Ethan is 16 years old and was diagnosed with an inoperable brain tumour in April 2008, when he was only five years old. Ethan’s mum, Clare, shares his journey...
The first thing I noticed with Ethan was the deterioration of his eyesight. He started to miss things that were right in front of him when he had tried to pick them up. Then he became very poorly. He would be struck with a headache, vomit, then sleep for a long time. We took him to the GP and he was diagnosed with migraines.
As his eyes worsened the left eye started to 'wobble'. I was very concerned and asked to be seen by the eye hospital. We got an appointment and that was when our nightmare began to unfold. The doctor wanted to refer Ethan for an MRI scan. I asked if we would get an appointment in the post, but he told us to go right away.
The first thing I noticed with Ethan was the deterioration of his eyesight. He started to miss things that were right in front of him when he had tried to pick them up. Then he became very poorly. He would be struck with a headache, vomit, then sleep for a long time. We took him to the GP and he was diagnosed with migraines.
As his eyes worsened the left eye started to 'wobble'. I was very concerned and asked to be seen by the eye hospital. We got an appointment and that was when our nightmare began to unfold. The doctor wanted to refer Ethan for an MRI scan. I asked if we would get an appointment in the post, but he told us to go right away.
Ethan was put on an emergency list for a scan and had to stay overnight for a slot in the morning. I couldn't make sense of what was happening and I was wholly unprepared for the news that would follow.
After the scan we sat in the recovery bay. As I held Ethan’s hand the doctors were already being informed that my son had a brain tumour and within an hour they were the words I would hear.
I will never forget the sheer panic, the crushing feeling in my chest and heartbreak in its most devastating form. I had my little boy sat on my knee who just wanted to go and play with his toy cars. We were told that the tumour was inoperable and that 18 months of chemotherapy lay ahead of us.
Within hours Ethan had an operation to fit a portocath in his chest and by 9pm that evening he had already received his first dose of chemotherapy. I sat by his side lost and broken. It still feels as foreign to me now that this all happened as it did nearly 11 years ago.
Ethan was very poorly for the whole of this treatment he was sick constantly, not a pinch of colour in his little face.
After the scan we sat in the recovery bay. As I held Ethan’s hand the doctors were already being informed that my son had a brain tumour and within an hour they were the words I would hear.
I will never forget the sheer panic, the crushing feeling in my chest and heartbreak in its most devastating form. I had my little boy sat on my knee who just wanted to go and play with his toy cars. We were told that the tumour was inoperable and that 18 months of chemotherapy lay ahead of us.
Within hours Ethan had an operation to fit a portocath in his chest and by 9pm that evening he had already received his first dose of chemotherapy. I sat by his side lost and broken. It still feels as foreign to me now that this all happened as it did nearly 11 years ago.
Ethan was very poorly for the whole of this treatment he was sick constantly, not a pinch of colour in his little face.
After 18 months of treatment the nightmare would be far from over. Ethan would go on to relapse not once, but a further four times! He has been on different chemotherapy drugs for most of his life. It's all he has ever known. It's the cruellest emotional rollercoaster in the world. He'd finish a gruelling 18-24 months of treatment, then we'd have an end of treatment celebration, only for it to come back. The last time he completed treatment was the first time we didn't celebrate. It's too hard when he's been let down so many times.
With each relapse more damage was done to Ethan’s vision and now he is registered severely sight impaired. Last summer he trained and got his wonderful Guide Dog, Chaz, who has given him back so much of his lost independence. He has so much to contend with but just takes it all in his stride.
Ethan is a happy positive young boy with strength and determination that is unparalleled to anything I have ever seen before. He recently sat his GCSEs, while on treatment! He had to take breaks to go and be sick but pushed through and achieved what he needed to get into college and do the three A-levels of his choice. He's incredible! He is my best friend and we have travelled this journey side by side. We love going to the theatre, gigs and sci-fi conventions together.
With each relapse more damage was done to Ethan’s vision and now he is registered severely sight impaired. Last summer he trained and got his wonderful Guide Dog, Chaz, who has given him back so much of his lost independence. He has so much to contend with but just takes it all in his stride.
Ethan is a happy positive young boy with strength and determination that is unparalleled to anything I have ever seen before. He recently sat his GCSEs, while on treatment! He had to take breaks to go and be sick but pushed through and achieved what he needed to get into college and do the three A-levels of his choice. He's incredible! He is my best friend and we have travelled this journey side by side. We love going to the theatre, gigs and sci-fi conventions together.
Dealing with this awful situation for so long as a single parent has been very difficult and taken it's toll financially. I've managed to get a job for a few months here and there but it can never last when Ethan relapses, it's just not feasible. Being a Mum to Ethan and him having my support is my priority in life. Financially I wish I could give him so much more, like he deserves.
When he relapses times are especially hard, but Lennox Children's Cancer Fund have always helped us. Every time I have contact with then they are so caring and supportive. As well as listening with a friendly ear, they have alleviated my financial pressures at a time when I really couldn't afford to worry about anything other than my precious child. They have always supported us and I know they will continue to do an amazing job. I couldn't be strong enough to face this next chapter without this much appreciated support.
Information correct at time of production: January 2020
When he relapses times are especially hard, but Lennox Children's Cancer Fund have always helped us. Every time I have contact with then they are so caring and supportive. As well as listening with a friendly ear, they have alleviated my financial pressures at a time when I really couldn't afford to worry about anything other than my precious child. They have always supported us and I know they will continue to do an amazing job. I couldn't be strong enough to face this next chapter without this much appreciated support.
Information correct at time of production: January 2020
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