we ran to the hospital, not knowing what to expect. Callum was out of surgery and, amazingly, he knew who I was.
The surgeon advised us he hoped to remove between 40% and 60% of the tumour. We still didn’t know what kind of tumour he had, but I already had in my head that if this was a fight Callum couldn’t win, I didn’t want him to be fighting.
On New Year’s Eve, the medical team’s consultants met with us and while his surgeon said he had removed what he had hoped to, the oncology consultant told us that Callum couldn’t survive this. He might live a couple of years, but not 10.
Amazingly, a couple of days later, Callum was discharged, armed with loads of meds. It was so good to be back and we just focused on having Callum home.
“On 7 January, we were given the devastating news that Callum had a diffuse midline glioma, often called a DIPG, and that without treatment he had a survival prognosis of four months and with radiotherapy, nine to 12 months.”
My reaction was: “What’s the point?”, but the oncology consultant told us he’d choose treatment. It all seemed unreal with Callum seeming pretty well, although he seemed younger somehow. Ian’s reaction was: “We’ve got to give it a try”.
The medical team respected me when I said I didn’t want Callum to know his prognosis, but emphasised that they wouldn’t lie to him either. I didn’t want Callum to have to deal with the fact that he was going to die.
In the event, Callum was so strong. He didn’t ever question anything, even when he had a bad headache, he was always strong. In the last few days of his life, when Ian was feeding him custard, Callum got scared. Ian told him he could talk to us about anything, but he never did. I wonder whether it was Callum’s way of protecting us?
Later in January, Callum was fitted with a mask ready for radiotherapy, never making any complaint. The woman responsible for his mask decorated it in the Norwich City colours of yellow and green.
Callum endured 13 days of radiotherapy bolted to a table. The treatment only took a couple of minutes, but whichever parent was with him had to leave the room. Callum lost his hair around his ears, but fortunately it was very symmetrical and one friend actually thought he had a new hairstyle!
We’d booked a summer holiday to Majorca, which we cancelled and asked Callum where he wanted to go, telling him a white lie that he wasn’t allowed to fly. He chose Blackpool, so we went off there to have a fun-filled few days including visiting the Blackpool Tower Dungeon – an immersive experience where I got picked on, making Callum really giggle. We also enjoyed time at the Pleasure Beach where Callum had £10 to spend from his godmother and after going on the Wallace and Gromit ride, said: “I’ll buy you that teddy Mum, if you can buy me that Gromit”.
On the way home we stopped off in the Peak District to go to the Heights of Abraham.
We were very lucky that the paramedics who responded to our 999 call back in December, knew Tristan at Finnbar’s Force (a Member Charity of Brain Tumour Research), who was very kind and through the charity helped us with travel expenses and experiences for Callum. Tristan also contacted Make A Wish UK on our behalf who helped get us to Disneyland Paris with Callum in March. This included the four of us (including daughter Abi who was then in sixth form) being flown there and back, being put up in a hotel for two nights, being treated to a Rodeo show one night as well as evening meals on both days in the park and even spending money for Callum.
We never sent Callum back to school, although sometimes we’d ask him if he wanted to see his friends at lunchtime.
We were humbled by people taking it upon themselves to raise funds for us – even total strangers – including The Bodycentre Ltd in Norwich who put on a car wash and had a doughnut and a coffee stall, which helped pay for another holiday with Callum. Meanwhile a friend did a midnight walk to raise funds, not just for Callum, but for Finnbar’s Force too. Another friend ran the London Marathon with very little training.
“You expect family and close friends to step in with support, but the kindness of so many people in the wider community helped us make memories with Callum.”
He particularly enjoyed the opportunity to go to a variety of musicals in London, including The Lion King and Aladdin.
I had been signed off work while Ian’s employer was very supportive. They allowed him to work from 6am to 2pm, giving him the necessary time off to go to hospital appointments and even helped with buying a reliable car to get us to and from those appointments.
