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Blake was three years old when he was diagnosed with medulloblastoma – a brain tumour. His mum, Llian, tells their story below.
Llian has also produced a five-part podcast series about Blake’s medulloblastoma story, which you can listen to here.
Support children like Blake so that they have a future they deserve.
Our little boy was a healthy, happy three-year-old until September 2013. Our lives then changed forever.
Blake wasn’t well – his symptoms included severe night-time headaches, spontaneous vomiting, tiredness, strange eye movements and a stiff neck and back. We had numerous visits to our GP and were told he had a virus – or that he was attention-seeking.
As Blake’s parents, we knew it was something more serious. We did some research and his symptoms seemed to point to a brain tumour.
We demanded an MRI scan and, after much convincing, Blake got his scan. After an agonising three and a half hours we were taken to a room – the doctors said they had some concerns. Straight away we knew.
The oncologist explained they had found a tumour in Blake’s brain. He needed to be transferred from Poole to Southampton for emergency surgical debulking of his tumour.
A further MRI in Southampton showed the tumour had spread down his entire spine, encasing the spinal cord. Our lives just stopped. Blake had a two-year-old sister and another on the way. We were told Blake only had a few weeks to live.
The cancer was a Stage 3 Medulloblastoma – a very aggressive, fast-growing cancer. Four days after the operation we noticed he wasn’t moving his legs. Blake was paralysed from the chest down.
We had to make the decision to consent to high dose chemo 72 hours after the surgical debulking. It would normally be given three weeks after the operation. We were told this had never been done before and that it may kill him. We consented.
The months that followed involved more chemo and four months with Blake being in intensive care on breathing machines, being intubated and then undergoing a tracheostomy to help him breathe because of his paralysis. We nearly lost Blake a couple of times, but our persistence and Blake’s zest for life and to live just shone through. We made it home for short periods, which was amazing.
We were advised not to go ahead with the six-week radiotherapy which was on the protocol, as the oncologist said Blake had a high chance of not making it through. Again, we pushed for him to have it. Blake had to have a general anaesthetic five days a week for six weeks. He survived it, and it didn’t even faze him.
Although his MRI scans have been very good, the type of cancer he has is predicted to return aggressively. The oncologists hold little hope for Blake’s life expectancy.
We are more optimistic – Blake is the most amazingly strong, beautiful little boy, and he will beat this!
Llian, January 2015
Blake has now had disease stability for nearly a year and a half.
He is enjoying school and time with his friends and family – especially his new eight-week-old brother.
Blake is fighting this with all he’s got – a true amazing superhero!
Llian, November 2015
Blake had to cope with a lot of changes: being in a wheelchair, losing his hair, being in hospital, having a tracheostomy and catheter and feeding tube as well as a central Hickman line to administer the chemo.
Regular MRI scans showed that the radiotherapy and chemo were working and that he had defied all the odds. The disease was shrinking and by June 2014 we thought he might be in remission. Blake even started school in September 2014, while still receiving maintenance chemotherapy.
It has made me look at life in a new light, to appreciate what I have and take each day as it comes. I know too well that anything can happen around the next corner.
Llian, November 2015
Blake is doing incredibly well in every aspect of his life and learning to make the most of life with his disabilities. Blake has what cancer doctors call ‘stable disease’ (so he wasn’t in remission as we had thought) and goes for regular MRI scans. He is a true hero!
Llian, Blake’s mum, January 2017
Blake still has disease stability. The long-term side effects of radiotherapy and treatment are becoming more apparent now. He has been very brave and mature coping with his daily struggles. We are immensely proud of Blake.
Llian, Blake’s mum, February 2018
Blake is now 10 years-old and still disease stable. The older Blake gets, the more apparent the long-term effects of treatment are. They impact his daily life making it a struggle at times.
Blake is immobile and has gained weight so is very difficult to lift. His scoliosis has got significantly worse. His spine is so deformed he sits to one side. The spine has also forced his pelvis down on one side so one leg is now longer.
We were offered hormone treatment, however, we made the decision not to have it as we have heard from other families it can make the cancer grow. There are many health issues caused by the hormone treatment which worried us. A result of not having the treatment means Blake won’t grow anymore. His hands and feet stopped growing three years ago.
Mentally Blake’s stutter can be bad, his memory is poor and academically struggles to learn. Blake’s behaviour and frustration can vary. As Blake is older he is also struggling with being paralysed and compares himself to his able bodied peers which upsets him.
Despite all of this, Blake’s funny personality and smile always shines through!
It has been a challenging time for Blake and us as a family in lockdown due to the coronavirus pandemic. Blake has missed a lot of appointments over the past 10 months resulting in his health suffering. Blake is awaiting surgery on his spine to correct his scoliosis.
He has only been in school part-time over the past three months due to health problems. Blake’s mental health and physical health has declined however he is a resilient boy and I’m sure in the months to come he will be back on top.
Yes certainly, 2020 has been such an awful year and can’t imagine what it’s like to be fighting cancer in hospitals in the current circumstances. So sad.
If you’ve been touched by Blake’s brain cancer survival story, help us invest in the high-quality research that really matters which would otherwise go unfunded, and you could help more children survive medulloblastoma.
This helps to support children with cancer so they can be with their families for longer.
Many of our supporters have been affected by childhood cancer – either through family, friends or their own personal experience. These patient stories can help inspire others to get involved with us, or can support our media work.
If you have a story that you would like to tell, .
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