Warning – this might not be my most upbeat blog post – sorry… I haven’t written anything for a while, but with the arrival of September I have been thinking again about Lennie’s illness (it’s childhood cancer awareness month) and about the impact it has had on him and everyone around him, especially as we prepare for him to start primary school in a week.
The start of school is a big thing. Three years ago we went to a ‘new parents’ evening for Zoe, she visited her new school with nursery, we bought and tried on uniform, we talked positively about school, we did a morning of settling in – and off she went. She was a bit nervous, but mostly it was exciting, fun and new. It has been a bit different this time. We (and many fantastic education and health professionals) have waded through mountains of paperwork and attended several ‘Education Health Care Plan’ meetings, just to get the funding for Lennie to be able to go to mainstream school. We’ve had several transition meetings with the senior team and SENCO, and a whole transition day at school. The school have identified two teaching assistants who will work one-to-one with Lennie every day – they both visited his nursery numerous times during the summer term, to work with him and learn about his needs. The school staff have been on training at the RNIB, and Lennie will be supported by a Qualified Teacher for the Visually Impaired (Sharon, whose virtues we have extolled many times in this blog) in addition to the one-to-one support and class teacher. He will also have OT and speech and language support at school, in addition to all the medical appointments he has under 7 different departments at Great Ormond Street.
He is incredibly lucky to be able to access all this support, to be able to go to mainstream school, to be alive. He is incredibly unlucky to have been diagnosed with one of the rarest forms of bone cancer at the age of 9 months, and to have been left with no sight at all, a brain injury, reduced blood supply to the brain, stunted bone growth, hormone deficiency, digestive problems, ear/nose/throat problems, rickets, behaviour problems (ok, that may just be because he’s 4) and an increased risk of secondary cancer later in life. Some of this – in particular the destruction of his optic nerve – was caused by the cancer itself, but a great deal of it was caused by the treatment. We are enormously grateful for the treatment and care Lennie has received, without which he would not be alive. But there are some hard truths about children’s cancer too – research into the causes and cures is sadly under-funded, and whilst survival rates are (wonderfully) improving for many of the more common cancers in both adults and children, survival rates for children with most types of brain tumour and sarcoma (Lennie has Ewing’s sarcoma) have remained the same. For some children and families, the outlook can be very bleak.
Most of the time I am able to see the positive side. Lennie is very lucky to be with us, and is a happy, growing boy (well, he is now that he has daily growth hormone injections). He was funded by the NHS to have proton beam therapy in Florida – a ground-breaking treatment which has been approved for paediatric use. He has two years of stable scans under his belt, which means the risk of his cancer returning has reduced (although it could still come back). He is looking forward to going to school, and I’m sure he will manage really well, especially with the huge amount of work the staff have put in to help with his transition. But sometimes it’s hard not to imagine what might have been. Zoe sometimes says to us – “I wish Lennie could see”. I’ve learned to respond honestly when she says that – “So do I”. And I wish he hadn’t had to go through a year of intensive chemotherapy and proton beam therapy, and I wish he wasn’t struggling with numerous health problems as a result, and I wish I could be feeling as happy about him going to school as I was three years ago when Zoe bounced in through the classroom door. This time next week I’m sure I will – some days it’s just harder to be cheerful.
And now to redress the balance with some smiley photos of our happy family summer (and I’ve just been handed a glass of wine and told dinner is ready – it’s not all bad)…