We took Callum to the zoo and the seaside, or he hung out with me and my friends as we went for a coffee or out to lunch.
In the autumn of 2019, Callum started having symptoms again and another scan revealed a tumour in the medulla, so coming up to 2020, Callum underwent further radiotherapy.
Once the COVID-19 pandemic hit, Norwich & Norfolk University Hospital told us to isolate Callum, but we thought this was rather ridiculous seeing that he was on borrowed time anyway. Ian was furloughed for three months which was great as it meant he had more time to spend with Callum. We were careful about going shopping, but one of us would go, while the other stayed with Callum.
When COVID restrictions eased slightly, we took him to the beach and to McDonalds among other places he loved to go, while being careful to stay away from people as much as we could.
Callum could have had another scan, but we didn’t see the point. He was losing the use of his right arm and in fact his whole right side, having seizures and finding it hard to move around the house. Added to that the bathroom was upstairs. We didn’t want him to have to undergo further treatment.
“It was tough watching Callum decline, but he didn’t want more treatments and we felt that his quality of life far outstripped quantity.”
During lockdown, we also visited The Nook – one of East Anglia’s Children’s Hospices (EACH) where Callum enjoyed a craft activities, music therapy and more.
“Callum celebrated his 15th birthday on 19 July 2020. By then he was mostly confined to a wheelchair, compared to when the COVID lockdown first started just four months previously and he could still walk three miles.”
A week after his birthday, Callum had a big seizure from which he didn’t really recover. The next day we were at The Nook and they asked Callum if he’d like to stay there. We went home to collect his things and he spent 10 days there and after that he returned every other day to spend time there.
One day he was leaning on me in the car while travelling to The Nook and he didn’t seem to be able to support himself. When we arrived, his arm started waving up and down, although he was slumped in his wheelchair. We realised he was having another seizure. Luckily, one of Callum’s nurses, Pete was on hand. I was really scared – probably the most scared I ever was. Callum too was very scared.
We got him into bed at The Nook and he never came home. The staff went above and beyond and created a home away from home. Despite the pandemic, he was still allowed a couple of visitors.
A week after Callum was readmitted, I went out running early in the morning, thinking I’d do breakfast when I got back. Callum had asked Jo for some juice, but was asleep when she got back with it. Then he had a big full-on seizure. I was holding Callum’s hand and texting Ian. A nurse asked me whether Abi, who was 17 then and had decided she’d prefer to hold the fort at home while looking after the cat, was coming up too. A friend brought Abi to us and Ian dashed back to work.
Our wedding anniversary was coming up (and it was just two days before Ian’s 50th birthday) and Abi and Callum had colluded to make a canvas of family photos. She brought this with her and she believes Callum opened his eyes and saw it.
Callum was fitted with a nasogastric (NG) tube to carry medicine to his stomach – he fought having it inserted. Meanwhile we were given a big platter of sandwiches and Callum seemed stable again.
At 9pm we went to bed, but just after midnight we were called through to Callum. He died at around 1.05am on Thursday 20 August 2020.
Because of COVID, Callum’s funeral was limited to 30 people, but the streets from our home and the church were lined with people, some following us to the church and encouraging others to applaud. It was an amazing and humbling sight and those inside the church could hear when we arrived with Callum due to the noise.
“We don’t want others to go through what we have, which is why we’re supporting Brain Tumour Research’s petition for increased investment into research. The treatment for childhood cancers is barbaric and too often ineffective. Nothing has really changed since Neil Armstrong’s daughter Karen died aged two and a half from a DIPG in 1962 and the treatment then was radiotherapy.”
Added to that, radiotherapy is not a kind treatment, especially for children whose brain is developing as it doesn’t just attack the tumour but also damages healthy tissue, leading to long-term side effects, assuming the child lives long enough.
Michelle Doe
October 2023
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 since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been touched by Callum’s story, you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy .Together we will find a cure.