Here’s Lennie on January 31, 2012, at 9 months.
He’d been out of sorts for a few days. By this time we were worried, particularly about his sight – he didn’t seem to be responding to visual cues.
The next day we went to the nurse at Center Parcs. She shone a light in his eyes, and then was very calm, kind and firm – ‘I’m not getting any reaction, you need to go to hospital’. She phoned West Suffolk hospital and prepared the way for us. She was brilliant. In fact, she’s on the long list of people who have saved Lennie’s life – I only wish I remembered her name. Everything happened very quickly after that. We were surrounded by doctors, moved through the system very quickly, met a lovely paediatric consultant called Catherine (easier name to remember), he had a CT scan, they told us he had a tumour, Catherine spent the whole afternoon on the phone to GOSH begging them to take us, and that evening we went by ambulance to the high dependency unit in the neurology and neurosurgery ward. At that point we didn’t know what that meant. We just knew that he had a tumour, had temporarily lost his sight, and needed an MRI scan. We were scared by the machines and wires and beeping surrounding our tiny boy, and didn’t sleep.
We don’t have any photos of Lennie from 1 February 2012. Just a couple of Zoe at Center Parcs – Ed stayed there with her for a few extra hours, to give her the chance to enjoy the holiday before we had to cut it short. He didn’t say ‘Zoe, please could you stare into the middle distance wistfully so that we can share this photo in 5 years?’ But he may as well have done.
Lennie was diagnosed with a rare bone cancer in his skull a few days later. Here he is on 4 February 2012.
And here he is in December, back at home after a gruelling 10 months of treatment which battered his poor body nearly to breaking point – but it worked.
Since then, we have all been adjusting to life post-2012. A great deal has changed.
Lennie has experienced a litany of side effects which will be with him for life – and of course his sight loss is permanent. We have all become very hospital-literate. We’re off for another MRI scan tomorrow morning at GOSH – we’ll saunter in and be greeted like long lost friends. It’s hard to remember how alien it seemed when we first arrived five years ago (and how easy it was to get lost in the corridor warren).
Ed and I have separated – or as Zoe puts it (ever the optimist) ‘I have two houses now’. It’s hard at times, but we’re making it work.
Zoe is a grown up, wise, funny 9 year old, who constantly amazes us – and still takes a good wistful photo.
And Lennie is 5. He’s strong, healthy, independent, hilarious, and drives everyone up the wall on a daily basis. He can get himself about the house and school, use a cane, go to the toilet, run himself a bath, stack the dishwasher (badly), play the piano, recite entire episodes of Peppa Pig with the voices – and makes more noise and mess than the rest of us combined. We’re struggling with his behaviour and with supporting him to learn and develop – he’s got lots of complex needs and we don’t always get it right. But (and this is the thing that hasn’t changed) we have a world of support from family, friends and the countless professionals who have invested so much time and energy in his care.
It helps to mark February 1st. That day 5 years ago sits heavily in my mind, but I feel better for writing this – thanks for reading.