Varden Callaghan, of Bromley, London, was just four years old when he was diagnosed with a pilocytic astrocytoma in April 2022. He had been blinking excessively, rubbing his eyes and getting irritable since about eight months old and had been misdiagnosed with a range of ailments, including sinus problems and blocked tear ducts. As he got older, his symptoms worsened until he became unsteady on his feet and regressed to wetting the bed. The youngster underwent surgery and is now being monitored with regular scans.
Here is Varden’s story, as told by his mum Lisa …
Varden is my third of four children and was more poorly than the others, even as a baby. I just assumed he was picking things up from his siblings. When he was about eight months old, in June 2018, we started to notice him blinking a lot. He would stare and look like he’d ‘zoned out’ or he’d blink excessively.
“He’d also rub his eyes and sometimes he’d get irritable, which was out of character for such an easy-going child.”
The doctors thought Varden’s symptoms were linked to his sinuses, then to general illness and then to blocked tear ducts. Knowing what I do now, I suspect he was just getting minor headaches. Varden was due to have an operation to unblock his tear ducts but we cancelled it a few days before as we weren’t convinced that was the problem. Overall, he was a happy, cheerful child and wasn’t getting too distressed, so we decided to wait until we were sure.
Unfortunately, his blinking slowly got worse, especially when he was tired or getting a bug. I suspected he could have epilepsy and took him back and forth to the doctors. We did get referrals but, being non-urgent, they took a long time to come through. Varden had multiple visits to the eye clinic at the Princess Royal University Hospital (PRUH), in Bromley, and lots of blood tests to check for infections and allergies. He was also referred to a paediatrician at Queen Mary's Hospital, in Sidcup, but no one was too concerned.
“They said Varden was happy and healthy and likely had a tic, although they also said tics don’t usually start before the age of five.”
After a couple of years of doctors’ visits and antibiotics for eye infections, as Varden was approaching school age, we decided we’d try and figure out what was going on with him once and for all. His blinking and eye rubbing wasn’t affecting his day-to-day life, but it was noticeable. This is when we decided to go private, choosing a doctor who specialised in allergies and epilepsy. Varden had blood tests and a sleep electroencephalogram (EEG) to record his brain activity. These all came back clear but, with epilepsy, an EEG won’t show anything abnormal unless an episode occurs during the monitoring period. We discussed extending this from 45 minutes to 24 hours, but Varden was still so young that we decided to wait another six months before determining if a longer EEG was necessary.
“We went on holiday to Ireland around Easter 2022 and realised Varden was starting to lose his balance when he blinked.”
He’d be doing something and stop still as if trying to steady himself. He also started wetting the bed again, despite being fully potty-trained since the age of two. The regression was so severe there were periods he’d wet the bed every single night. We even ended up having to put nappies on him again, which he was really upset about. I booked an urgent appointment with a private doctor for our return and asked if we could have an MRI. The doctor said he’d book one to put my mind at ease but only if Varden could stay awake during the scan. Despite him being just four at the time, I agreed.
“He had it in May 2022 and less than 48 hours later, as I was getting ready to do the school run, I received a call about a large mass found on his brain.”
The doctor said he would ring around to see which hospital could fit us in but told me to clear my schedule for an urgent appointment. He sounded really worried, so, of course, I thought the worst possible thing. My sister-in-law is a doctor so I called her and proceeded to drop the kids at school.
A few hours later, we were sat in front of a doctor at King’s College Hospital, London, Varden dressed as a king having come from The Queen’s Platinum Jubilee party at school. The doctor told us Varden’s tumour was in his cerebellum and, from the shape of it, he wasn’t concerned about it being particularly aggressive. He advised that we got him an MRI scan with contrast to see if the tumour had a blood supply and was growing.
“He was confident it wasn’t cancerous but, at 3cm wide, it was rather large and would have to come out at some point.”
We transferred to Great Ormond Street Hospital (GOSH) the following week after Varden’s scan confirmed his tumour was growing. There we were given two options, monitor Varden for three months to get a better understanding of the rate of tumour growth or have surgery to take it straight out. Our initial reaction was to have it removed as quickly as possible but when we saw the list of risks we questioned if surgery was the right thing to do. It was a difficult decision and we decided to wait. The truth is we probably needed that time to process everything fully.
Varden’s follow-up scan three months later didn’t show any growth, but at this point we were told the tumour was already too large to remain and we were advised to have surgery. The doctors didn’t want to wait for it to get bigger because that would make removal more difficult. Besides, we were told Varden would recover more easily whilst he was young. The op went ahead at the end of the 2022 October half-term. Varden was in theatre for over 10 hours. After his surgeons thought they were done, they carried out an in-theatre MRI and went back in to remove more, ensuring they got all of his grade 1 astrocytoma.
“Varden’s bed-wetting stopped straight away but it was a few days before he was able to get out of bed and several more before he could start walking.”
He was in hospital for a couple of weeks and had to relearn how to walk but was relatively steady, eating well and gaining strength after about a week. We were so relieved he didn’t have any of the terrible side-effects we had read about and incredibly grateful for the amazing care he had received, which allowed him to do a phased return to school from December. He was getting scans every three months but at his last one in October 2023, these were moved to every six months.
“Although Varden’s blinking stopped after surgery, it did gradually start again.”
We panicked and were sent for a few urgent MRIs but, thankfully, everything was fine. The doctors think his blinking has developed into a tic as a way of dealing with stress and anxiety. Varden did it for so long that it’s become his way of coping, but it does look a little different now. Before, it involved his eyes and the top of his head but now it involves his mouth, neck and vocal tics in the form of clearing his throat. We’ve been told its Tourette’s syndrome and are waiting for a referral to the Evelyn Children’s Centre, in Lewisham, but that’s likely to take more than a year. We’re told he should grow out of it or learn coping mechanisms to manage it so, as it isn’t life-threatening, for now we’re not overly concerned.
“It’s such a relief to know that the worst is over.”
Varden is now six and although his tumour was slow-growing, we’ve been told it could come back. However, if it does, it will be the same type of tumour and is unlikely to grow past his adolescent years. Varden will continue to be monitored and if another surgery becomes necessary then we’ll deal with that then.
“We recognise how fortunate we have been and know many children do not have the positive outcome Varden has had.”
To help raise money for others affected by the disease, I will be taking part in London’s Santa in the City with six work colleagues, some of whom have also been affected by brain tumours, on 7 December. This 4km festive run will see us dress up in five-piece Santa suits and set off through the city, passing landmarks like the Tate Modern, London Eye and St Paul’s Cathedral. Anyone who would like to support us with donations can do so at: www.justgiving.com/page/lisa-callaghan-1700487005003.
Lisa Callaghan
November 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 Varden’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
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