John's Fund is a Special Named Fund at CCLG raising money to support research into children's cancers. John was seven years old when in April 2019 he was diagnosed with acute lymphoblastic leukaemia (ALL). His mum Helen shares his story.
Before his diagnosis, John had been unwell for about two weeks but it was difficult to know exactly why. He had an ear infection which became severe surprisingly quickly. He started antibiotics but his response was very slow and unconvincing and ultimately required a subsequent course. He also had a swollen tonsil on the same side as his ear infection.
I was worried by his feeble immune response to the infection as his symptoms of fever, pale skin and lack of energy, just wouldn’t subside – they were actually getting worse over time. In fact, his symptoms were becoming less specific yet he was becoming generally more unwell. He was still up and about, though… I tried to make a GP appointment but was told that the next available one was in four weeks’ time unless it was urgent.
He didn’t pick up over the next few days and I started to become concerned that there was something more serious behind his symptoms. I’m a doctor myself and I’d often laughed at how, every time my kids got ill, there would inevitably come a point where I’d question whether something sinister was going on; whether, in fact, they had, you know…leukaemia or something… and here I was again.
On the morning of the 8 April 2019 John had been feverish all night and was pale and lethargic as usual. He started to complain that his ear was hurting again. I called the GP surgery repeatedly but couldn’t get through. When I did, I was told that all the emergency appointments had been booked and I should either call again in the afternoon or queue outside the practice later that morning, which I couldn’t do with a sick child.
I knew what I wanted. I went to the Urgent Care Centre to get his bloods checked and also to see another doctor. I was driving myself mad. I needed a second opinion. In fact, they didn’t offer blood tests at the centre, but I stayed so that he could be seen by a doctor to get another clinical opinion. She was baffled too, but reassured me and repeated his antibiotics. His ear was a little inflamed, his tonsil was a little enlarged and he had some swollen and tender lymph nodes but nothing specific or acute.
John became more unwell over the next 24 hours with a high temperature.
The next morning, 9 April, his fever was very high, the skin on top of the swollen lymph node under his jaw had become red and for the first time, I had a good clinical argument for attending A&E, fearing that this may be an abscess. I didn’t care how improbable this was – I was just glad that I had a justifiable reason for taking John there.
In A&E, he was diagnosed with leukaemia and was transferred urgently to Addenbrooke’s hospital in Cambridge to begin a three-and-a-half-year treatment plan. John had a tough go of it from early on, as he didn’t respond to his induction chemotherapy and ended up being put on Regimen C, which is the highest intensity treatment. But he’s the toughest kid, and even when he’s been at his most poorly, he’s been running around and doing all sorts of things - he’s a full throttle kind of boy.
He has endured all the uncertainties, first of his illness and then, superimposed on top of that – the COVID pandemic! Despite this, his spirit has remained indomitable and he’s done really well throughout his treatment. He struggles with the steroids, but he’s got it in for leukaemia and reassures himself that however tough it is for him, it’s way tougher for the cancer. That gets him through generally. He likes to think that leukaemia is regretting ever having knocked on his door…
He used to enjoy rugby, but he can’t do that anymore, and really loved judo but he can’t do that either. The one big sport he could still do – football – he hates! So, his dad, Mason, and I looked for something else for him to enjoy; to take pride in and feel good about. His schoolteacher mentioned to us that he was good at singing and we recalled how, even at 18 months old, we noticed how songful he was. I remember videoing him singing something on CBeebies, really, really trying to get the right notes.
He hardly ever stops singing and really loves music, any kind of music. You can tell where he is in the house – you just follow the singing! We can ask him what he wants for breakfast and he’ll sing his response: “Toooast with Maaaarmite, pleeeeeeeease!!” His singing is an amazing boost to his mood and self-esteem and just before lockdown he started to take lessons online with his amazing teacher Phil Tebb.
Throughout everything, John’s little sister, Annie, has been the most incredible support to him. She’s been a real rock, though he wouldn’t admit it! They’re really close and it’s so sweet watching them together. Everything changed for Annie too, that day in April 2019. She was only just five and suddenly Easter was off and either mum or dad was away from home and for at least two weeks John was gone. She knew something serious was wrong with her brother and became very scared. We’ve become so aware of the impact on her and still people start a conversation with: “How is John?”. She never complains. Never. She just goes with the flow, responds to whatever comes her way and looks after her brother.
We think that we’re lucky, not only in that he’s got an illness that is curable, but also because of all the work that CCLG does and other charities as well. Throughout John’s journey, we’ve been supported by CCLG and its professional members, helping to find our way through.
We’ve found their information and factsheets really helpful, and they’ve been a dependable backbone of support. CCLG is the hub of everything, the research and where the minds and thinkers and doers in paediatric oncology are all meeting and talking.
One of the amazing things CCLG has done is the way they’ve helped families through the pandemic. With all this information coming from government issued advice for the public in general, CCLG and its panel of experts took the advice and collated it against what they know. Time and again, CCLG has provided evidence-based interpretations of the government’s COVID guidelines in respect to how families of children with cancer should respond. This has been so valuable to families like ours and hundreds of others.
It was a big comfort having their advice and setting up the fund is our way of giving back. John’s aware of how much CCLG has helped us and is very grateful to people for what they’ve done.
Recorded in December 2020, John sings 'Walking In The Air' for your donations before Annie reminds us of the impact of his treatment.
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You can make a donation or pay in funds raised by cheque, payable to CCLG, to CCLG, Century House, 24 De Montfort Street, Leicester LE1 7GB. Please ensure you make it clear that the donation is for John's Fund so that your donation is allocated to the correct fund.